! WILL MY INSURANCE COVER IT ? AN ETHNOGRAPHY OF INCLUSION : INITIATIVES TO INCREASE ACCESS TO BRCA 1/2 GENETIC TESTING by EMILY ALLIA HAMMAD B.A., Scripps College, 2004 A thesis submitted to the Faculty of the Graduate School of the University of Co lorado in partial fulfillment of the requirements for the degree of Master of Arts Anthropology 2013
! 2013 EMILY ALLIA HAMMAD ALL RIGHTS RESERVED
! ! "" This thesis for the Master of Arts degree by Emily Allia Hammad has been approved for the Department of Anthropology B y Marty OtaÂ–ez, Chair Sarah Horton Steve Koester July 12, 2013
! ! """ Hammad, Emily Allia ( M.A., Anthropology) Will My Insurance Cover It? An Ethnography of Inclusion: Initiatives to Increase Access t o BRCA 1/ 2 Genetic Testing Thesis directed by Assistant Professor Marty OtaÂ–ez ABSTRACT Women diagnosed with breast cancer may find BRCA 1/ 2 genetic testing useful in order to make decisions about breast cancer treatment options or in determining risk of future cancers. Through an ethnography of eight breast cancer sur vivors in the Denve r Metro Area this study reveals how access to BRCA 1/ 2 genetic testing differ s depending on the ty pe of private insurance coverage patients have The political ecology of health (PEH) theoretical fra mework is used to analyze how the private insurance policies governing breast cancer patients' access to BRCA 1/ 2 genetic testing are tied to the political economy, culture, and environment of the U nited States. Health Mainten ance Organizations (HMOs) and Preferred Provider Organizations (PPOs) are the two primary forms of private insurance companies in the United States and their different policy structures have significant consequences for the health outcomes of the patients covered by these insurance organizations. Women battling breast cancer may or may not be able to obtain a BRCA 1/ 2 genetic test depending on their ability to negotiate for insurance coverage for the testing or how their insurance incentivizes physicians to advocate on their patient's behalf. The results of this study are used to develop a digital story and policy suggestions that are useful in educating breast cancer patients, scholars, health care advocates and he alth insurance policy makers on how priva te insurance policies could be
! ! "# changed to make BRCA 1/ 2 genetic testing more available to the breast cancer patients who want them. This study is especially relevant in light of the June 2013 Supreme Court decision making BRCA 1/ 2 genetic patents illegal and will be valuable as novel genetic testing technology becomes integrated into the United States health care system. The form and content of this abstract are approved. I recommend its publication. Approved: Marty OtaÂ–ez
! ! # ACKNOWLEDGMENTS I would lik e to extend my gratitude and appreciation to my advisor, Marty OtaÂ–ez, for his continued patience, guidance and support. I would also like to thank my thesis committee, Sarah Horton and Steve Koester, who have also offered me a tremendous amount of encoura gement and advice. A special thanks to the women who shared their stories with me, this project would not have been possible without you all. I am unbelievably blessed to have the love and supp ort of many family and friends, thank you all f or your love an d encouragement. Finally, to Amit, my husband and best friend: your unconditional support and love is what keeps me going every day. Thank You.
! ! ! vi TABLE OF CONTENTS CHAPTER I: INTRODUCTION ................................ ................................ ................................ .......... 1 Lorena's Story ................................ ................................ ................................ ........... 1 Introduction to the Research Study ................................ ................................ ........... 3 II : BACKGOUND ................................ ................................ ................................ .............. 8 BRCA 1/2 Genes and Genetic Tests ................................ ................................ ......... 8 Genetic Patents, Testing Costs and Private Insura nce ................................ ............ 10 Private Insurance: PPO versus HMO ................................ ................................ ...... 17 Janelle's Story ................................ ................................ ................................ ...... 17 A Brief History of Private Health Insurance in the U.S. ................................ ..... 20 III : THEORETIC AL FRAMEWORK ................................ ................................ .............. 24 Political Ecology of Health ................................ ................................ ..................... 24 Structural Vulnerability ................................ ................................ ........................... 31 Digital Storytelling ................................ ................................ ................................ .. 35 Bargaining Theory ................................ ................................ ................................ ... 38 Chapter Summary ................................ ................................ ................................ .... 42 IV : RESEARCH METHODS & ANALYSIS ................................ ................................ ... 43 Preliminary Research ................................ ................................ .............................. 43 Recruitment and Interviewing Methodology ................................ .......................... 46
! ! ! vii Design and Development of the Interview Guide ................................ ............... 46 Design and Development of Recruiting Materials ................................ .............. 50 IRB Approval Process ................................ ................................ ............................. 52 Data Collection ................................ ................................ ................................ ........ 53 Data Analysis ................................ ................................ ................................ .......... 57 Digital Storytelling Methodology ................................ ................................ ........... 59 Chapter Summary ................................ ................................ ................................ .... 63 V : RESULTS: BREAST CANCER PATIENTS' OBTAINING BRCA 1/2 GENETIC TESTING ................................ ................................ ................................ ........ 64 Demographic Characteristics of Participants ................................ .......................... 64 Associated Risk of Future Cancer Diagnoses and BRCA 1/ 2 Genetic Testing ..... 66 Cancer Treatment Decisions ................................ ................................ ................... 69 Understanding "The Reason" for Cancer ................................ ................................ 73 Chapter Summary ................................ ................................ ................................ .... 78 VI : DISCUSSION ................................ ................................ ................................ ............. 80 Hidden Inequities: PPO and HMO Insurance Differences in Coverage ................. 80 Physician Intervention: Bargaining With Insurance Companies ............................ 86 Insurance Policies: The Role of Physician Financial Incentives ............................. 93 VII : CONCLUSIONS ................................ ................................ ................................ ....... 99 Lore na's Story: Revised ................................ ................................ .......................... 99 Policy Implications: Beyond Federal Laws on Genetic Patents ........................... 100
! ! ! viii Study Limitations ................................ ................................ ................................ .. 102 Significance of Research ................................ ................................ ....................... 104 Future Directions ................................ ................................ ................................ ... 107 APPENDIX A: DIGITAL STORY SCR IPT AND COMPANION VIEWING GUIDE. 110 APPENDIX B: INTERVIEW QUESTION GUI ................................ ............................ 114 APPENDIX C: PRE SCREENING SCRIPT ................................ ................................ .. 116 APPRENDIX D: SAMPLE STUDY RECRUITMENT ADVERTISMENT ................. 117 BIBLIOGRAPHY ................................ ................................ ................................ ........... 118
! ! ! ix LIST OF TABLES Table 2.1 Basic Differences PPO versus HMO . 20 4.1 Final Code Names .. 59 5.1. Summary of Research Participants .... 65 6.1 Likelihood of Provider Referred Services in HMO and PPO Insurance C ompanies . 95
! ! ! x ! LIST OF FIGURES Figur e 2.1 BRCA 1 and BRCA 2 Genes on Chromosome 13 and Chromosome 17 9 2.2 How the cDNA Probe Works . ... 13
! ! ! xi LIST OF ABBREVIATIONS ACA Affordable Care Act BCS Breast Conser ving Surgery BPA Bisphenol A Plastic BRCA Breast Cancer Gene cDNA Complementary DNA EPA Environmental Protection Agency HMO Health Maintenance Organization PEH Political Ecology of Health Theoretical Framework PPO Preferred Provider Organization U SPTF United States Preventive Services Task Force
! ! ! 1 CHAPTER I INTRODUCTION Lorena's Story If you're rich, if you're rich you probably have a good insuranceso the people that are in better shape financially, even if their insurance doesn't cover the genetic test, they could cover it out of their own pocket. So it's about discrimination. It's about class. I couldn't afford a $3000 or more test. In the passage above, Lorena, a 60 year old breast cancer survivor who participated in my study, reveals int ersections among class, health access and genetic testing. In January 2013, Lorena contacted me after seeing my recruitment flyer for the research posted on the Stapleton Mom's online bulletin board. Lorena and I met at my home office and we discussed her experience with breast cancer for three hours. She never received a BRCA 1/2 genetic test, but believed the test could be valuable to her Lorena, an accountant for the past thirty years, explained that "I've been in remission from cancer for ten years, b ut I worry about it it's in the back of my head all of the time ." The possibility that cancer could return to her life without notice is always in the back of her mind : "I don't think people reali ze that [breast cancer] is some thing you live with every day ." Lorena asked her oncologist in Denver if she can get the BRCA 1/2 genetic test about a half dozen times. Her physician discouraged Lore na from seeking out the testing because she told her she "didn't need to worry about it".
! ! ! 2 Lorena said "I'm going to be 61 at my next birthday and I'm just happy to be living this long. But if they told me right now that I could have the [ BRCA 1/2 ] genetic test, I would have it. I don't know if it would lengthen my lifebut I have daughters and a granddaughterSo I want to know if I have the gene." When Lorena first went to her oncologist and asked about the BRCA 1/2 genetic test, her oncologist explained that the test at $3500 is very expensive and that her Kaiser Permanente insurance company was not likely to cover the test unless she had a mother or several other close relatives who had died of breast or ovarian cancer. When I asked Lorena how this response made her feel she said, "Maybe I should have lied on my [medical family history]? Maybe I should have put on the form that my mom died of breast cancer instead of another diseasehad I known then what I know nowI guess hindsight is twenty twenty. I think that's kind of crappy. That's how I feel ." After the initial conve rsations with her oncologist in 2002, Lorena co ntinued to believe that the genetic test could provid e her with valuable information because she was worried that her breast cancer return and she wanted to make sure she lived long enough to see meet her grandchildren. Originally from a rural town in New Mexico, Lorena explained that most of her family members have never had access to modern health care. She had heard stories as a child about aunts and cousins in her family who had hard spots on their breasts and who died of mysterious causes. During h er three year battle with breast cancer, Lorena returned to New Mexico to visit her family and shared with them the news of her diagnosis. Many of her family members were confused about exactly what breast cancer
! ! ! 3 is: My aunts knew about breast lumps, one of them had a lump cut out of her breast and that was it and another one of my aunts had a lump and never did anything about it Lorena was amazed that others in her family had suffered from breast cancer and never even knew about it. Lorena returned to h er oncologist with this new information about her family's medical history. She was disappointed again by her physician's response. Lorena's oncologist informed her that without proper documentation regarding her family's health history, Kaiser would refu se to pay for the BRCA 1/2 genetic test. According to Lorena, I think that Kaiser is not as good a health plan that they boast to be. I think that they've dropped the ball. I really do think they've dropped the ball. I loved [my oncologist]I don't know i f she down played [the BRCA 1/2 test] because Kaiser wouldn't pay for it or then she talked about the risks being so low that she wanted me to just forget about it.so I did hit some brick walls with the genetic test. Lorena considered changing insurance s, but having been diagnosed with cancer meant that she couldn't afford to pay for a new health insurance plan. She feels discriminated against because her class status makes it impossible for her to afford a more generous insurance plan Introduction to the Research Study Increasingly, women such as Lorena are diagnosed with breast cancer and are interested in genetic testing for the BRCA 1 and BRCA 2 genes associated with hereditary forms of breast and ovarian cancer. The tests provide patients with valu able information that can be beneficial to both the patient and her family. Testing outcomes can provide a
! ! ! 4 women and her family with knowledge about their risk for future breast and/or ovarian cancers and can also be useful in making timely and critical de cisions about how the breast cancer patient chooses to treat her cancer. However, studies have shown that white, Caucasian women, obtain BRCA 1 and 2 tests more often than other groups of women, including Hispanic and African Americans ( Armstrong, et al. 2005 ) ; moreover, the women accessing BRCA 1/2 genetic testing often are covered by private forms of insurance ( Beattie, et al. 2012 ) Previously, unequal access of genetic testing was explained by the higher incidence of BRCA 1/2 genetic mutations amongst white, Caucasian, women; however, more recent studi es have shown that BRCA 1/2 mutations may actually be more prevalent for individuals from all ethnicities and background s, not just Caucasians ( Hall, et al. 2009 ; Kwong, et al. 2012 ) This ne w knowledge suggests that there may be additional barriers impacting access to genetic testing for BRCA 1/2 genes for these groups. My research is an ethnography of inclusion' that studies the space required to ensure that those individuals who wish to obtain genetic testing for the BRCA 1 /2 genes are able to do so. I identify and analyze h ow private insurance companies either promote or limit breast cancer patients' access to these potential ly powerful diagnostic tests. Private insurance policies can pr ovide a woman with in creased bargaining power to negotiate for coverage of BRCA 1/2 genetic testing or can empower physicians to advocate on the behalf of patients seeking testing. In January March 2013, I interviewed eight women in the Denver Metro Area who were diagnosed with breast cancer about
! ! ! 5 their experience with breast cancer and BRCA 1/2 genetic testing. I use the ethnographies of the women I interviewed to develop suggestions for changes to private insurance policies regarding access to BRCA 1/ 2 g enetic testing. Merrill Singer advocates for research that informs the development of public policy through advocacy and empowerment by proposing policies that actually improve the health conditions of individuals and populations ( Singer, et al. 2004 ) Anthropologists have used the framework of medical anthropology as a method to consider the political economy of health, including the way social inequality erodes individual, community and/or sociocultural health outcomes. My research builds on the medical anthropology approach and also takes into account several other perspectives that may impact an individual's health including environmental/ecological factors including where a woman lives and works I am using a political ecology of health (PEH) framework to expose the multiple and overlapping health challenges that may be faced by individuals when seeking insurance coverage for BRCA 1/2 genetic testing The PEH approach to anthropological research draw s upon a political economic analysis of the system and emphasizes the dialectical and feedback processes that occur within the system. This framework is a powerful tool to identify how a woman's health is simultaneously under her, as well as outside, of he r control. For example, a breast cancer patient seeking genetic testing my be beholden to changing federal and private insurance health policies, including those that allow her to access certain types of diagnostic tests, and legal perspectives, including
! ! ! 6 those that support or refute laws that allow BRCA 1 and 2 tests to remain under the control of private companies. In June 2013, the Federal Supreme Court ruled against the legalization of genetic patents and quite possibly eradicated some of the barriers that have previously denied breast cancer patients access to BRCA 1/ 2 genetic tests. Still, before the Supreme Court decision can significantly change access to BRCA 1/ 2 genetic testing, other changes are needed, including change s to private insurance comp anies' policies regarding coverage for genetic tests like the BRCA 1/2 genetic test. Therefore, as genetic testing is more commonly used in treatment of cancers, the demand for genetic testing will continue to grow and this research will be relevant for a ll breast cancer patients, as well as other patients seeking testing for other diseases that have a hereditary link. Additionally I create digital stories as an ethnographic method in order to help shape others' beliefs and understanding of how genetic testing can enhance the wellbeing of breast cancer patients. The digital storytellin g method is a way to take an activist approach to my research and unlike traditional methods of writing research papers, has enabled me to disseminate my research data to a wider audience, including the breast cancer survivors of this study and other breast cancer patients, their families, health care providers including physicians treating hereditary cancers insurance policy makers and other anthropologists and scholars These three minute autobiographical videos incorporate narration, photos, video footage and music to share the voice of people affected by health disparities. I developed a digital story sharing my personal experience
! ! ! 7 interviewing the breast cancer survivo rs who participated in this research project. The objective of my digital story is to share research knowledge with other anthropologists and scholars, and also to influence health care policy makers and other community member's beliefs, attitudes and beha viors about hereditary breast cancer. Therefore, my digital story is an additional vehicle used to address some of the problems I uncovered throughout this research process
! ! ! 8 CHAPTER II BACKGROUND BRCA 1/ 2 Genes and Genetic Tests Every year over 175,0 00 women and 2,200 men are diagnosed with breast cancer ( Ottini, et al. 2012 ; Siegel, et al. 2012 ) In the mid 1990s when researchers first identified the BRCA 1 and BRCA 2 genes as the primary genes associated with hereditary breast and ovarian cancer, researchers, clinicians and patients received this news with genuine hope and excitement (Figure 2.1) The BRCA 1 / 2 genes are f ound in every cell in the body, yet they al most exclusively target breast tissues, and to a lesser extent the ovary and fallopian tubes ( Agnantis, et al. 2004 ) Mutations in either BRCA 1 or 2 genes are associated with about 10% of all breast and ovarian cancers; but if an individual carriers a mutation in either of these genes they wil l have : ( a) 60% lifetime risk of breast cancer compared to about a 12% risk of cancer in non mutation carriers and ( b) 15 40% risk of ovarian cancer compared to only a 1.4% chance in non mutation carriers ( John, et al. 2007 ) Hence, the identification of these genes opened the door to more foc used screening and prevention strategies for breast, ovarian and other cancers, including intensive surveillance and prophylactic treatments. Women and men may be interested in genetic testing for the BRCA 1/ 2 to help direct the management of their health and also as a way
! ! ! 9 to gain information about risk of cancer that may benefit other members of the individual's family. Figure 2.1 BRCA 1 and BRCA 2 Genes on Chromosome 13 and Chromosome 17 ( Bolton, et al. 2012 ) There are many misconceptions about genetic testing and how genetics can impact chronic disease ( Armstrong, et al. 2005 ; Pal, et al. 2008 ) Some studies have found that some people believe that genetic informati on may be used to deny access to employment opportunities or that that genetic information will be used for racial and
! ! ! 10 ethnic discrimination ( Hietala, et al. 1995 ; Reitz, et al. 2004 ; Rose, et al. 2005 ) More often, individuals are worried that the test results may lead to employment or insurance discrimination ( Hietala, et al. 1995 ; Reitz, et al. 2004 ) This is especially true amongst certain ethnic groups, including African American women ( Armstrong, et al. 2005 ; Malone, et al. 2006 ; Pal, et al. 2008 ) Misconceptions about genetic testing likely account for why many ethnic groups may be tested for the BRCA 1/2 genes less frequently than white/Caucasian individuals. Studies attempting to understand disparities in access to genetic tests have found that ethnic minorities, including A frican Americans and Latinos, often have a lack of knowledge and education about genetic testing and are not clear on the benefits of these diagnostic tests ( Armst rong, et al. 2005 ; Pal, et al. 2008 ) For instance, members from the Black/African American community may have misconstrued ideas about how their family history and heredity impacts their health. In one st udy, participants identified smoking, poor diet and physical inactivity as contributing factors to breast cancer, but were less likely to believe that family history played a significant role in the development of chronic disease ( Murthy, et al. 2011 ) Hence, edu cation about genetics and hereditary disease may be limited to certain groups of people and insufficient education is a potential barrier in access to genetic testing. Genetic Patents, Testing Costs and Private Insurance Myriad Genetics, a biotechnology c ompan y based in Salt Lake City, Utah, first identified the BRCA 1 and BRCA 2 genes as the genes primarily associated with hereditary breast cancer. In 1995, Myriad Genetics applied for and received a genetic
! ! ! 11 patent for these genes and subsequently deve lope d the diagnostic genetic test for the BRCA 1/ 2 genes. Myriad's ownership of the gen etic patent has meant that the company maintained complete control over the DNA sequence of the BRCA 1/ 2 genes. Since Myriad Genetics has been the only company able to offer genetic testing for the BRCA 1 and BRCA 2 genes it has been able to set the prices for the genetic tests. In 2012, Myriad Genetics screened over 130,000 individuals for mutations in the BRCA 1 and BRCA 2 genes ( Henderson and Meldrum 2013 ) The approximate cost to test and sequence both of these genes in an i ndividual is approximately $3500 ( Beattie, et al. 2012 ) This price does not include other costs that are associated with genetic testing, such a s the genetic counseling appointment(s) to follow up with individuals about the results of their BRCA 1/2 genetic test s On August 15, 2012, a Federal appeals court reaffirmed the right of Myriad Genetics to maintain the patent on the BRCA 1 and BRCA 2 ge nes. The American Civil Liberties Union (ACLU) originally brought the case against Myriad Genetics to court and claimed that genetic patents were unconstitutional and invalid. ACLU appealed the Federal appeal's court decision and on April 15, 2013, the U.S Supreme Court began hear ing oral arguments in this case. A number of groups have supported the case against Myriad, including the American Medical Association (AMA), the March of Dimes, the American Soci ety for Human Genetics and even Dr. James Watson, w ho is one of the original discoverers of the double helix structure of DNA ( Noonan 2012 ) The primary argument against the patenting of genetic sequences and testing is simple: these patents prevent
! ! ! 12 people from accessing knowledge abo ut their own body and health. A direct result of the legalizati on of patents for genetic tests is the h igh costs associated with genetic t esting that discourage insurance companies from covering genetic tests to the same extent they cover other diagnostic tests On June 13, 2013, the Federal Supreme Court officially ruled that the patenting of genetic material is illegal based on the fact that DNA is a naturally occurring phenomenon and therefore, not eligible for patenting. The Supreme Court ruling means t hat Myriad Genetics will have to relinquish the patent it holds for the BRCA 1 and BRCA 2 genetic sequences allowing other biotechnology companies and research labs to develop their own research on these two genes. Undoubtedly, the Supreme Court decision in June 2013 was a major victory for human rights groups including the ACLU, because it gives individuals irrefutable rights to their own genetic material and information. Nevertheless, the Supreme Court decision did uphold the genetic patenting of compl imentary DNA, or cDNA. Complementary DNA is synthesized from natural messenger RNA in cells and is essentially a mirror image of the actual DNA sequence ( Adams, et al. 1991 ) The cDNA is the actual material used in gene cloning or in gene probes becau se this complementary DNA sequence will bind to the part of the DNA sequence that the scientist working in the lab is attempting to find (Figure 2.2).
! ! ! 13 Figure 2.2 How the Myriad BRCA cDNA Probe Is Created ( Telscher and Keane 2013 ) The Supreme Court ruled in favor of upholding th e patents for cDNA because they are not naturally occ urring genetic sequences, but instead are man made and synthesized in a lab. Myriad Genetics continues to maintain its ownership of the cDNA patents for the BRCA 1/2 genes and it is the cDNA that is actu ally used in the lab for the BRCA 1/2 genetic tests. Essentially, the Supreme Court's decision was a compromise because it
! ! ! 14 opened the door for others to develop genetic tests for the BRCA 1 and BRCA 2 genes, but it also means that Myriad can continue to co ntrol the right to current genetic test for the BRCA 1/2 genes. In the aftermath of the Supreme Court's decision, both sides claimed victory and the stock price for Myriad Genetics increased about 10% ( Pollack 2013 ) Therefore, i t remains unclear how this new federal l aw g overning genetic patenting will affect individual's access to genetic testing. The recent ruling by the Supreme Court on the issue of genetic patents informs this research study. In the Discussion chapter I explain how different private insurance compani es may deny access to the BRCA 1/ 2 genetic testing and way t hese decisions are likely financially driven. Today, Myriad charges $3500 for the BRCA 1/ 2 test ; however, now that the company no longer owns the patents to these genes, it is possible that new te sting technol ogies will become available. This competition may force Myriad to lower their price and provoke doctors and pati ents to look elsewhere for genetic testing for hereditary breast cancer In the past, t he high price tag associated with the BRCA 1/ 2 test has meant that many insurance companies haven't covered the test unless a woman has a significant incidence of breast cancer in her family medical history. For example, many insurance companies require that at least 5 10% of the women in the test ing candidate's family to have been diagnosed with breast cancer ( Beattie, et al. 2012 ) Other insurance companies may require higher thresholds of family members affected by the disease; for example, Kaiser Permanente insurance demands that the woman have at least 10% of her female family
! ! ! 15 members to have a documented diagnosis of breast cancer before they will choose to cover the BRCA 1/2 genetic test ( Beattie, et al. 2012 ; Mouchawar, et al. 2003 ) If an individual does not meet the criteria set by her insurance company, a woman may be denied insurance coverage for the test. If the person still feels that the genetic test could be valuable to her, the only option is to pay for the test is out of pocket and many people find the $3500 price tag for the test too expensive to pay for on their own The fundamental problem of using only a person's family medical history to d etermine eligibility for coverage for the BRCA 1/ 2 genetic test, is the assumption that the family medical history is complete and documented within her health records. However, recent studies indicate that patients' medical family histories are often incomplete ( Beattie, et al. 2012 ; Burke, et al. 2009 ; Guttmacher, et al. 2004 ; Happe 2013 ) In the past, family medical history was widely regarded as an important factor in assessing an individual's risk for disease, but it is increasingly becoming regar ded as inaccurate. Certain groups of people a re more likely to have incomplete family medical histories than others, such as African Americans and Latinos ( Beattie, et al. 2012 ; Burke, et al. 2009 ; Pal, et al. 2008 ) It is still unclear why individuals in these particular groups may not have complete medical histories, but part of the problem may be linked to th e type of health insurance coverage, which possibly affects the quality of medical attention the patient receives. Take the example of Lorena, her incomplete medical history prevented her from accessing insurance coverage for the BRCA 1/ 2 genetic testing. Other reasons
! ! ! 16 for unreliable family histories may include a lack of communication with family members geographic dispersion and differing cultural understandings of cancer ( Beattie, et al. 2012 ) Genetic counseling services are meant to help an individual better understand these issues, as well as the relationship between heredity and disease, but once again, many insurance plans do not currently cover genetic counseling costs. The U.S. Preventive Services Task Force (USPSTF) formed in 1984 as an independent group of national experts in prevention and evidence based medicine whose mission is to make recommendations about clinical preventive servi ces including screenings, counseling services or preventive medications ( Clancy 2011 ) The organization is made up of 16 volunteer members from a var iety of fields of preventive medicine and primary care. The USPTF forms recommendations independently of other Federal organizations, including the Department of Health and Human Services, but these recommendations are used to guide Congressional and Feder al decisions about health care policies and laws ( Clancy 2011 ) With the passage of the Afford able Care Act was passed in 2010 all health insurance plans are required to cover preventive services. In 2005, members of the USPSTF suggested that individuals with a personal or significant family history of breast or ovarian cancer automatically qualify for the BRCA 1/ 2 genetic testing. Unfortu nately, thi s suggestion was not included in the final Preventive Services Task Force Policy ( Mah on and Crecelius 2013 ) ; however, the USPSTF did decide to include coverage for genetic counseling services. Ironically, if an individual is identified by her clinical provider as having significant family history of breast cancer and is
! ! ! 17 referred to genet ic counseling for the BRCA 1/2 genes, she may not actually be able to receive the genetic testing due to the previously discussed coverage restrictions by insurance companies Moreover while genetic counseling services can be valuable for an individual's assessment of their risk for breast cancer, referrals to genetic counseling programs are based solely on a person's documented family medical history. Private Insurance: PPO versus HMO Janelle's Story Janelle is a 43 year old breast cancer survivor with a Caucasian and Latina mixed ethnic background. She has Blue Cross/Blue Shield PPO insurance and was diagnosed with breast cancer in April 2011. Janelle's sister suffered from breast cancer. Her father died of cancer. When Janelle was diagnosed she was sti ll surprised by the news: "I was at work when my doctor called me to tell me the results of my bi opsy. When I hung up, I could barely speak, I don't even remember how I drove home that day ." Janelle is a human resources consultant and has three sons ages 5 7 and 16. After receiving the initial breast cancer diagnosis, she wanted to move quickly to treat her cancer in order to continue on with her life. Janelle consulted with her oncologist and oncological surgeon in order to develop a treatment plan. She r elied on her sister and others she knew who had suffered from breast cancer to guide her through this new overwhelming journey. These survivors taught Janelle to learn as much as she could about her cancer and her treatment options, but also to make treatm ent decisions as quickly as possible.
! ! ! 18 Janelle met with her oncological surgeon at a breast cancer clinic in Denver. Based on Janelle's family medical history, having both a father succumb to cancer and a sister who had survived breast cancer, the surgeon suggested that she get the BRCA 1/ 2 genetic test in order to make a decision regardi ng a more invasive surgical plan. The surgeon explained to Janelle that she "should do the BRCA test; if you do the test and you get a positive result, then you should defi nitely do the bilateral mastectomy (as opposed t o the less invasive lumpectomy) Janelle aske d her doctor to order the test. Unfortunately, Janell e received a phone call from a Blue Cross/Blue Shield insurance representative explaining that the insurance company would not be able to cover the BRCA 1/ 2 genetic test. The insurance representative explained to her that the insurance's policy never covers BRCA 1/ 2 genetic testing, but the representative didn't explain to Janelle exactly why the company chose no t to cover the test. Janelle wasn't sure what to do, but she was adamant that she wanted to have the test: "I knew that if I was [ BRCA ] positive, that would seal the deal. I would get a bilateral mastectomy. I felt that I needed to have the test informati on to make this kind of huge decision about my cancer treatment ." During the first two weeks of her diagnosis with cancer in 2011, Janelle spent several hours on the phone trying to persuade with her insurance to persuade the company to cover th e cost of t he test. In the mean time, she knew that she needed to get the test done quickly because she wanted to schedule her first surgery. "I had to hound [the insurance company], I really did have to hound them because e verything was happening so fast
! ! ! 19 Eventually Janelle asked her oncologist if there was anything that she could do to get the insurance company to change their decision to deny coverage for the BRCA test. Janelle's oncologist wrote the insurance a letter explaining the importance of the genetic test in Janelle's cancer treatment. Within one week, Blue Cross/Blue Shield reversed its initial decision and chose to cover the cost of Janelle's BRCA 1/ 2 genetic test. Janelle acknowledged that she was lucky that her doctor acted as her advocate and eventu ally was able to convince her insurance the BRCA 1/ 2 genetic test was necessary and that they should cover the testing cost. After my interview with Janelle, I considered her experience with BRCA 1/ 2 genetic testing and compared it to the story Lorena had told me about her experience with BRCA 1/ 2 testing. Similar to Janelle, Lorena's Kaiser insurance had refused coverage for the BRCA 1/ 2 genetic test, but the difference lay in Janelle's physician intervened in order to help make sure she was able to get th e genetic test. One of the key differences in Lorena and Janelle's story was the type of insurance the women had: they both had private insurance, but Lorena had a Health Maintenance Organization (HMO) insurance plan and Janelle was covered by a Preferred Provider Organ ization (PPO) insurance plan. As I spoke with more breast cancer survivors, I became more aware of the women in the study who wanted BRCA 1/ 2 genetic testing; the women with PPO insurance w ere more likely to receive insurance coverage for th e testing. This difference in coverage for genetic testing provoked me to explore the variances between HMO and PPO private insurance companies and their policies.
! ! ! 20 A Brief History of Private Health Insurance in the U.S. An unforeseeable outcome of the gro up of participants in this study was that all of the women interviewed happened to have private insurance while being treated for breast cancer. This coincidence offered some of the most provocative insights into my analysis of barriers to BRCA 1/ 2 geneti c testing and therefore, it is critical that I provide the reader with some basics about health insurance in the United States. As a result of the 2010 Affordable Care Act (ACA), health insurance has been at the forefront of American conversation today. Di scussion s of health care and health insurance primarily are focused on three major categories: private insurance, public insurance and the uninsured. Within these three categories, there are a plethora of different types of insurance companies, policies an d plans making it challenging for even for the best informed to follow all of the nuances of the different ins urance options available today (Table 2.1). Table 2.1 Basic Differences PPO versus HMO Preferred Provider Organization (PPO) Health Maintenanc e Organization (HMO) Number of "In Network" Providers Usually Large Number Limited Number Annual Deductible $250 $1000/year $100 $500/year Primary Provider Co Pay $15 $30/visit $10 $20/ visit Specialists No Referral (In and Out of Network) Need Refer ral Prescriptions Generic or Name Brand Usually Generic Only According to a Robert Wood Johnson Foundation study in 2011, the number of Americans with private insurances has fallen from 68% to 61% in 2009 while the
! ! ! 21 percentage of Americans with public i nsurance (Medicare/Medicaid) has steadily risen to 15.9% The two primary forms of private health insurance on the market are called Health Maintenance Organizations (HMOs) and Preferred Provider Organizations (PPOs) ( RWJFoundation 2011 ) Private insurance may be purchased by groups (employers) or by individual consumers; however, most American s with private insurance receive coverage through an employer sponsored insurance program. The U.S. insurance market is highly concentrated with only a few providers insuring the majority of privately insured individuals. In a surprising study by the American Medical As sociation, in 90% of health insurance markets, the leading private health insurance company controls at least 30% of the market; in 54% of insurance markets, the leading insurer controls more than 50% of the market ( Deem, et al. 2007 ) Researcher s have argued that the near monopoly of insurance providers over the market continues to drive increases in health care costs and health insurance premiums ( Bardey and Rochet 2010 ) Health insurance in the United States began as a quasi indemnity policy as most people paid a fixed amount per day in the hospital. Blue Cross was one of the first companies to offer Americans private health insurance beginni ng just before the Great Depression ( Cutler and Zeckhauser 2000 ) Early health insurance policies were run by hospitals, but after World War II, when life insurance companies entered into the health insurance market (partially driven by the favorable treatment by the f ederal tax policies) the popularity of private health insurance began to grow ( Cutler and Zeckhauser 2000 ) Traditionally, p rivat e health insurance has been a fee for service system, where people
! ! ! 22 have free choice of provider. Today, Preferred Provider Organization (PPO) health insurance continues to operate primarily under this same fee for service system The result of this free ch oice, PPO, system is: (1) Individuals are free to choose their provider, meaning that the insurance company has limited bargaining power with the provider; (2) direct negotiation between the medical care provider and the patient regarding fee for payment; (3) providers can choose which prescriptions and medical services are best for the patient; (4) a fee for service payment plan allows the provider to have maximum control over their income and grants the provider discretion over the amount and type of serv ices provided. The traditional fee for service/PPO insurance plan continued well into the 1970s, until t he HMO Act of 1973 was passed by Congress in response to the rising c osts of health care in the U.S. Health Maintenance Organizations (HMOs) includin g Kaiser Permanente, trace their origins to prepaid group health care practices that began in California during the Great Depression ( Cutler and Zeckhauser 2000 ) HMOs are designed to implement tight restrictions on provider authorizations for treatments and patient choice of providers as a way to manage treatment utilization and quality ( Shin and Moon 2007 ) In recent years, the U.S. has witnessed dramatic g rowth in the number of HMO companies and plans as the private insurance market has struggled with cost containment performance. In Colorado there are 46 different HMO insurance plans and of these insurance plans, Kaiser Permanente is responsible for the co verage of 63% of all individuals covered by HMO insurance policies ( Kaiser Family Foundation 2011 )
! ! ! 23 As expected, previous studies found that HMO insurance pl ans did experience lower total expenditures than PPO insurance plans ( Parente, et al. 2004 ) Interestingl y, more recent research models that have examined differences in total spending in HMO plans versus PPO insurance plans have found that total spending in HMO plans has grown and is now on par with the total spending of PPO plans ( Shin and Moon 2007 ) A possible explanation for recent increases in HMO total spending is greater use of in office health services and out patient hospital services ( Buchmueller 2009 ; Shin and Moon 2007 ) The authors of these studies reason that most of the success of HMO insurance companies has been based on data collected during the 1990s when HMO insurance models were on the rise; however, patients and pro viders today have become "disenchanted" with the supply side strategies used by HMOs to control utilization and therefore have begun to return to the consumer directed PPO health plans ( Buchmueller 2009 ) This research alludes to the findings presented within this study; all of the participants in this study with HMO insurance conveyed dissatisfaction with their insurance and believed that their insuran ce was the primary barrier to accessing the BRCA 1/2 they desired: I asked about getting [ BRCA 1/2 ] testing, but my doctor just shut me down right away and told me that Kaiser doesn't do that sort of thing. I thought it was kind of weird, but that was wh at she was like with a lot of stuff that I would read about and th en ask if it would work on my cancer. I thought about changing doctors, but every doctor at Kaiser seemed to say the same thing, so I just gave up. Dora, Age 62
! ! ! 24 CHAPTER III THEORETICAL F RAMEWORK Political Ecology of Health The primary aim of this work is to identify and analyze barriers that exist in access to genetic tests that contribute to the availability of novel genetic testing technologies. Previous clinical research examining th e frequency of BRCA 1 and BRCA 2 mutations in different ethnic groups concluded that BRCA 1 and 2 deleterious mutations are less common amongst families with African American and Hispanic backgrounds as compared to families with European ancestry ( Armstrong, et al. 2005 ; Nanda, et al. 2005 ) Yet the BRCA PRO models that have been used to determine a n individual, fa mily and populations' likelihood of carrying either a BRCA 1 and/or 2 mutation were developed using frequencies from white and Ashkenazi Jewish populations and are not a pplicable to other ethnic/racial populations ( Vogel, et al. 2007 ) These studies were based on limited knowledge about hereditary links to breast cancer. Previous researchers assumed that because Ashkenazi Jewish and Caucasian populations had higher incidence of breast cancer that they were more likely to have the BRCA 1/ 2 genetic mutation and therefore, developed the models based on these assumptions ( Vogel, et al. 2007 ) Therefore, for most ethnic and racial groups, these early models underestimated an individual's possibility of carrying a deleterious mutation in either BRCA 1 or BRCA 2.
! ! ! 25 Medical anthropologists ( Hall, et al. 2009 ; Kwong, et al. 2012 ) are beginning to develop a clearer perspective on how BRCA 1 and 2 mutations may impact an individual's risk for breast and/or ovarian cancer in populations other than European whites and Ashken azi Jews The repercussions from these inaccurate studies involving frequency of BRCA mutations amongst different ethnic groups continue to have wide reaching impacts as seen in significant differences in the numbers of white individuals obtaining BRCA 1 a nd 2 genetic tests versus the low number of individuals from other ethnic groups, including African American and Hispanic ( Armstrong, et al. 2005 ) Misconceptio ns regarding ethnic and racial differences in BRCA 1/2 frequencies amongst different populations remain prevalent in current literature and discussion s on hereditary breast cancer This perpetuates barriers that ethnic and racial minorities may encounter i n access to genetic testing. Preliminary research for this study raised some provocative questions regarding how different marginalized groups are unable to access BRCA 1/ 2 genetic testing. Previous research on barriers to genetic testing in ethnic minori ties appeared to focus on two issues: ( 1) non white ethnic populations did not access genetic testing because they were less likely to be carriers of these genetic mutations ( Hunt, et al. 2005 ; Nanda, et al. 2005 ) and ( 2) some disenfranchised groups including African Americans and Hispanics do not obtain genetic testing because they lack education and knowledge about testing ( Armstrong, et al. 2005 ) Obviously, the first point is no longer valid with more recent research that has found BRCA mutations are equally distributed amongst all ethnic
! ! ! 26 groups, with the exception of Ashkenazi Jews ( Hall, et al. 2009 ) While the second argument is partially true I found that it insufficiently explains why genetic testing prevalence would be so much lower than testing for whites/Caucasians. Why aren't e thnic minorities in the US receiving genetic testing for th e BRCA 1/2 mutations? Are certain ethnic groups more familiar with BRCA 1/2 testing or were able to access genetic testing more than Caucasians? The initial objective of this study was to compare the experiences of breast cancer survivors from a many diffe rent ethnic and cultural backgrounds I did not feel the research participants that were recruited in this study provided enough data to answer these questions, so I refocused my attention on ethnicity as an explanatory factor in my work and looked for ot her barriers in access to BRCA 1/ 2 genetic testing. The purpose of this study is to uncover authentic reasons for why genetic testing is unequally accessed by all individuals and groups in the U.S The results of this research are used to develop digita l stories and proposed changes to the private insurance policies that perpetuate obstacles to BRCA 1/ 2 genetic testing. Critical medical anthropologists, such as Merrill Singer, have advocated for research that informs the development of public policy thr ough advocacy and empowerment by proposing policies that actually affect the health conditions of individuals and populations ( Singer, et al. 2004 ) Critical medical anthropology incites scholarly considera tion of the political economy of health including social inequality that result in individual, community and/or
! ! ! 27 sociocultural health outcomes. I extend critical anthropology by adding a perspective on environment/place and social factors in the study of a ccess to BRCA 1/ 2 genetic testing. Critiques of the critical medical anthropology approach to research are that it is strictly a socio political approach that fails to address the importance of ecological processes ( Crews and King 2012 ) The Environmental Protection Agency (EPA) defines the e nvironmental justice concept as the fair treatment and meaningful involvem ent of all people regardless of race, color, national origin, or income with respect to the development, implementation and enforcement of environmental laws, regulations and policies ( Weinberg 1998 ) The environmental justice concept has broadened our understanding of disparate access to social and environmental activities and proponents of the concept reason that environmental issues b ecome a form of environmental racism and discrimination that can be used to deny access to human rights including good health and positive health outcomes A theme amongst environmental justice studies is how human health can be understood as shaped by s ocial and biological systems that intersect across multiple spatial and temporal scales ( Crews and King 2012 ) In t he case of genetic testing, ecological perspectives help to tie the human health condition to the set of systems in which it is placed (e.g. urban/rural, individual/community, indoors/outdoors); if we separate individuals from their environment then we ign ore the dialectical relationships that exist between health and ecosystem health. A person's place of employment is part of the environment where an individual lives and works. Consequently, a nthropologists
! ! ! 28 have used the environmental justice concept to a ddress health disparities related to complex domain of work, including occupational exposures, working conditions and access health insurance ( Lipscomb, et al. 2006 ) For instance, of the 61.2% of Americans covered by private insurance in the U.S. today, 74% of these individuals receive health insurance cove rage through a workplace sponsored insurance plan ( Cohen and Martinez 2009 ) The eight women who participated in this study, including the women who were married, accessed their private health insurance through their workplace s These women explained that they were not offered a choice between private insurance options, apart from the decision whether or not to partake in the employer sponsored insurance program. Additionally, they were unable to choose between an HMO or a PPO private insurance plans. The political ecology of health (PEH) framework examines bio cultural, political, economical and ecological factors in order to develop a rich and deep perspective on issues of health ( Baer 1996 ) This approach provides anthropologists with a framework that l inks the health and well being of an individual to the environment and economy where the individual lives and works. The framework becomes a powerful lens through which a person's health and well being is examined by evaluating circumstances in her environ ment that are both inside and outside of the individual's control. I chose to approach my research and analysis from the perspective of the PEH framework because I believe that it offered me a comprehensive picture of the complexities of medicine and healt h outcomes. I view the workplace and health as a dialectical relationship because
! ! ! 29 private insurance is accessed through employment, private insurance impacts health outcomes and health outcomes will eventually impact a person's ability to work. In his wor k investigating how the consequences of vulnerability among rural producers in southern Peru contributed to the spread of the Sendero Luminoso revolutionary movement, Thomas Leatherman (2005) first needed to identify the "space of vulnerability". In order to accomp lish this, Leatherman needed a theoretical framework that could be used to examine the intersection of poverty, hunger, nutrition and health in order to construct this space ( Leatherman 2005 ) Leatherman stated that a frame work used to evaluate the space of vulnerability emphasizes asymmetries of power, unequal distribution of resources and structural inequalities all of which are critical to understand environmental change and its impacts and is paired with a focus on huma n agen t s and their own motives and actions. More simply this framework is a "unity of structure and agency" ( Leatherman 2005 ) Through the application of PEH, Leatherman achieves his goal of illuminating a piece of the broader proce sses that play a role in the reproduction of poverty and poor health in rural Peru. Leatherman's study using PEH demonstrate s what Hans Baer (1996) explains as the emphasis on the dialectical processes that promote disease, rather than the bio cultural a pproach that views nature and political economy as interpenetrating PEH offers a better understanding of the complex processes operating at different levels and across a range of scales in order to comprehend why some women may not have access to gene tic testing technologies ( King 2010 ) The PEH framework demonstrate s how health
! ! ! 30 is embedded within social networks that may increase a person's vulnerability to disease and may shape how an individual makes decisions about her health. The three participants in this study who wanted BRCA 1/2 genetic testing but were unable to receive insurance coverage were limited by the policies of their health insurance These private insurance policies direct how patients and care providers assert agency within this health care system. As seen in Lorena's experience with her Kaiser insurance refusing to cover the BRCA 1/ 2 genetic test, t he type of insurance or medical coverage a person has can impact the availability and type of medical tr eatments that a person can access In the Results and Discussion chapters, I highlight how breast cancer patients inability to undergo BRCA 1/2 genetic testing due to insurance policy restrictions, can place them at higher risk of developing future cancers or negatively impact their cancer outcomes Oncologists now encourage women diagnosed with breast cancer to undergo genetic testing in order to make cancer treatment decision s. Genetic testing may encourage a breast cancer patient or her family members to take aggressive preventive action against future cancers including preventive surgeries to completely remove breasts and/or ovaries. Risk striates the social body into degrees of action and operability and hence refracts social inequalities at the level of access to preventive treatments and surgical interventions ( Nguyen, et al. 2003 ) Differences in access to medical inter ventions can represent variances in distress for individuals and groups at different positions on the socio cultural ladder ( Ng uyen, et al. 2003 ) This begs the questions: for in dividuals unaware of their
! ! ! 31 risk, including women denied access to genetic testing diagnostics for risk, do they fall completely off the socio cultural ladder? Wakefield and Ba xter (2010) argue that for researchers to work towards improved justice and sustainability in the environmental health arena, a framework is needed to consider environmental justice and health inequality in terms complex structures that place individuals at a disadvantage on the com munity level. The authors rationalize that the political ecology of health framework assists in exposing the multiple and overlapping health challenges that may be faced by marginalized in dividuals and groups of people ( Wakefield and Baxter 2010 ) This study focuses on the role of private insurance in access to BRCA 1/2 genetic testing and demonstrates how access to thi s technology is dependent on issues of society, culture, economy, politics and environment. Structural Vulnerability "Struct ural Vulnerability ," a concept developed by Quesada, Hart and Bourgois (2011) is a central element of the PEH approach that I use in my study. It refers to the positionality that imposes physical and emotional suffering on specific population, groups, and individuals in patterned ways. Structural vulnerability is a produ ct of class based economic exploitation and cultural, gender/sex ual and racialized discrimination as well as complementary process of depreciated subjectivity formation ( Quesada, et al. 2011 ) The authors developed the concept to reveal patterns of ill health in the undocumented Latino immigrant population in the U.S. Structural vulnerability is a useful tool to uncover how s tructural forces may result in poor health outcomes for
! ! ! 32 vulnerable groups. I argue that in the case of genetic testing the neoliberal policies of private insurance companies place most breast cancer patients a t risk for poor health outcomes such as inappro priate surgical interventions or inadequate access to preventive treatments for future cancers. This is accomplished by either 1) denying them access to knowledge that can enable them to make more informed decisions about how they should treat their cancer or 2) preventing both the patient and her family members, from obtaining knowledge about their risk for future breast and/or ovarian cancers. The Affordable Care Act (ACA) of the United States was passed in 2010 with the explicit aim of providing "healt h care for all ." While parts of the ACA are already in place, including, mandatory increased preventive care coverage by all insurance providers (public and private) most of the key components of the law will not be implemented until 2015 or later Current f ederal timelines have stated that health insurance marketplaces in all states, tax credits for families and increased access to Medicaid will be rolled out by the end of 2015 ( Strokoff, et al. 2010 ) By 2019, the ACA is expected to extend health insurance to an additional 32 million U.S. residents who are not currently covered by any form of insu rance ( Day 2010 ) ; however the ACA does not specifically address issues of "under" insurance. Quesada et al. (2011) comment that this act expressly barred undocumented immigrants from accessing coverage and reaffirming their exclusion from public services and basic legal rights. W hile this is true, there may be other groups of legal U.S. residents that may also be left out of accessing these basic "health rights" that the ACA claims to provide to all Americans. Although the ACA does
! ! ! 33 require private insurance companies to cover prev entive servi ces for all insured patients. It does not require the insurance company to cover testing that may be a part of the preventive medical strategy for a patient. For example, by 2014 patients who are considered "at risk" for hereditary forms of bre ast cancer will have genetic counseling servi ces covered by their insurance, but they will not be guaranteed insurance coverage for a BRCA 1/2 genetic test. This preventive genetic counseling for breast cancer may be useful for the children and grandchildr en of some of my research participants, such as Lorena's daughter and granddaughter; however it will not guarantee them testing nor will the ACA ensure testing for breast cancer survivors, including the participants of this study. Recent studies ( Hall, et al. 2009 ; Kwong, et al. 2012 ; Nanda, et al. 2005 ) indicate t hat BRCA 1 and 2 mutation s occur at higher frequencies than previously believed in all ethnic populations. This suggests that there are probably a nu mber of men and women who are "at risk" for BRCA 1/2 mutations, but are unaware due to incomplete medical f amily histories. Consider Lorena's story about her aunts in New Mexico who likely had breast cancer, but their cancer was never formally diagnosed. Because Lorena's aunts were never medically diagnosed with breast cancer, she did not have documented proof of a family history that could have provided her insurance coverage for the BRCA 1/2 genetic testing. Family medical histories are questionnaires used by health care providers to gather previous health information about and individual and her immediate f amily
! ! ! 34 members, including parents, grandparents and children. These questionnaires are not standardized; however, the American Medical Association (AMA) has created a variety of family medical history questionnaires that are available to U.S. health care pr oviders. There are a number of reasons why a medical family history may be incomplete, including differing views by individuals and/or cultural groups about how health may be linked to heredity. "Cultural competence" rubrics have been utilized since the m id 1970s when medical anthropologists contributed to clinicians' recognition of cultural barriers to effective health care. There remain a number of problems with this cultural competence practices including the possibility that practical application can devolve into a repackaging of stereotypes ( Quesada, et al. 20 11 ) In fact, anthropologists have criticized that medical schools utilizing "cultural competency tools, stating that these tools are worse than the actual disease ( Good, et al. 2002 ) and that medical providers and anthr opologists should develop new and innovative understandings of culture, ethnicity and racism if we hope to capture multidimensional understandings of patients. Uncovering barriers in access to genetic testing is challenging because this technology is embe dded within a complex structure of bio cultural, political, economic and ecological factors. The PEH perspective enables me to examine and analyze how these factors work together to create difficulties in access to testing and identify potenti ally negative health outcomes. As I began this research project I had limited appreciation for the significant role that private insurance actually plays in the access to BRCA 1/2 testing; yet as I interviewed women who were covered by different private
! ! ! 35 insurance com panies and plans, I appreciated how these women had notably different outcomes in their ability to access these tests and likewise, in their overall breast cancer experience. The PEH/structural vulnerability framework enabled me to further examine how know ledge and education available to a woman during her cancer battle impacts the agency she had to negotiate with her provider and/or insurance to receive the treatments she needed. As a result of this deeper understanding of private insurance plans, I realiz ed the burden placed on breast cancer patients during negotiations for access to BRCA 1/ 2 genetic testing These negotiations are reminiscent of other anthropological studies (described later in this chapter) that applied "bargaining theory" in health ca re settings studies (Gans and Leigh, 2011). Finally, I recognized the value of using the digital storytelling method as a form of scholarly activism. Digital stories are culturally coherent ethnographies that provide a collaborative approach to bring att ention to health disparities and environmental injustices. Digital Storytelling As an anthropologist my hope is to elevate my research beyond criticizing and documenting the ill effects of private insurance companies and outcomes on barriers to genetic t esting. I also hoped my research and insights could be considered in the formatio n of policy that is more just and humane My goal is to develop policy interventions and educational tools that could impact private insurances to change policies that current ly prevent women from accessing genetic testing. I use the
! ! ! 36 ethnographies of the participants in thi s study to reveal obstacles in access to genetic testing ; but also used these narratives to create a digital story used to shape others' health behavior and influence policy maker decisions, including the individuals at insurance companies that are responsible for the company's coverage policies. I have found that digital and visual approaches to research help share knowledge and experience with a broader au dience and consequently can be powerful methodological tools Digital stories are three to five minute narratives that integrate images, video, audio, text, recordings of voice and music which are used to create compelling stories ( Gubrium and Turner 2011 ) These narratives are developed from the individuals' point of view and are told as personal narratives with the objective to tell a story that describes the individual's personal story. Unlike other digital media methods, including documentaries, digital stories are designed explicitly to amplify the voice of the ordinary person and the result is a departu re from even the most empathetic storytelling and documentary methods ( Burgess 2006 ) Digital stories are used to address health inequities and shed light on individual and communi ty understandings of experience. Throughout the process of researching and writing my thesis, I screened my thesis for a variety of individuals and groups; therefore, I had the opportunity to share the results of this study with other breast cancer patient s, scholars, policy makers and other who may be find this information valuable. I will continue to share this digital story and hope more policy makers will have an opportunity to view the digital story through online platforms
! ! ! 37 such as youtube.com, vimeo.c om and facebook.com, my digital story will contribute to changes in private insurance policies regarding genetic testing My reaction to the experiences I shared with the women I interviewed as a part of this research process surprised me The interviews w ere often emotionally demanding because I was asking participants to share intimate details about what it was like to be diagnosed and treated with breast cancer. Sometimes I found it difficult to sit acro ss from a woman as she cried without feeling uncomf ortable and feeling like I wanted to comfort her, but also knowing that she and I didn't have a close relationship. I chose to create my own digital story based upon these fieldwork experiences because it offered me three significant opportunities: ( 1) I w as able to share many of my research participants stories regarding why access to BRCA 1/2 genetic testing could improve their health outcomes; ( 2) The digital story highlighted opportunities for changes to private insurance policies that could include gen etic testing coverage for more breast cancer patients; ( 3) The challenges I encountered throughout the fieldwork and research process could be come learning opportunities for o ther scholars working on emotionally demanding projects. The final digital story and digital story viewing guide (Appendix A) demonstrate how the digital storytelling method is a tool for activism and seeks to understand and respect the uniqueness of every individual's experience. It also respects the perspective that I brought to this research project. Unlike positivist approaches to anthropology, digital stories are inherently reflexive in nature. Conventionally, reflexivity is based on the premise that unlike positivism,
! ! ! 38 reflexivity requires the observer to move with participants th rough their time and space and to embrace and discuss the idiosyncrasies of the unique ethnographic encounter ( Burawoy 1998 ) For anthropologists, the reflexivity of digital stories offers a chance to make the audience aware of how data is collected and what about the resear ch is personally relevant ( Stein 2012 ) One of the strengths of my digital story is that it provides the viewer with a sense of the relationship I formed with my research and with my research participants. Without this connection to my research participants, the di gital story would have been unsuccessful in adequately expressing their voices and their stories ; it is through their stories that I uncover the role that their private insurance played in their access to BRCA 1/2 genetic testing. Bargaining Theory A rec urring theme amongst the women I spoke with in my study were stories about long and difficult negotiations with their insurance companies over treatments and medications for which they had been denied coverage for, or not covered at the level they had expe cted. Additionally, all three of the women who were able to obtain insurance coverage for the BRCA 1/2 gen etic test told me that before they could receive coverage they had to appeal their insurance company's initial decision to deny coverage for the test based on an insufficient family history of breast cancer. The women who both did and did not receive coverage for the BRCA 1/2 test lamented that numerous phone calls, letters from their physicians, and exhausting negotiations did not necessarily result in a successful appeal.
! ! ! 39 Bargaining theory, or Nash Bargaining, has been used by mathematicians and economists for over 60 years, but is now being used to evaluate a number of problems in the social world including problems in health, medicine and insurance ( Brooks, et al. 1997 ; Gans and Leigh 2011 ; Lee 1990 ) Bargaining theory essentially seeks to understand how two actors will cooperate when non cooperation leads to pareto inefficeint results, or an unequal outcome ( Robinson 2004 ) Anthropologists working on policies have found this theory to be especially helpful as a basis to evaluate policy ou tcomes. Gans and Leigh (2011) applied bargaining theory to explain birthing and labor outcomes as a result of patient and physician negotiation s. The authors use bargaining theory to explain why fewer births happen on inauspicious days and weekends; they find that by appl ying the Nash bargaining theory physicians often have more "power" than their pat ients within the context of these negotiations ( Gans and Leigh 2011 ) Fornan and other researchers applied bargaining theory to evaluate patient negotiations for Medicare reimbursements for total hip and knee replacements ( Fornan, et al. 2012 ) The authors included information about the patient's education level and found that more educated patients were better at negotiating higher reimbursements for their surgeries when compared to patients with less education. The study suggests that perhaps an individual's level of education enables a woman to receive better insurance coverage as a result of her increased ability to negotiate Studies like the example s by Gans and Leigh (2011) and Fornan et al. (2012) influenced me to analyze explanatory forces within
! ! ! 40 the negotiations that breast cancer patient s have with their medical insurance companies especially when women are forced to appeal insurance denials of treatment coverage. The United State s economy is driv en by innovation and efficiency; the economy depends on competition to motivate improveme nts in t he health system's performance and as such, competition requires competitors. In the 1980s managed care insurance companies consisting primarily of health maintenance organizations (HMOs), emerged with a primary goal of reducing the costs of health care ( Robinson 2004 ) As more HMOs became players in the health insurance industry, HMO premium s became significantly reduced. Correspondingly, the employers who were pur chasing these insurance options became aggressive bargainers ( Maude Griffin, et al. 2004 ) The lower premiums "disc iplined" HMO insurance companies like Kaiser Permanente, by motivating the companies to maintai n consistently lower expenses in every aspect of their business, from administrative costs to patient treatment and medication costs. In fact, studies have found that hospitals are able to extract higher revenues from HMO insurance companies as compared to PPO insurance companies ( Lewis and Pflum 2013 ; Wu 2009 ) A possible explanation for the increased value in HMO insurance companies could be a re sult of the way PPOs and HMOs differ in their restriction of referrals. A surfeit of stud ies demonstrates that the outcome of the managed care (HMO) systems is a reduced frequency of physician referrals to specialists or for expensive treatment options ( Brooks, et al. 1997 ; Cartland and Yudkowsky 1992 ) In a study evaluating barriers to pediatric referrals, Cartl and and Yudkowsky found that HMOs limit access to care by encouraging
! ! ! 41 pediatricians to only use providers in the plan and restricting out of plan referrals ( Cartland and Yudkowsky 1992 ) Based on these studies, I hypothesized that the women in my study with HMO insurance would be more limi ted than the women covered with PPO insurance in their ability to negotiate with their insurance for coverage of the BRCA 1/2 genetic testing. Differences in how PPOs and HMOs reimburse health care providers may part ially explain differences in a provider s likelihood of referring a patient to more expensive treatment plans or testing, such as BRCA 1/2 genetic testing. The literature strongly suggests that HMO insurance companies provide physicians with significant incentives to keep health care expenses do wn by limiting referrals for more expensive care options; mean while PPO insurance companies justify higher costs and co pays by suggesting providers place customer service above reducing the costs of patient care. These distinctive approaches to patient ca re will impact a patient's ability to access certain medical treatments. Bargaining theory studies suggest that patients with a PPO insurance may have more power in negotiating coverage for BRCA genetic testing than patients with HMO insurance plans becaus e providers are incentivized to provide patients with customer service based health care rather than avoiding high cost treatments. More simply put unless patients meet high threshold requirements, HMO insurances are more likely to deny coverage of expens ive testing, such as BRCA genetic tests, because the insurance companies are more concerned than PPO s with maintaining consistently low health care expenses.
! ! ! 42 Chapter Summary This study uses Political Ecology of Health (PEH) and Structural Vulnerability th eoretical frameworks to evaluate differences in breast cancer patients' access to BRCA 1/ 2 genetic testing. These frameworks a re useful in comprehending how HMO and PPO private insurance policies are a product of the U.S. political economy, culture, and e nvironment and correspondingly promote or limit access to BRCA 1/ 2 genetic testing. Private insurance policies are consequently tied to unequal health outcomes for breast cancer patients. Additionally, bargaining theory is used in this study to examine th e negotiating structure of HMO and PPO private insurance policies in order to determine how much bargaining power a breast cancer patient may have in appealing insurance denials for BRCA 1/ 2 genetic testing. Finally, digital storytelling is a methodologic al tool for scholars to take an activist approach to their research and work. A digital story was created as part of this research in order to share the results of this research with a wide audience with the goal to impact changes to private insurance poli cies that currently limit coverage of genetic testing for breast cancer patients.
! ! ! 43 CHAPTER IV RESEARCH METHODS & ANALYSIS Preliminary Research My interest in the subject of access to BRCA 1/2 genetic testing grew out of conversations and interviews with women who have survived breast cancer As part of a graduate level anthropology class on the theory of ethnography at UC Denver I chose to create a digital story on a personal topic called It's Not Like I Have $3000 Laying Around The project incorporate d several theories of ethnography, including digital, reflexive and public policy ethnography. After ha ving a genetic test for an auto immune disease, I wanted to learn more about other people's experiences with hereditary diseases and genetic testing. Sinc e the BRCA 1/2 genetic tests was one of the earliest genetic tests developed, I hoped to better understand why a woman with breast cancer may or may not be in terested in a genetic test for the BRCA 1/2 genes Surprisingly what I learned was that almost ev ery woman I spoke with was absolutely positive that she wanted to have a genetic test. However, many of the women I spoke with informed me that they were denied coverage for the genetic test by their insurances because they did not meet their insurance's c riteria for coverage. Roseanne, a 59 year old Hispanic woman, who has Kaiser insurance (HMO), was extremely frustrated because Kaiser refused to pay for her genetic test. Roseanne explained that the high cost of the BRCA 1/2 test meant that she
! ! ! 44 could not a fford to pay for the test out of pocket. Her frustration and anger motivated me focus on understanding the obstacles that prevent women from accessing genetic tests for breast cancer In September 2012, I conducted a semi informal interview with Dr. Cather ine Klein, the Director of the Hereditary Cancer Clinic at the Anschutz Medical Campus in order to gain a clinical perspective on the issues regarding access to BRCA 1/ 2 genetic tests. The Hereditary Cancer is part of the University of Colorado Cancer Cen ter; the clinic's aim is to provide evaluation and preventive treatments for patients who have a higher than average risk of developing cancer based on their family or personal history ( Hereditary Cancer Clinic of Anschutz Medical Campus 2013 ) One of the primary services at the clinic is genetic testing and counseling. According to Dr. Klein, the majority of patients seen at the Hereditary Cancer Clinic are seen for risk of hereditary breast and ovarian cancer. She explained that an oncologist or primary provider usually refers most of the patients she sees at the hereditary cancer clinic based on a patient's medical family history Thus, most of these patients in a way were "pre screened" and could possibly have had the genetic test pre approve d by their insurance company. Consequently, the hereditary cancer clinic patients who receive genetic counseling and BRCA genetic testing are rarely denied coverage and Dr. Klein commented that she's seldom seen a patient pay for $3500 test "out of pocket" Dr. Klein is familiar with insurance thresholds for the BRCA 1/2 genetic tests that deny coverage unless the patient meets certain requirements within her medical family
! ! ! 45 history. According to Dr. Klein Kaiser Insurance (HMO) has a 10% threshold, meaning that at least 10% of a woman's family must have been affected or have died from breast and/or ovarian cancer in order for them to qualify for insurance coverage for the genetic test ( Beattie, et al. 2012 ) This threshold is much higher than other insurances that will cover the test if the woman's family history meets a 5% threshold. Dr. Klein shared a specific story about a woman who had recently been diagnosed with breast cancer and had a sister who also suffered from the disease; however, the woman's Kaiser insurance refused to pay for the BRCA genetic test because she didn't meet the Kaiser threshold for coverage. The patient paid for the test h erself Dr. Klein noted that the particular patient was an engineer who was un phased by the high cost of the test. Dr. Klein estimated that of all the patients seen at the clinic, about 90% of them are white and of the remaining 10%, about 5% are Hispan ic/Latino and 5 % are African American/Black. She was not sure why so few minorities are seen at the clinic for genetic testing, but she suggested that under representation could be a result of socio economic fac tors. L ess access to care means that family h istories among marginalized groups are not being collected appropriately by clinicians The Introduction briefly explained studies ( Guttmacher, et al. 2004 ; Murthy, et al. 2011 ) demonstrating that relying o nly on a patient's family medical history may not always be the most appropriate method to interpret a person's risk of disease. Therefore, patients may not be referred to the clinic because their providers are un aware of the possibility that they may be at risk" for a BRCA mutation.
! ! ! 46 I recruited eight research participants from different ethnic, cultural and socio economic backgrounds including Hispanic, Caucasian and mixed ethnic backgrounds None of my participants was only from an African American or Asian American background s Rather than focus my analysis on ethnicity as an explanatory factor I chose to focus on the role of private insurance policies in the role of access to genetic testing for women with breast cancer. Recruitment and Interviewing Methodology Design and Development of the Interview Guide The ethnographic approach used in this study enabled me to gain an in depth appreciation of the barriers including private insurance policies and limitations of bargaining power that breast canc er patients encounter when accessing genetic testing for BRCA 1/2 genes Traditionally, ethnographic methods meant that anthropologists would participate in long term stay s at an "exotic" field site and collect data on study participants in their "natural settings" Ethnographies were developed using participant observ ation, field notes, interviews and surveys with informants in the community. Thus, "fieldwork" allowed anthropologists to assemble a deeper appreciation of the culture they studied. For anthr opologists in 2013 however, field site may be any place where the "fieldwork" is being done ( Gupta and Ferguson 1997 ) and for the purposes of this study, the field site was primarily the homes where the study participants lived. In order to develop an ethnography of inclusion with rese arch participants of the study, the following data collection methods were used:
! ! ! 47 Semi Structured Interviews Participant Observation Field notes Unlike quantitative research that often relies on large data sets that can be generalized to a larger population, the strength of qua litative research is that it can provide detailed and nuanced information about a particular experience. For example, quantitative studies on the use of genetic testing among different racial and ethnic minorities have demonstrated that these groups access genetic testing at a lower rate than whites/Caucasians ( Suther and Kiros 2009 ) However, the conclusions of these quantitative studies rely on assumptions and la ck the social context for why or why not individuals are able to access genetic testing. Instead, the significance of the Political Ecology of Health ( PE H ) approach is the integration of multiple perspectives of an individual's relationship to the economy politics, environment and culture that can contextualize the experience and may reveal a deeper awareness of how breast cancer patients access genetic testing. PEH evaluates multiple factors such as the person's socio econ omic status and education leve l that may be involve d in a phenomenon; therefore, ethnographic methods were a logical approach to this research topic Ethnographic methods are used specifically to discover what people actually do and the reasons they give for doing it, before we an assi gn to their interpretations our own explanation drawn from professional, academic or personal experience ( LeCompte and Schensul 1999 ) While I planned to rely on my own
! ! ! 48 participant observations and field notes from the time I shared with research participants, the pri mary data collection method was the semi structured interview. I did my best to develop an interview guide that effectively captured key themes in the research design and would provide the research participants with the freedom to share as much as possible about their personal experience with health care, health insurance, breast cancer and genetic testing. Based on my preliminary research interviews with Roseann e and Dr. Klein conducted in fall of 2012 I developed a list of a priori factors that likely a cted as barriers to BRCA 1/2 geneti c testing. I also wanted to leave the door open for the discovery of emerging factors that had not previously been identified as potential barriers to genetic testing. I chose to use in depth, open ended interviews to exp lore domains about which little is known. The open ended interviewing format allows researcher the maximum amount of flexibility to explore any topic in depth and a way to cover new topics as they arise ( LeCompte and Schensul 1999 ) In dept h, open ended interviews enab led me to use participant s own words within the presentation of the discussion of the data and draws on a polyphonic approach which allows differing belief s and opinions to be expressed ( Marcus and Fischer 1986 ) The final interview guide used duri ng interviews with participants ensure d that I covered all of the questions/topics that I felt were most important to discuss with participant s Usually these questions are drawn from my research study questions and from theoretical models ( LeCompte and Schensul 1999 ) but fortunately I could develop
! ! ! 49 my questions based on preliminary research interviews. I knew that I wanted to ask my research participants focused questions on a wide variety of health, cultural, environmental, economic and political topics as they perta ined to her breast cancer experience. The final interview guide (Appendix B ) included questions and associated probes that could elicit the narratives and stories of participants that could be used to gather information from their own perspectives Follo wing each interview, I would review my field notes and the interview transcript to identify interview themes that were consistent with previous interviews and to discern whether novel themes emerged in the interview. The guide was dynamic and was adapted a s the study progressed. For example, as I began to notice that t he research participants were all privately insured, I added additional questions specifically about their experience with private insurance. I also followed up with a few of the first women I interviewed to ask them for more information about their experiences with insurance coverage I included questions related to: Bargaining/negotiations with insurance for coverage of BRCA 1/2 genetic testing or other breast cancer treatments The role of t heir provider /physician in negotiating for breast cancer treatments. If they had to negotiate or appeal an insurance coverage decisions, what was the length of time between negotiating and final outcome? The ability to return to participants with new ques tions and to amend the interview guide throughout the data collection process is the strength of ethnographic research methods. Instead of research participants becoming a "subject" or a "number within a
! ! ! 50 study, the participants' perspectives are valued an d are their voices heard throughout the research study analysis. Design and Development of Recruiting Materials One of the primary objectives of this study was to gather perspectives from breast cancer survivors of many different ethnic, cultural and socio economic backgrounds. To recruit a diverse array of participants to my study, I developed a flyer that could be distributed to local organi zations, groups and individuals. The flyer explained that the study was aimed at breast cancer survivors between the ages of 35 65 who were willing to participate in a n interview about their experience. I included my contact information and offered a participation incentive of a $10 gift certificate. This research study was self funded, so I was limited in my ability t o offer larger participation incentives. Sisters of Color United in Education (SOCUE) and The African Community Center (ACC) were identified as two Denver Metro Area community organizations that focus on issues pertaining to the education and health of f emale minorities and could potential help me to recruit research participants. SOCUE and the ACC allowed me to post the flyer on their advertising bulletin boards. Next, I spoke with two breast cancer survivors in my personal network who were eager to dist ribute the advertising flyer to other breast cancer survivors who may be interested in participating in the study. Finally, I am a member of "Stapleton Moms," a local online community group and I posted my recruitment flyer on the group's advertising homep age (Appendix D) These three different recruitment strategies often resulted in snowball /chain referral sampling. Chain referral can be
! ! ! 51 combined with randomized sampling techniques as a way to incr e ase the generalizability of the study's results to other populations or groups ( LeCompte and Schensul 1999 ) Chain referral is a particularly useful way to ensure that research participants will share at least one or several characteristics tha t are important to the study. I wrote a script (A ppendix C ) to use when women c a lled me to respond to the recruitment flyers. This script was designed to offer potentially interested participants more information about the study and about what they could expect during the interview. It was also used to pre screen participants and to m ake sure they qualified for the study. I asked the following three questions: How old are you? Have you ever been diagnosed with breast cancer? Have you had a genetic test for the BRCA 1 and 2 genes, the genes that are associated with hereditary breast ca ncer? If the woman qualified for the study and decided that she wanted to participate, we decided on a safe, private and convenient location where we would conduct the interview. I planned to conduct over twelve interviews, but based on time constraints and how long each interview ended up lasting, I conducted interviews with eight women. In total, I conducted over 26 hours of interviews. Each interview on average lasted about three hours. I audio recorded and transcribed these audio recordings. Field not es were taken during interviews and I made sure to note impor tant sections of the interview, but I also attempted to limit the amount of field notes during the actual interview in order to
! ! ! 52 maintain rapport with the research participant. For this reason, au dio recording of the interviews was especially helpful. IRB Approval Process My research project included human subject participation and therefore, I was required to receive project approval from the University's Institutional Review Board prior to begin ning the collection of data. Human subject research at the University of Colorado Denver is under the jurisdiction of The Colorado Multiple Institutional Review Board (COMIRB). This is an administrative body established to protect the rights and welfare of human research subjects who are recruited to participate in research activities conducted within the institutions of the University of Colorado Denver and its affiliates (COMIRB, 2013) Since I wanted to limit the number of fi eld notes I took during interviews, I planned to audio record each interview I also intended to develop digital stories w ith some research participants, which involves both audio and digital recordings. Audio and video recordings meant that my research re quired an "expedited" review before it could be approved As part of my COMIRB submission, I included a full methodological research plan that made provisions for the monitoring of data collected in order to ensure the safety of my research participants. In December 2012, I submitted the following COMIRB application documents to the COMIRB review committee: Application for Protocol Review Full Research Project Protocol Attachment F Requesting Expedited Review
! ! ! 53 Attachment J Pregnant Women and Fetus A ttachment M Request for Waiver of Consent Attachment O Request for Waiver of HIPPA (The Health Insurance Portability and Accountability Act of 1996) Combined Consent Form and HIPPA Biomedical Research Fee Waiver Form HIPPA B Enrollment Form Photo and Video Recording Release and Consent Form Research Study Interview Guide Script for Participant Pre Screening Research Study Recruitment Flyer Curriculum Vitae of Primary Investigator My COMIRB application was accepted without revisions and I received my Certificate of Approval (Protocol 12 1644) on January 8th, 2013. Data Collection After receiving COMIRB approval I posted and distributed study recruitment flyers. Within two weeks of posting these flyers, I received interest from about ten breast cance r survivors who wished to participate in the study. Some of the women that I interviewed early in the data collection period forwarded the recruitment flyer to other women they knew who had been diagnosed with breast cancer. On average, intervi ews lasted a bout three hours, but some were as long as four hours. Interviews were conducted either at my home office or at the participant's home. The only requirement for the interview location was a safe, quiet and secure place where the woman felt comfortable talk ing about personal topics and life experiences. ! Throughout the two month data collection period 24 women expressed interest in participating in the study; of these, eight women completed the full interview. The
! ! ! 54 remaining 16 women either chose not to resp ond to repeat follow up attempts to schedule an interview or decided that they did not feel comfortable participating in the study. Reasons given for not wishing to participate were: $%&'()'*+,-./!0"+1!*/2/,*&1!+'3"&!45/%/+"&2!,%67'*!5/%/+"&!+/2+"%58 9/%5+ 1!')!"%+/*#"/07+"(/!&'(("+(/%+ :'+!3*/3,*/6!+'!+,.;!,-'<+!+1/"*!-*/,2+!&,%&/*!/=3/*"/%&/ ! The objective of this study was to understand barriers to BRCA 1/2 genetic testing; however, it is crucial to note that a BRCA 1/2 genetic test was not a requirement for participation. In order to identify barriers to genetic testing, I wanted to included breast cancer survivors who both had the BRCA 1/2 genetic test and those who did not. As part of the pre screening process, I did inform potential participants that the objective of this study was to discuss BRCA 1/2 genetic testing (Appendix C) it is possible that participants who chose to participate may have already been familiar with BRCA 1/2 genes and had either a preconceived positive or negative bias on the t opic. Prior to each interview, the participant and I reviewed what to expect during the interview, including potentially uncomfortable questions and topics about her breast cancer experience. I made sure to explain that participation was completely option al, any questions could be skipped and the interview could be stopped at any time. Informed consent was obtained and a copy was provided to the participant. Each participant was asked for permission and signed consent to audio record the interviews and all eight of the women agreed Field notes were also taken throughout the interview and immediately following each interview in order to summarize all of the information gathered during the
! ! ! 55 interview experience. Field notes written after the interview also in cluded my own reactions and thoughts about each interview. I made notations of places where information was missed in the field notes in order to review these sections in the recorded interviews. The Inte rview Question Guide (Appendix B ) was utilized to d irect the interview and was designed to discuss topics that progressed from general life and health experiences to more specif ic experiences. Nevertheless, depending on the participant and the flow of the interview, the order of the questions could vary. F or example, sometimes a topic that would have been addressed later in the interview was discussed earlier because the participant would bring them up on their own. Usually, I would begin interviews by talking about the participant's general experience with breast cancer and what their reactions were throughout their battle with breast cancer. In my interview with Hannah, she was excited to talk about the BRCA 1/ 2 genetic testing and wanted to share her story with me at the beginning of the interview. In he r case, we ended up talking about her story with genetic testing first and then I navigated the interview address other questions from the interview guide. Additionally, if there were topics that were critical to their breast cancer experience but were not initially a part of the Interview Question Guide (Appendix B) I made sure to address these topics with the participant. Many times, flexibility within the interview helped me to identify emerging themes within each of the participant's experience with br east cancer and genetic testing including the significant role of
! ! ! 56 insurance in breast cancer treatments ( Neuman 2003 ) The data collection period occurred from January 14, 2013 until March 20, 2013. Five of the eight interviews were condu cted in the participant's home and this offered an opportunity to include participant observation as part of the data collection process. Interviews offer ethnographers other material besides the core interview that can be drawn on when analyzing research ( Agar 1996 ) The chance to observe research participants within the context of their home provided me with deeper insight about the participant's life experience. I was able to observe her family, culture, socio economic st atus, environment and political connections. Thus, observation and interview mutually interacted to provide an enriched ability to understand the participant's interview responses ( Agar 1996 ) Regardless of where the interview was conducted, this study included deeply personal questions about a woman's experience with breast cancer. Many of the questions touc hed on the woman's relationship with her family, the emotional stress of being diagnosed with a serious condition, coping with the idea of death and financial pressures to the woman and her family. Some of the stories that participants shared were more pow erful when the interview was conducted at the woman's home. For example, as Hannah shared what it was like to watch her five year old son realize that his mom was sick, a picture of her son's smiling face was hung on the wall across from the table where we spoke: All of these appointments were happening when my oldest son was at school we didn't tell my oldest son everything at first because we were still sort of processing everythingbut his teacher pulled me aside and said
! ! ! 57 that his behavior had changed a t school, that she would see him crying at school and as a mom, it just makes me feel bad. She would see him crying at school and she would ask him why are you sad' and he would either say I'm sad' or I'm tired' I was surprised by my own reaction to t hese interviews and this response became the premise for the digital story Kleenex, which I created as a part of this thesis project (see: Chapters on Theoretical Framework, Digital Story section of this chapter and Appendix A). I found an important part of building trust and rapport with the women in this study who shared extremely personal and difficult stories of their experience with cancer was to share some of my own experiences with health care and cancer. As a way to introduce my research to the wom en intere sted in the study, I often emailed them a link to another digital story I made about my father in law's diagnosis with cancer called Simple Question, Big Impact By sharing my own digital story, I was able to develop a be tter rapport with partici pants. When I sent the link to my digital story, Christy responded to me in an email: LOVED your video. Short, insightful, creates awareness and forces one to t hink. (What a great question!)." In order to ensure that I had captured the essence of the wo men I interviewed, I also asked for input and feedback from research participants on the digital story that was created as a part of this research study. Data Analysis Following each of the interviews, field notes were typed and recorded interviews were t ranscribed. The names of family members, friends or medical providers were changed during this process in order to maintain confidentiality. I highlighted sections of
! ! ! 58 each interview that included important topics or emerging themes that could be used to re vise the interview question guide used in later interviews. Field notes and transcripts were then hand coded using codes that were developed inductively from the notes and transcripts using the coding methods developed by LeCompte and Schensul (1999). Aft er coding each interview, the codes from each interview were compiled along with codes from previous interviews in order to reduce repetitive or unnecessary codes and also compared to codes and themes from existing literature. If a theme from one of my res earch interviews reflected a priori themes from previous literature, these code names were changed to the code names used in this literature. For example, for participants who believed BRCA 1/2 testing could offer them insight into their risk for other fut ure cancers, I initially used the code knowledge of risk", but changed the code name to "perceived benefit" which was used in previous studies on the perceived benefits of BRCA 1/2 ( Bluman, et al. 19 99 ; Cameron and Reeve 2006 ) The final list of codes can be found in Table 4.1.
! ! ! 59 Table 4.1 Final Code Names Personal History Psychological State Health History: Self Communication Physician/Prov ider Health History: Family Perception: BRCA Testing Knowledge: Breast Cancer/Cancer Perception: Cancer Treatment Knowledge: BRCA Perceived Benefit: BRCA Testing Knowledge: Genetic Patents Perceived Risk: BRCA Testing Insurance Coverage: Cancer Tre atments Treatment Decision Insurance Coverage: BRCA Education: Breast Cancer Insurance Coverage: Negotiation Education: BRCA Testing Role of: Physician Overall Cancer Experience Role of: Spouse Initial Diagnosis Experience Role of: Family Member Confl ict: Physician Role of: Friend Conflict: Insurance Company Role of: Insurance Company Digital Storytelling Methodology Initially, the goal of this project was to work with some of my research participants to develop their own digital stories about th eir experience with breast cancer and BRCA 1/ 2 genetic testing. As a result of thesis time constraints I chose instead to create my own digital story about what it was like as a beginning anthropologist to engage in emotionally challenging interviews tha t included conversations about life, death and the human body Apart from sharing my own story, I envisioned my digital story as a tool to also share my research participant s experience with BRCA 1/ 2 genetic testing and breast cancer The stories of the women who participated in my story are compelling and can impact how f ederal and insurance policy makers view their role in making genetic testing more accessible to breast cancer patients. Digital stories are designed to be short, to the
! ! ! 60 point and should have a captivating story line that the audience can co nnect with. D igital stories are inherently designed to reach a wider audience than research papers or policy briefs. The digital nature of these stories means that they can be sent as a web link sent o r file attachment via email or played on a TV/DVD player. I had previously created digital stories and found this methodology to be a powerful way to connect with others which is why I sent research participants a link to a digital story I created about my experience coping with my fa ther in law's cancer diagnosis. I credit my digital story with helping to build rapport with the women I spoke with and part of what made it easier for me to ask them about the ir own experiences with cancer. Several of the pa rticipants also expressed interest in making their own digital story. The first step in developing a digital story is writing a script. Digital stories are created from the participants personal view point and are told as personal narratives. The stories are crafted with a particular audience in mind and with the objective to connect to the wider conditions and circumstances in which they are situated ( Gubrium 2013 ) I knew that I had a large audience in mind, including other breast cancer pa tients, health care providers, f ederal and insurance policy makers, researchers, and others interested in the connection of genetics to health outcomes; it was difficult to develop a two to three mi nute script that would be meaningful to such a diverse audi ence. W riting a digital story script usually requires se veral iterations and revisions. I first write a longer version of the story I hope to create and then revise and edit the story until it is cut from 500 words to 250 words. For the digital story in this project, I relied on the guidance of my
! ! ! 61 advisor, Marty OtaÂ–ez, and Daniel Weinshenker, the Rocky Mountain/Midwest regional director for the Center for Digital Storytelling. The final script is available in Appendix A and when recorded was 2 minutes and 30 seconds in length. As I developed the script, I also imagined music and images and video footage that I wanted to include in the digital story. The digital storytelling process teaches researc hers to consider the timing and placement of elements of their stories, including the order of the parts of their story and the interaction between all of the story elements ( Gubrium and Turner 2011 ) I took photos of all the images in my digital story and recorded video that I wanted to include. By utilizing my own photography and videography, I had the flex ibility and freedom to incorporate visual elements specifically tailored to the digital story. Finally, I used a song that I felt matched the digital story script and images through the copyright f ree website creativecommons.org. Once my script, music and images were finalized, I audio recorded the script using a X LR microphone and audio recording program. The final step of the digital story process is incorporating all of the components into the nonlinear video editing application, Final Cut Pro X Final Cut allows the user to edit the audio recording of the script, the music, the images and the video into a final digital story format. After completing the first version of the digital story, I posted the video on youtube.com. I sent the video link to my ad visor, Dr. OtaÂ–ez, several research participants, and a few of my colleagues in the graduate program of Anthropology at UC Denver and asked for feedback on the following:
! ! ! 62 Does the story make sense? What do you think of the video, images and music? What q uestions do you have following the video? What is your overall reaction to the video? I integrated the feedback I received and developed two more versions of the digital story until I felt that the digital story conveyed the three initial ob jectives ( 1) t he digital story shared my research experience working with emotionally difficult subjects, ( 2) the voices of my research participants were voiced and their experiences with private insurance and access to BRCA 1/ 2 genetic testing were expressed and ( 3) t he story describes several suggestions directed at private insurance policy makers that could make genetic testing more accessible for breast cancer patients. Additionally, I developed a viewing guide (Appendix A) that could be distributed to viewers of th e digital story to provide background on the project, links to additional information about the topics covered and provocative questions to invoke viewer feedback and response. The final digital story was formally presented at the Society for Applied Anth ropology (SFAA) 2013 Conference as part of a p anel on digital storytelling as a method of academic scholarship and on another panel on anthropological breast cancer research. Additionally, I presented the digital story at the Western Social Science (WSS) 2 013 Conference as part of a panel on social science research on health disparities These conferences offered the opportunity to disseminate the research study results with scholars interested my research topic and gave me the chance to receive feedback on
! ! ! 63 what were the most effective aspects of the digital story. This feedback is valuable as I continue to grow as a digital storyteller and anthropologist. Chapter Summary The objective of this study was to determine how breast cancer patients may be able to gain increased access to BRCA 1/2 genetic testing by identifying potential barriers that may exist. The Political Ecology of Health (PEH) approach relied on analysis of economic, political, environmental and cultural factors that may play a role in promot ing or limiting access to genetic testing. Data collection included semi structured interviews, field notes and participant observation of eight breast cancer survivors were used to develop ethnographies of the study participants. This data collection was used to create my own digital story reflecting upon my fieldwork experience. The ethnographies of inclusion from the study participants were analyzed and a priori and emerging themes were identified. My analysis of the ethnographies revealed that the part icipants of this study were all covered by private insurance (either HMO or PPO) and that private insurance policies play a role in a breast cancer patient's access to BRCA 1/2 genetic testing.
! ! ! 64 ! CHAPTER V RESULTS BREAST CANCER PATIENTS' OBTAINING B RCA 1/2 GENETIC TESTING Demographic Characteristics of Participants Demographic characteristics are helpful in providing background and a n overview of the participants of this study. Eight women were interviewed in January 2013 March 2013. Participants r anged from 38 to 64 years of age (Table 5 .1). Three of the women self identified as either "Caucasian" or "White" and the remaining five participants self identified as either "Hispanic" or "Mixed Hispanic" ethnicity. Nobody declined to answer this questio n. All of the participants, with the exception of one (Susanna), were currently married and all of the women had at least one child All of the participants had completed at least a high school level of education, four participants had completed a bachelo r's degree and two of the participants had received graduate degrees. Each woman was privately insured during her diagnosis and treatment for breast cancer; five of the participants had PPO insurance and the remaining three all had HMO health insurance thr ough Kaiser Permanente The participants all accessed private insurance coverage through an employer sponsored insurance program. The employers were responsible for choosing the type of private insurance plan provided to employees; participants indicated that were not provided with an option of choosing between a PPO
! ! ! 65 and a HMO private insurance plan. Three out of the eight women had received BRCA 1/2 genetic testing and all three of these women had the test paid for by their insurances. Additionally, the t hree women who had insurance that covered the cost of the BRCA 1/2 genetic test were insured by a PPO plan. Table 5.1. Summary of Research Participants Name (Pseudonym) Age Ethnicity* BRCA 1/2 Test Insurance** Education Level Lorena 60 HM No (Desired) H MO Kaiser High School Janelle 53 H, C Yes PPO Blue Cross/Blue Shield B.A. Susanna 64 H, C, NM Yes PPO Blue Cross/Blue Shield M.S. Christy 40 C No (Not Desired) PPO United B.A. Hannah 38 C Yes PPO Cigna M.A. Dora 62 HM No (Desired) HMO Kais er High School Ellen 59 C No (Not Desired) PPO United B.A. Arianna 45 H, AA No (Desired) HMO Kaiser B.A. Ethnicity *: H= Hispanic, HM = Hispanic from Mexico, C = Caucasian, AA = African American **Insurance**: HMO = Health Maintenance Organiza tion, PPO = Preferred Provider Organization The name of the insurance company is listed second.
! ! ! 66 Associated Risk of Future Cancer Diagnoses and BRCA 1/ 2 Genetic Testing Six of the eight women interviewed indicated that they had either received BRCA 1 /2 genetic testing or desired the genetic testing. Christy and Ellen, the two women in this study that were not interested in BRCA 1/2 genetic testing said that they had heard about the genetic testing but were not interested in it because they felt cert ain that they did not have a hereditary form of the breast cancer. Christy's physician offered her the BRCA 1/2 genetic testing, but she explained to me : I came from a strong line of Norwegians and I couldn't think of one family member that even had any ty pe of cancer. I am fairly certain that the environment played a role in my cancer, especially because I started learning about things like BPA [bisphenol A] and other environmental factors that are in our lives and I think this is really why I got breast cancer. Of the six women who desired BRCA 1/2 genetic testing three had not received the genetic test and explained that their insurance refused coverage for the test and they were unable to pay for the $3500 test out of pocket. All six of the participa nts who desired BRCA 1/2 testing mentioned that a major motivation for wanting to get tested was to better understand their own risk for future breast and ovarian cancer. These women shared the concern that a positive BRCA 1/2 genetic test could imply that their children, grandchildren and/or other relatives could also have an increased risk for cancer and could also carry the BRCA 1/2 genetic mutation. A number of prev ious studies have discussed ( Bradbury, et al. 2007 ; Dancyger, et al. 2010 ; Daniels, et al. 2011 ; Hallowell, et al. 2005 ) the motivations and attitudes of breast cancer patients and their family memb ers towards BRCA 1/2 genetic testing. The
! ! ! 67 studies describe that many breast can cer patients feel obliged to undergo genetic testing for others in their family; this idea was reiterated through the voices of the participants in my study. Susanna, a 64 year old woman with one daughter a granddaughter and a niece, explained that after suffering from breast cancer twice, she worried about the potential that her loved ones could suffer the same breast cancer diagnosis Susanna felt especially anxious about her niece 's risk for carrying the BRCA 1/2 genetic mutation because her mother (Susanna's sister), had recently passed away from the disease She expl ained, "When I learned about the potential for hereditary breast and ovarian cancer, I immediately called my niece and told her sh e should look into testing Susanna's own daughter was not interested in BRCA 1/2 genetic testing and as a result, Susanna wa s determined to undergo BRCA 1/2 testing herself in order to determine if her daughter may be at a higher risk. The women in my study who expressed interest in the BRCA 1/2 genetic test commented on the value of the testing for both female and male relat ives. Breast cancer is often portrayed as a woman's disease, but every year more than 2200 men in the US are diagnosed with breast cancer and many of these cases have been linked to BRCA 1 or BRCA 2 genetic mutations ( Ottini, et al. 2012 ) Male carriers of BRCA 1/2 genetic mutations may be at risk for other types of cancer, including prostate and pancreatic cancer ( Liede, et al. 2004 ) Hannah, Janelle and Christy were study participants with only male children; they expressed as much concern for their children's risk of carrying BRCA 1/2 mutations as mothers of female children Hannah rationalized her concern for her
! ! ! 68 son's cancer risk by explaining that even if he didn't get breast cancer, he could pass the gene onto future granddaughters. Research exploring reasons for BRCA 1/ 2 testing among women who have not yet been affected by cancer has found that women who are referred by thei r clinicians may choose not to undergo testing due to fear tha t the test could cause unnecessary anxieties over their health ( Armstrong, et al. 2000 ; Armstrong, et al. 2003 ; Cameron and Reeve 2006 ) Conversely, women already diagnosed with cancer, they may be more anxious about the possibility they could be at risk for another cancer diagnosis in the future ( Bluman, et al. 1999 ; Cameron and Reeve 2006 ; Clark, et al. 2000 ) Several of the women I spoke with noted that a BRCA 1/2 genetic mutation is associated more often with breast and ovarian cancer, but may also be responsible for colon, pancreatic or other cancers Acco rding to Lorena : None of my doctors ever told me that if I had a genetic mutation that this would mean that I could be at higher risk for other cancers, like colon cancer or pancreatic cancer. I had to figure this stuff out on my own because nobody told m e. When I found this out, I became even more worried about the [ BRCA 1/2 ] gene and really wanted to get the test. Lorena's fear that she could again suffer from cancer was shared by all of the participants in the study. Christy and Janelle mentioned that they were friends with other breast cancer survivors who had been in remission for several years when their breast cancer unexpectedly returned. Christy and Janelle believed that a negative BRCA 1/2 test could help to allay fears that breast cancer could return Susanna felt similarly and having already survived two breast cancer diagnoses, she assumed that the BRCA 1/2 test could
! ! ! 69 help her make important decisions about lifestyle changes and preventive medical treatments that keep her from suffering from a third cancer diagnosis. Cancer Treatment Decisions In the past two or three years scientists have been able to develop tumor specific cancer medications and treatments; consequently, the field of oncology has begun to move towards a more "pers onalized" approach to medicine O ncologists now prefer to treat their patients' cancer with tumor specific surgeries, chemotherapy and pharmaceutical interventions. There is a growing belief amongst oncologists that treatment focused genetic testing (TFGT) can be v aluable for many breast cancer patients and almost all ovarian cancer patients as a way to provide specific treatment therapies for each patient ( Meisera, et al. 2012 ; Trainer, et al. 2010 ) In 2013 oncologists treating breast cancer patients may ask a woman to have a BRCA 1/ 2 genetic test when first diagnosed with cancer; these testing outc omes may have influence on the treatment decisions of these newly diagnosed patients ( Trainer, et al. 2010 ) The "personalized" medicine approach to cancer treatments is particularly apparent in the stories Janelle and Hannah, who were more recently dia gnosed with breast cancer When an individual is diagnosed with breast cancer often times this shocking news is accompanied by a flurry of information about current cancer treatment options and patients are asked to immediately begin making decisions about which options they prefer. Arianna recalls the week after she was first diagnosed:
! ! ! 70 When my doctor told me that I had breast cancer, she immediately referred me to an oncologist in the same [Kaiser] medical building and I had an appointment with the onco logist just two hours later. The oncologist spent time going through my pathology results and then gave me a binder of information about breast cancer and told me I should review it and consider the different surgery options and things like chemo and radia tion. I couldn't even get myself to open the binder. I gave it to my husband and he read through it and then summarized everything for me because. because, I didn't even know where to start or what I was supposed to do. Often times, patients are asked to make agonizing treatment decisions and according to the women in this study, the hardest treatment decisions had to do with breast surgery. There are two primary types of breast cancer surgery: b reast conserving surgery (BCS), or a lumpectomy, a less ag gressive breast cancer surgery that only partially remove s breast tissue and tumor cells A mastec tomy is a more aggressive approach that at will remove all of the breast tissue ( Waljee, et al. 2011 ) One study participant, Christy, describes the emotional struggle she had deciding between trying to keep her br easts, which for her represented a part of her "femininity", versus choosing a surgery that could potentially offer her a better cancer outcome: I had two tumors and I was hoping the surgeon would tell me that a lumpectomy would encircle both tumors, remo ving enough tissue around to get a clean and cancer free margin. But that would amount to half my breast. A mastectomy was my only option. I was shaken and disappointed. I couldn't handle this idea [of a mastectomy] emotionally. I was sad and devastated, b ut I was hopeful that I could be "cured". Christy's challenging decision between surgical options is why personalized medicine approaches that utilize an individual's tumor specific information can help patients feel better about their cancer treatment d ecisions.
! ! ! 71 BRCA 1/2 genetic testing can help to identify high risk patients that may benefit from a bilateral mastectomy rather than less aggressive surgical options ( Ziogas and Roukos 2009 ) For instance when Hannah was diagnosed with breast cancer about two and half years ago she did not have a significant f amily medical history of cancer but both her onc ologist and oncological surgeon suggested that she get a BRCA 1/ 2 genetic test Her physicians felt that the BRCA 1/ 2 genetic test should be done immediately as a way for her to decide between breast surgery options: The doctor thought I should get the BR CA [genetic] testing. I didn't know if there was a chance I had the genes, but if I did have the genes, then I would have had a double mastectomy surgery instead of just a single mastectomy on the side where my cancer was ; so then that would impact the rou te of care and my treatment plan for the cancer. Janelle's experience with BRCA 1/ 2 genetic testing is another excellent example of the importance of this technology 's effect on the decision making process for breast cancer patients. In the Introduction, we learned that Janelle has a sister who is a breast cancer survivor and her father had died from colon cancer about five years prior to her diagnosis. When Janelle's oncological surgeon reviewed her family medical history, she immediately recommended tha t she get the BRCA 1/2 genetic testing. Janelle had just been diagnosed with breast cancer two days before she met with her oncological surgeon, but she was extremely eager to begin treating her cancer. She was diagnosed with aggressive and fast moving can cer that had already spread to her sentinel nodes. Janelle's oncological surgeon explained that her cancer could be treated with a less aggressive surgical option, a lumpectomy, or she could perform a much more aggressive surgery, a
! ! ! 72 bilateral mastectomy J anelle agonized over which surgical choice would be the best option; she decided to get a second opinion from another oncological surgeon: The doctor came into the room and said you don't have to get the genetic test, but you do the BRCA [ 1/2 test], if y ou do it and you test positive then you should definitely get a bilateral mastectomy '. Janelle decided that she definitely wanted to get the BRCA 1/2 genetic test because it could help her to make the best decision for her and for her body : "I knew that if I were [ BRCA ] positive that would seal the deal, I would definitely get a bilateral mastectomy Still, Janelle needed to get the test results as quickly as possible in order to schedule her cancer surgery. Janelle vividly remembered how fast she needed to make a decision regarding her surgery: My BRCA blood draw was on May 9th, so that was within 2 weeks of being diagnosed [with breast cancer]. I got my report on May 23rd and my surgery was scheduled for the first week in June. I had to hound the insura nce company, I really did, I didn't know if they were going to pay for the test. Unfortunately, when Janelle scheduled the BRCA 1/2 genetic test, her insurance informed her that it would not be able to cover the cost of the test. Janelle ended up spending hours on the phone talking with her insurance company, United Health Care (PPO) about cov ering the test. Finally, she asked her oncologist about insurance coverage: I really wanted the answer from the BRCA test but I wasn't having any luck getting my ins urance t o agree to pay for the test. I was having a conversation with my oncologist and he said there was a patent on the gene and I thought that was kind of strange. Then, my oncological surgeon said she would write my insurance a letter explaining why I needed the test; she ordered the BRCA [genetic test] immediately I didn't even have to go to a genetic counselor; my
! ! ! 73 oncological surgeon did the blood draw in her office and was also the person who called me with my results. Janelle received the resul ts from the BRCA 1/2 genetic test two weeks later and even though she had a "negative" test result for the BRCA 1/2 genetic mutations, she still decided to go ahead with the more invasive, bil ateral mastectomy, surgery. Janelle believed that the only way s he would have non recurrence of breast cancer would be to aggressively treat her cancer. Understanding "The Reason" for Cancer Margaret Lock (1998) has argued that genetic testing, including BRCA 1/2 genetic testing, permits us to divine our future by usi ng our genes as omens The result of this divination or "gift of knowing", is that while we can more precisely speculate the likelihood that an individual may or may not be diagnosed with breast cancer at some point in her life, this powerful technology p rovides us with new ambiguities and uncertainties. For individuals who have not yet been diagnosed with cancer, genetic testing could heighten anxiety about what the future may hold in store because a positive result from a BRCA 1/2 genetic test now means the individual is officially at risk' for breast, ovarian or other cancers ( Lock 1998 ) Arguably, for some individuals who have not been diagnosed with breast cancer, BRCA 1/ 2 genetic testing could cause more harm than good if it results complicate and obscure an individual's un derstanding of themselves and their body. Yet, for the six participants of this study who either had a
! ! ! 74 BRCA 1/ 2 genetic test or hoped to get the test, every one of them b elieved that the test could possibly provide them with a definitive for answer for why they had breast cancer When a cancer patient is diagnosed, physicians are taught to treat the disease, or the distinct set of biological and pathological processes of cancer. Yet, cancer patients suffer from illness, or the complete physical and emotio nal distress that is experienced when a person is diagnosed with a disease. Illness is culturally shaped based on factors governing an individual's perception, explanation and valuation of the disease experience and the process that are embedded within fa mily, social and cultural values ( Kleinman, et al. 2006 ) Anthropologists have explained how Western epistemology values conceptual dualism, including mind/body dualism; the result is that the activity of the mind is valued over and against the life of the body ( Kirmayer 1992 ; Scheper Hughes and Lock 1987 ) The result of this conceptual dualism is a radical abstraction of the meaning of the individual and the suffering body is then subordinated to philosophical and political ideals ( Kirmayer 1992 ) Thus, sick ness separates the mind from the body and places the body in the foreground for the individuals who are suffering Illness may also bring powerful cultural stigmas placing an individual in a vulnerable position and provoking them to two fund amental questio ns: Why me? And w hat can be done? ( Kleinman 1988 ) The word "cancer" is a scary word and e vo ke s images of death and dying. Susan Sontag (1978) explains that "cancer" is a damning word becaus e it isn't just a disease. For people with cancer, they become demoralized as the disease jeopardizes every aspect of their life For cancer patients the sign s and symptoms of sickness become an
! ! ! 75 ephemeral and spiritual second reality or the individual's "other" ( Sontag 1978 ) The women interviewed in this stu dy often inadvertently described how they coped with their illness by separating their mind from their body almost as though the cancer was a separate entity that was not a part of them For instance, Arianna, recounted the anger she felt when she looked in the mirror: There were a few months that I couldn't even look in the mirror because I didn't recognize myself. I would get so....I would get angry.I would get violent. Once, I came home from chemo and I saw myself in the entry hall mirror and I picked up a shoe or something, I don't even know what it was, but I threw it at the mirror and it shattered. I hated that other person in the mirrorbut that was probably the lowest point for me. Christy, another participant, also portrays her breast cancer as another entity, but something that is now an inseparable part of her life: Before I had cancer, I pictured the disease as an all consuming monster that ruled over wellness, productivity, work, contentment, joy and basically all of life. Life really does c arry on in between the appointments, chemo, and surgeriesbut cancer is alwa ys there. It's always with you. When I was first diagnosed and I learned I had the "uncomplicated" cancer, one of the nurses explained that cancer would just be like a little inco nvenience in my life. I figured that it would be one year of my life that would be really hard and really difficultshe [the nurse] was right, I was lucky that I didn't have a lot of complications, but that was one year of hell. It's one year of hell that never leaves you. For all of the women I interviewed, separating their mind and soul from the disease of cancer places cancer in the role of the "other" and gives them a way to understand and cope with the "new" reality of living with their illness. All o f the research participants shared their struggle to understand why they were diagnosed with breast
! ! ! 76 cancer and why other women were not diagnosed. Almost every woman shared Susanna's sentiments: I was really really really.really surprised when I was diagn osed with cancer and I raged "against the man" for a long time, if you will, over the 12 things you can do to prevent cancer. You know, have a baby. Yes! Check mark! Do this, okay! Do this, Okay! I didn't smoke, I didn't drink and I wasn't morbidly obese it seemed to be an incredibly unfair diagnosis and it just didn't make any sense to me. It seemed likereally are you kidding? I have breast cancer? While all of the women asked the question "W hy me ? about their diagnosis with breast cancer, other part icipants wanted a more definitive explanation for their cancer diagnosis a nd the BRCA 1/2 genetic test offered them an opportunity to get the answer they deeply needed. The women in this study who either received the BRCA 1/2 genetic test or desired the t est stated their hope that test could finally answer the question of why they had breast cancer Susanna' s experience with BRCA 1/2 genetic testing captures the essence of why the women in this study perceived this genetic test to be the answer to a partic ularly difficult question. Susanna is 64 and was first diagnosed with breast cancer at the age of 40; she had been in remission for almost 20 years when she was diagnosed with breast cancer a second time As mentioned earlier in this chapter Susanna consi dered herself to be healthy and health conscious; she reflected her experience as a younger woman diagnosed with breast cancer: I went to the doctor with my mammogram results and we saw somethingthe doctor told me, no, don't worry. You're too young', but a week later they call and tell y ou that you have breast cancer. Then, I went
! ! ! 77 to a breast cancer support group at the hospital, but I only went once. It seemed like they were much older women and I thought wait a minute, I'm in the wrong group, I don't fit here'. I was pretty sure that they were going to call me and tell me that [my diagnosis] was a mistake Almost twenty years after her first diagnosis, the world of cancer and cancer treatments had changed drastically. When Susanna was first diagnosed with breast cancer, she had never heard about the BRCA 1/2 genes, but on her second time around the "cancer block", Susanna now found herself reading articles about hereditary breast cancers and the new genetic tests that were offered to some breast and o varian cancer patients. Susanna shared her account of what it was like to be diagnosed with breast cancer a second time: The second time I was diagnosed, it was really painful. I couldn't understand it because it didn't make sense to me the first time. a nd that was when I decided to do that BRCA testing because you know, I have a daughter and I was concerned about her and wanted to know if she could also get this disease. Also, I had an aunt with cancer years ago so I realized I had a family connection t o [breast cancer] I thought the test was going to finally explain how and why I could possibly have this disease. When I asked my new oncologist about the test, he said sure, why not get the test?'and I guess, that was that. I got the [ BRCA 1/2 ] test so on after that. Susanna's story illustrates how BRCA 1/2 genetic testing offers breast cancer patients the "gift of knowing ". Interestingly, for the participants in this study, "gift of knowing" provides women with control over their bodies; the women are unconcerned about their "at risk" status because they already have breast cancer and therefore they do not ne ed to negotiate and accept the "at risk" health status ( Kenen 1996 ) Instead, the BRCA 1/2 genetic test is empowering to these breast cancer survivors and the knowledge
! ! ! 78 it provides is intrinsically good because it provides them with the ability to make more informed decisions about their body, their cancer treatments or t o offer the comfort of knowing that their loved ones may be able to know more about their own risk for breast or ovarian cancer. Chapter Summary The three main reasons participants gave for desiring BRCA 1/2 genetic testing were (1) u nderstanding her ris k of future breast or other cancers; (2) m aking appropriate breast cancer treatment decisions; ( 3 ) u nderstanding why she was diagnosed with breast cancer. These three reasons demonstrate that access to genetic testing is complex and contingent upon any num ber of factors including: a woman's knowledge and education about medicine, cancer and genetics, Federal health insurance laws and policies cultural knowledge and beliefs, and the health care provider guiding her through the cancer treatment process. The str uctural vulnerability and political ecology of health frameworks encourage research that reveals how structural forces result in poor health outcomes. In the case of the three women in this study who were unable to obtain BRCA 1/2 genetic tests due to p rivate insurance regulations and policies, arguably these women could be at risk for inappropriate surgical interventions or inadequate access to preventative treatments. The PEH framework suggests that health injustices may be a product of multiple factor s including the environment where a person lives. The women of this study obtained private health insurance through a workplace sponsored insurance program and this finding reiterates that where woman works may b e tied to her health outcomes. In the
! ! ! 79 follow ing chapter, I analyze the results of this study through the lens of the political ecology of health and structural vulnerability frameworks. This analysis reveals how research participants' access to BRCA 1/ 2 genetic testing is the result of HMO and PPO private insurance policies and these policies are a consequence of the history, politics, economy, cultural environment of the United States.
! ! ! 80 CHAPTER VI DISCUSSION Hidden Inequities: PPO and HMO Insurance Differences in Coverage I approached the analy sis of my research results from the perspective of political ecology of health and structural vulnerability frameworks. These frameworks engage the researcher in considering her subject from multiple perspectives of social, cultural, political, economic an d ecological factors in order to identify the key processes at work within the system. I found these frameworks to be useful in the identification of private insurance as a major factor that may provide or deny a breast cancer patient access to BRCA 1/2 ge netic testing. The following discussion outlines some of the ways that politics, economy, cultural and environmental factors influence HMO and PPO insurance policies on coverage for BRCA 1/ 2 genetic testing. In th e U.S. a person's access to private med ical care is primarily based on that person's ability to obtain insurance through an employer sponsored insurance program or by paying for insurance out of pocket Insurance companies "gatekeepers" of medical care because they decide exactly what medical c are they will cover and how much medical care they will cover for any given person The result of the U.S. insurance system is unequal access to BRCA 1/2 genetic testing because testing is granted to individuals based on medical family history, insuran ce c overage, and the ability to pay.
! ! ! 81 This difference in access means that BRCA 1/2 genetic tests occupy a pri vileged diagnostic status. The question of who will receive which technologies is critical because access to genetic testing it has a direct impact on the subsequent forms of prevention, monitoring and treatment of disease ( A arden, et al. 2010 ) The breast cancer survivors who participated in this research study expressed interest in BRCA 1/2 genetic testing because they believed it would provide them with valuab le information that could ensure better health care outcomes I concluded from the results of my study that unequal access to BRCA 1/ 2 genetic testing for the women in this study was contingent on the type of private insurance. All eight of the participants in this study had a form of private insurance, either HMO or PPO. This unexpected outcome became an opportunity to explore the issue of private insurances and implications on access to genetic testing. Recent studies have found that individuals who are insured tend to have better health outcomes than the uninsur ed ( Levy and Meltzer 2008 ) Studies seeking to understand health outcomes of the uninsured are challenging because it is difficult to distinguish between differences in health outcomes that are a result of only inadequate he alth insurance or differences due to other, unobservable factors. Before the Affordable Care Act, people with pre existing conditions may not have been eligible for insurance or have been unable to pay exorbitant insurance premiums upwards of $1000 per mo nth ( Romley, et al. 2012 ) issued to pre diagnosed individuals.
! ! ! 82 The majority of anthropological and public health studies on health insurance have primarily targeted three general categories of insurance coverage: privately insured ( combining HMO and PPO), publically insured (Me dicaid/Medicare) and uninsured ( Hadley 2003 ; Levy and Meltzer 2008 ; Sorlie, et al. 1994 ) Private insurance can be broken down into tw o more general categories, HMO and PPO, and may be split into hundred, if not thousands, of different types of insurance plans, policies and coverage options for patients. Public health studies evaluating differences in insurance and health outcomes ar e l arge, quantitatively driven studies and correspondingly it makes sense to keep the three, general categories of "public", "private", "uninsured" individuals in order to make comparisons ( Le vy and Meltzer 2008 ; Sorlie, et al. 1994 ) The value of this ethnographic study is that it offers explicit and in depth comparisons of the differences between health insurance policies and plans. This study reveals how women with breast cancer are able to access BRCA 1/2 genetic testing depending on the type of private insurance; whether they had a PPO or HMO insurance covering them throughout their battle with cancer. Three of the women in this stud y (37.5%) were covered by Kaiser Permanente, a HMO insurance plan. This reflects the fact that in the state of Colorado, Kaiser Permanente covers 63% of all individuals with HMO insurance plans ( Kaiser Family Foundation 2011 ) The remaining five participants of the study h ad PPO insurance coverage from United Healthcare, Blue Cross/Blue Shield or Cigna. I t is not within the scope of this study to evaluate diffe rences in coverage for individuals beyond coverage
! ! ! 83 for BRCA 1/2 genetic testing; presumably there are many differences even between different HMO or PPO companies and plans. Results of this study suggest clear differences between HMO insurance and PPO insu rance plans in the ability of the participants of this study to access BRCA 1/ 2 genetic testing. Six of the women in this study expressed interest in a BRCA 1/2 genetic test and of these six, only three of the women were able to get the actual testing. T hese three women had a PPO insurance plan either Blue Cross/Blue Shield or Cigna. Neither of the women covered by United Health Care expressed a desire to get the testing making it difficult to determine if they would have been able to access the test. A ll of the women in this study with HMO insurance stated that they desired BRCA 1/2 genetic testing. Lorena, Dora and Arianna said they had asked their oncologist at some point while they were being treated for breast cancer if they could be tested. Each of the women mentioned that their provider explained to them that genetic testing was not an option because Kaiser was unable to cover this type of genetic testing. A common theme of each of the women covered by HMO insurance was that how their physician d iscouraged the BRCA 1/2 genetic testing. Recall earlier accounts from both Lorena and Dora, asking their oncologists for the g enetic test. Lorena said th at she felt her physician "down played" the importance of the BRCA 1/2 genetic test and Dora stated her doctor shut her down and did not even go on to explain why the genetic test was not an option for her. When the reactions of Lorena and Dora's physicians asked about BRCA 1/2 genetic testing are compared with the reactions of physicians of the
! ! ! 84 women in thi s st udy who had a PPO insurance, there are clear differences. S usanna's physician responded, "S ure, why not?", when she asked if she could get the genetic test. Janelle and Christy's physicians both suggested the BRCA 1/2 test as a way to help direct thei r cancer treatments. It is improbable that Lorena and Dora's oncologists are simply "bad" physicians unwilling to listen to their patients Lorena, in fact, expressed her admiration for her doctor. Consider the basic principles guiding the policies of PPO and HMO insurance companies: PPO s have traditionally operated as "fee for service" entities, encouraging physicians to offer more services t o increase their annual incomes. Meanwhile, HMO control costs by limiting the number of referrals and services t o patients unless absolutely necessary. This basic difference exp lains why the study participants with HMO insurance were unable to access BRCA 1/2 genetic testing and why the women PPO insurance were able to obtain the testing. T his distinction implies th at the HMO denies patients equitable access to BRCA 1/2 genetic testing when compared to patients with PPO insurance. This conclusion is comparable to other studies that have found that patients with HMO insurance may not be receiving comparable care to patients with PPO insurances ( Hansen Turton, et al. 2013 ; Jiang, et al. 2013 ; Miller and Luft 2002 ; Shin and Moon 2007 ) One study examining only HMO health care costs found that insurance markets with high HMO penetration had lower average costs than hosp i tals in markets that had more competition from PPO insurance but at the same time these markets higher mortality rates at the hospitals have higher HMO penetration ( Jiang, et al. 2013 ) A
! ! ! 85 review of 79 studies comparing the quality of care between HMO insurances and n on HMOs found that HMOs use fewer resources including h ospitals and other treatments. The individuals covered by HMO insurance often reported dissatisfaction with their access to care and low overall satisfaction with their insurance when compared to indi viduals with other forms of private insurance ( Miller and Luft 2002 ) Apart from differences in quality of care or satisfaction between patients with HMO insurance and PPO insurance, a limited number o f research studies have examined the relationship of ethnicity and socio economic status and private insurance coverage. O verall enrollment in HMO insurance plans has been de creasing in the past decade. Studies have found that utilization of HMO insurance continues to rise among privately insured African A mericans and Hispanics in the U.S. ( DeLaet, et al. 2002 ) Hunt and colleagues in 2005 examined ethnic disparities and perceptions of health care in order to determine differences among private insurance health plans. The researchers found that ethnic minorities, African American s and Latinos, were more likely to be enrolled in an HMO insurance than white Americans ( Hunt, et al. 2005 ) The authors found that Africans Americans and Latinos who enrolled in HMO plans had a lower level of trust and satisfaction with their providers when compared to African Americans and Latinos covered by PPO insurance plans ( Hunt, et al. 2005 ) Finally, research evaluating only HMO insurance plans, compared colorectal cancer screenings among different ethnic groups only and determined that the HMO organizat ional structure obstructed access to the colorectal screenings more often for high risk non white individuals, but not for high
! ! ! 86 risk white individuals ( Ponce, et al. 2005 ) The authors concluded that the HMO structure could place individuals from ethnic minority backgrounds in danger of poor health outcomes ( Ponce, et al. 2005 ) The participant sample of this study makes it diffi cult to make definitive correlations between ethnic background and type of private insurance, or regarding ethnic disparities within HMO or PPO insurance organizations. My results are consistent the conclusions found in earlier studies on HMO and PPO insur ance organizations. This study and studies such as t he work by Ponce et al. (2005) provide evidence of how neoliberal insurance policies result in ethnic and class based discrimination in access to health. The three research participants with HMO insurance all self identified as an ethnic mi nority of either a Hispanic or Mixed Ethnicities The women were denied access to the BRCA 1/ 2 genetic testing. Structural vulnerability contends that ethnic and class based discrimination is a product of structural fo rces that may result in poor health outcomes ( Quesada, et al. 2011 ) HMOs and HMO insurance policies that limit access to BRCA 1/2 genetic testing perpetuate health care inequalities and discrimination in the U.S Physician Intervention : Bargaining With Insurance Companies The political ecology of health (PEH) a nd structural vulnerability approach to the analysis of differences between HMO and PPO insurance policies demonstrates how political, economic, cultural and social factors overlap and can result in differences in patient health outcomes Variances between the HMO and PPO insurance policies are
! ! ! 87 responsible for a breast cancer patient's access to coverage for BRCA 1/ 2 genetic testing, I also found that several participa nts of this study were able to assert more agency within the structure of their insurance plans through negotiations with their insurance policies for coverage of the BRCA 1/ 2 genetic test. The women with PPO insurance coverage were better able to negotiate with their insurance in order to receive coverage of the BRCA 1/ 2 genetic test. Successf ul negotiation for coverage of BRCA 1/ 2 genetic testing is contingent upon a woman's socio economic status, education level, cultural and ethnic background. The complexities within the private insurance system makes it challenging to determine if a success ful negotiation for insurance coverage of BRCA 1/2 testing is only a product of the breast ca ncer patient's insurance policy or as previously discussed, if the type of private insurance policy is dependent upon the woman's employer and her socio economic s tatus. I argue that a breast cancer patient's bargaining power within negotiations for insurance coverage of the BRCA 1/2 genetic test increases if she is covered by private PPO health insuranc e and thus, bargaining power remains beholden to the structures of private insurance companies. The fee for service payment structures of early American private insurance companies opened the door for HMOs to assert considerable power in the ability to set their own prices for pa tient treatments and services. As HMOs became more prevalent throughout the 1990s, hospitals and health care providers became increasingly competitive with their prices in order to maintain a competitive place in a changing insurance market ( Lewis and Pflum 2013 ) In chapter III I reviewed previous re search on
! ! ! 88 bargaining theory to understand what factors determine the prices of health care through negotiations between the hospital and insurers ( Brooks, et al. 199 7 ; Lewis and Pflum 2013 ; Robinson 2004 ) Research journals targeted at medical providers have also published news and research on the topic of provid er negotiations with insurance companies in order to advocate on the behalf of patients ( Doorne 2006 ; Forret and McGuire 1996 ) Apart from the Gans and Leigh (2011) study described in chapter III few anthropological stu dies have examined the patient experience with in insurance negotiations. The role of bargaining between patients and insurance companies for health care coverage is clearly under resear ched and deserves more attention by medical anthropologists A surv ey of the literature confirms that bargaining is a central component of the structure of the medical system and is a significant feature of the patient and provider relationship. For over four decades, anthropologists have been studying patient provider re lationship and at the forefront of this dialogue has been the i dea of structure' and agency'; how does race, ethnicity and language impact patient health outcomes ( Ferguson and Candib 2003 ; Fisher and Groce 1985 ; Hahn and Kleinman 1983 ; Katon and Kleinman 1981 ; Pappas 1990 ) ? Medical anthropologists are interested in locating power within the deci sion making process for patients. Power is an aspect of the patient provider relationship and is exerted through the dep loyment of resources by either the physician or the patient ( Pappas 1990 ) Patients apply their resources to exert some degree of control over their condition, but they are dependent on the skill, integrity and
! ! ! 89 interest of their provider. Providers are dependent on their patient for cooperation, income and reputation. A summary of the patient provider relationship suggests that b argaining power is a key element of the negotiation between these two roles. This type of power dynamic implies a fine line between a physician as a patient's advocate versus a patient's gatekeeper to important medical treatments. Janelle wanted to get t he genetic test in order to help her make a decision about a more invasive breast cancer surgery Janelle's PPO insurance denied her coverage for the genetic test, but this coverage decision was successfully appealed when Janelle's oncologist stepped in an d wrote a letter on her behalf explaining why the test was necessary. Once again, Janelle said: My oncological surgeon said she would write my insurance a letter explaining why I needed the test; she ordered the BRCA [genetic test] immediately. I didn't e ven have to go to a genetic counselor; my oncological surgeon did the blood draw in her office and was also the person who called me with my results. Lorena's experience parallels Janelle's. Lorena asked her HMO oncologist about the BRCA 1/2 genetic test : I loved [my oncologist]I don't know if she down played [the BRCA 1/2 test] because Kaiser wouldn't pay for it or then she talked about the risks being so low that she wanted me to just forget about it.so I did hit some brick walls with the genetic tes t. The difference is striking between Janelle and Lorena's experiences asking their physician to help access the BRCA 1/2 genetic test. When Janelle asked her physician what she could do to get her insurance to cover the test, the oncologist immediately acted
! ! ! 90 on her behalf. Lorena's oncologist appears to dodge the question by downplaying the value of the genetic test. Lorena expressed a genuine respect for her oncologist and at one point in our interview declared: "[my oncolog ist] cured me! She really di d!" However, when I asked Janelle what was the one thing that she would have changed about her battle with breast cancer she stated: I've said it several times to my doctors, but I would change the physicians and the collaboration between the physicians One doctor would say one thing and then another would come in and say another thing I 'm the one fighting the fight, but because they didn't have a conversation, they didn't come up with a comprehensive plan. It's unlikely that Janelle's physician was mo re likely to intervene in the insurance negotiation for BRCA 1/2 genetic testing coverage because Janelle had a better relationship with her physician than Lorena did with hers. Instead, Janelle's physician likely had greater negotiating power with the ins urer The PPO insurance fee for service system allows physicians to make more money if they supply more services. Physicians referring patients for BRCA 1/ 2 genetic testing may not make money off the actual test, but patients referred for testing will have follow up physician office visits when the physician will be reimbursed ( Hagland 2012 ) Janelle's oncologist is less likely to be tied to insurance restrictions on the types and amount of medical treatments she can prescribe for her patients. As a physician working within a PPO insurance system she is more empowered to negotiate on behalf of her patients for medical services she believes are essential.
! ! ! 91 According to the study by Lewis and Pflum (2013), a negotiator's bargaining power will change depending on her belief in the probability that t he other negotiator will stop negotiating. It is more likely that PPO provider s will negotiate on the behalf of women who want BRCA 1/2 genetic testing based on previously positive outcomes from similar negotiations. The result is a better bargaining posit ion and bargaining power for both the PPO provider and their breast cancer patie nts. HMO health providers are more likely to have had negative outcomes from negotiations for insurance coverage for mor e expensive patient treatments. HMO providers will be le ss likely to assist their patients in negotiating insurance coverage d enials ( Hall, et al. 1995 ; Rizzo 2005 ) According to a review of insurance dispute cases in the U.S., HMO insurance companies are less likel y to produce coverage disputes even though they are more likely to deny patients treatments ( Hall, et al. 1995 ) The authors justify this anomaly by the fact HMO physicians are usually the individuals making the coverage decisions for the patients they are treating. The patients lack of knowledge of potentially beneficial care could easily account for the lack of cov erage disputes in HMO insurance settings ( Hall, et al. 1995 ) Insurance financial incentives will be discussed mo re in depth in the next section of this chapter. In addition to the type of private insurance a woman had, the level of education also empowered several of the women in negotiating with their insurance. Hall et al. (1995) reveal ed that a patient's lack o f knowledge of the benefits of health treatments and tests likely accounts for the fewer HMO insurance coverage disputes. This finding
! ! ! 92 suggests that a patient covered by HMO insurance have less bargaining power in insurance negotiations because the patient is dependent upon her physician to provide her with guidance on appropriate treatment decisions. The results of this study echo the finding in the study by Hall et al. (199 5) by reiterating how HMO physicians may act more as gate keepers restricting acces s to valuable medical tests, including the BRCA 1/2 genetic test. The ethnographies of inclusion in this study suggest that education could have helped to empower some of the participants with their negotiations with their health insurance. Patients today have access to an unbelievable amount of information primarily through the Internet such as websites of the Mayo Clinic website and the National Institute s of Health. Quality information about health is largely viewed as a critical part of patient empowe rment ( Henwood, et al. 2003 ) Regard less of their level of education, all of the women I spoke with said they conducted online research, either on either about breast cancer in general or about more specific questions they had about treatment plans, medications or new breast cancer research. Janelle, Susanna and other participants spent hours re searching breast cancer topics. When I interviewed Janelle, she brought out huge file folders filled with her lab oratory diagnostic resul ts, positron emission tomography scan images, notes from doctor' s appointments and online printed materials on r elevant breast cancer topics. Susanna stated: "I felt like I had to become an expert on cance r and I stayed up late almost every night staring at my computer and trying to learn everything that I couldeventu ally, I had to force myself to stop!" Susanna has a Masters degree in
! ! ! 93 chemical engineering and she told me that her education made it easier for her to read complicated research papers on issues of breast cancer. Susanna and Janelle explained that they of ten relied on information gleaned from their own research on breast cancer related topics in order to make important decisions on their breast cancer treatment. Once again, recall that Susanna came to her physician with knowledge about the BRCA 1/2 genetic test and was able to make an important case on why the test could be valuable to her: That was when I decided to do that BRCA testing because you know, I have a daughter and I was concerned about her and wanted to know if she could also get this disease. Also, I had an aunt with cancer years ago, so I realized I had a family connection to [breast cancer ] Susanna and Janelle obtained insurance coverage for the BRCA 1/2 genetic testing. Therefore, a breast cancer patient's education may be empowering with in negotiations with either their physician or their insurance for BRCA 1/2 genetic testing. The role of education in negotiations for access to genetic testing suggests that perhaps a woman's employment and workplace may also be a factor in a woman's bar gaining power? The role of employment, insurance access and access to genetic testing technology is under researched and a potential topic for further study and analysis. Insurance Policies: The Role of Physician Financial Incentives The previous chapter section discusses how private insurance coverage for the BRCA 1/2 genetic testing is partly contingent on the breast cancer patient's physician(s) and the likelihood that the physician will engage in negotiations with insurance to cover
! ! ! 94 the test Yet, even these negotiations are tied to the larger structure s of private insurance policies Earlier financial incentives used by HMO insurance companies were mentioned as methods to promote cost savings within HMO insurance systems Financial incentives partiall y explain a breast cancer patient's limited bargaining power for insurance coverage of the BRCA 1/2 genetic test within an HMO insurance company Financial incentives are an important factor in how physicians choose which medical tests and treatments to or der for their patients The bottom line is that the BRCA 1/2 genetic test is a $3500 test and in a country where medical costs have skyrocketed in recent years health insurance companies are struggling to determine how to regain control of medical expense s. This struggle for control has provoked the policy makers at private insurance companies to make decisions about how much or how little health care may be provided to certain patients These policy decisions and the implementation of the policies mean th at breast cancer patients who desire the BRCA 1/ 2 tests may not have access to these potentially valuable diagnostics. Health care r eform has become a hot topic in recent years because as a percentage of the gross domestic product (GDP), medical expenditu res have increased from 5.1% in 1960 to 17.9% in 2011 ( Berwick and Hackbarth 2012 ) Health care cost savings initiatives have not only becom e a publ ic policy issue, but a key issue of health economics. Insurance companies strive to develop policies designed to slow the rate of medical costs and ensure a steady flow of profits Under the fee for service reimbursement plan that is used by PPO insurance companies, physician compensation is
! ! ! 95 a function of the supply of services and procedures ( Armour, et al. 2001 ) As long as the demand for health care services remains steady, the financial incentive for physicians in a PPO system is to maintain a price for service that is greater than the average cost of medical care In 2013, the demand for health care continues to increase, especially as more significant portions of the ACA are implemented ( Kirch, et al. 2012 ) Consequently, the result of this fee for service reimbursement used by PPO insurance companies is the increased likelihood of a larger volume of patient services provided by physicians (Table 6.1). Table 6.1 Likelihood of Provider Referre d Services in HMO and PPO Insurance Companies Type of Physician Base Compensation (Physician Financial Incentives) Out of Pocket Patient Cost HMO (Salary Physicians) PPO (Fee For Service) Low Moderate Likelihood High Likelihood High Low Likelihood Mo derate Likelihood Bonus Payments (Explicit Financial Incentives) Low Low Likelihood High Likelihood High Very Low Likelihood No Research Reducing costs and unnecessary treatme nts is a primary goal for HMOs because they claim that this strategy will deliver the most effective patient centered care and efficient population level care ( Armour, et al. 2001 ) Previous research suggests that the use of financial incentives by health maintenance organizations changes a physician's behavior toward individual patients ( Armour, et al. 2001 ; Hillman, et al. 1989 ) As the
! ! ! 96 primary decision makers of patient referrals for treatment and care, HMOs tend to focus on influencing physician beh avior to promote cost effecti ve decision making. Therefore, physician financial incentives have become a popular way to influence physician behavior ( Dudley, et al. 1998 ) Implicit fi nancial incen tives such as salary increases, bonuses and fees for service have been used to encourage physicians to contain costs. Under HMO insurance companies, physician compensation is based on a capitated fee meaning that physicians have a financial incentive to increase their number of patients, pending that their fee is greater than the average cost of actually caring for that particular number of patients ( Armour, et al. 2001 ) The result of this kind of financial arrangement is the physician reduction of the average cost of providing patient care by reducing the total amount of time that is spent with each patient. T he objective of HMOs is to reduce the cost of care and correspondingly, physicians are incentivized to reduce the number of patient referrals to specialists an d the number of referrals for additional testing and services that are not needed immediately ( Berwick and Hackbarth 2012 ) Considering that the cost of the BRCA 1/2 genetic test is expensive for a diagnostic test, one may pres ume that an HMO insurance company would definitely incentivize physicians to limit patient referrals for this type of testing. In fact, based on the results of this study they hypothesis that HMO physicians are incentivized to limit patient referrals for BRCA 1/ 2 genetic testing is supported. All three of the women in this study who had Kaiser Permanente, HMO, insurance desired the BRCA 1/2 genetic testing but were unable to ge t Kaiser to cover the test. Earlier, I shared
! ! ! 97 Lorena's experience attempting to access genetic testing throug h her Kaiser insurance provider. Lorena's earlier comment about Kaiser "not being as good a health plan that they boast to be" is especially intere sting in light of research on physician incentives within HMO insurance companies. Given that Kaiser requires patients to have a 10% threshold of documented family members with breast or ovarian cancer before they will cover BRCA 1/2 genetic testing. None of the participants in this study who had Kaiser insurance were able to get the genetic testing. Considering that breast cancer patients may benefit from BRCA 1/2 genetic testing in order to develop an effective cancer treatment plan, one might question Kaiser's apparent policy restricting patient access to this diagnostic technology. P revious studies evaluating HMO physician incentive plans have concluded that incentives may not be ethical or morally acceptable in the practice of medicine ( Armour, et al. 2001 ; Stoddard, et al. 2003 ) The problem with HMO incentive arrangements is not with the physicians providing treatments. The problem is with the policy If we return to Lorena's statement about her provider, Lorena's problem is with Kaiser and not with her oncologist Lorena senses the conflict of interest that her oncologist experiences based on the financial incentive within Kaiser. Studies have found that physicians working within HMO insurance plans, including Kaiser, experience greater difficulty in obtaining medically necessary specialty service for their patients and perceive more of a conflict of interest than providers within PPO insurance networ ks ( Hellinger 1996 ; Stoddard, et al. 2003 ) The U.S. health care system faces challenges in efforts to reduce the dramatic
! ! ! 98 increases to health care. The system and its supporters have been unable to answer the question: can physician incentives be developed that are both ethical and effective ?
! ! ! 99 CHAPTER VII CONCLUSIONS Lorena's Story: Revised Let me introduce you once again to Lorena the 60 year old breast cancer survivor who part icipated in m y study. "I'm going to be 61 at my next birthday and I'm just happy to be living this long. But if the y told me right now that I could have the [ BRCA 1/2 ] genetic testing, I would have it". In June 2013 the Supreme Court ruled that genetic patents are illegal and Lor ena may be able to finally get tested for the BRCA 1/2 genes. Myriad Genetics may still ow n the patent for the cDNA for the BRCA 1/2 test that it currently charges over $3500 for; however, Myriad may soon have stiff competition for the BRCA 1/2 genetic testing market. A number of biotechnology companies including, GeneDx, Ambry Genetics, Montef iore Medic al Center and Quest Diagnostics recently claimed that they are developing their own versions of the BRCA 1/2 genetic test and these will be on the market in the near future ( Pollack 2013 ) This competition could force Myriad to lower the cost of their genetic t est. What do these changes mean for breast cancer patients and survivors like Lorena who have been denied coverage for BRCA 1/2 genetic testing by their insurance companies? It will likely mean that the cost of the BRCA 1/2 genetic test will become more a ffordable, leading to greater access to this diagnostic test, either through increased
! ! ! 100 insurance coverage for the test or due to a lower price tag making the test more affordable for more individuals. I n June 2013 I called Lorena to discuss the results of the Supreme Court's ruling on genetic patents and explained what this could mean in terms of her access to the BRCA 1/2 genetic tests. According to Lorena, I can't believe it! This sounds like it could be really good news. I just can't understand why it to ok this long for them to make a decisionIt feels like it's been a decade since I first asked my doctor about that test, but now I wonder if this will act ually change anything at Kaiser ? I also wonder if it'll be easier for my kids and my grandkids to get the test if they want it? Lorena is skeptical that the Supreme Court ruling will result in immediate changes in access to the BRCA 1/2 genetic testing. Upon news of the decision in mid June of 2013, Myriad Genetics announced plans to phase out the curren t BRCA 1/2 g enetic tests by the end of 2015. The company will replace the test with a test that will analyze 25 genes that are known to contribute to an individual's risk for breast cancer ( Pollack 2013 ) Myriad has said that the new test will likely cost the same as the current $3500 BRCA 1/2 genetic test; provoking me to echo Lorena's concerns will there be changes in the policies of insurance companies like Kaiser regarding coverage for BRCA 1/2 genetic testing? Policy Implications: Beyond Federal Laws on Genetic Pate nts Personalize d medicine' like the BRCA 1/2 genetic test may promise to increase the quality of clinical care and potentially decrease health care costs because diseases are discovered earlier and are treated more effectively ( Davis, et al. 2009 ) Still, the major barrier in access to this testing appears to be related to the economics of health care and
! ! ! 101 health insurance. When I first began the analysis of my results, the U.S. Supreme Court had just begun hearing oral arguments in the case agains t genetic patents. Initially, I concluded that a reversal to f edera l laws allowing the patenting of genes could result in a decreased price for the BRCA 1/2 genetic tests and therefore, increased insurance coverage for the test and greater access to these tests for the people who want them. Therefore, I consider the June 2013 Supreme Court ruling making genetic patenting illegal to be a small victory in the effort to make access to BRCA 1/2 testing equitable However, w e must be cautious before assuming that this change in Federal law will mean that all of the women in thi s study who conveyed interest in the genetic testing will now be able to obtain a BRCA 1/2 test. An overview of the literature reveals that people with private insurance are no longer as satisfied with their HMO insurance as the people covered by PPO insu rance. This dissatisfaction is possibly why HMO enrollment has declined since 2000 ( Jiang, et al. 2013 ) and why surveys have shown that consumers have generally come to prefer PPO insurance companies over HMO insurers ( Lewis and Pflum 2013 ) The U.S. government spends 17.1% of our GDP on health care. Reducing health care costs is a worthy goal, but it does not mean that government and insurance policy makers should develop policies that deny access to diagnostic technologies such as BRCA 1/2 genetic testing. This study indicate s that BRCA 1/2 testing can provide a breast cancer patient with the knowledge necessary to make more informed treatment decis ions. BRCA 1/ 2 genetic testing may actually reduce overall costs of health care.
! ! ! 102 The political ecology of health (PEH) and struc tural vuln erability frameworks encouraged the evaluation of access to BRCA 1/ 2 genetic testing f rom multiple perspectives. The application of these frameworks revealed how private insurance policies are a product of the political economy and culture of th e U.S In order for more breast cancer patients to gain access to these new genetic testing technologies, many changes are needed, including the recent Supreme Court decision making genetic patents illegal. I suggest changes to private insurance policies t hat may offer increased access to BRCA 1/ 2 genetic testing for breast cancer patients including fewer restrictions on family medical histories, including a reduced threshold of required family members affected with breast or ovarian cancer as a requireme nt for insurance coverage of these tests I have shared my digital story, Kleenex, with oncologists, genetic counselors and health care providers at Kaiser Permanente. In order to continue my goal of promoting more equal access to BRCA 1/ 2 genetic testing I will continue sharing lessons learned in this study with other policy makers, including the executive management at Kaiser. Study Limitations The size of this research study is a limitation. As a Master's thesis, eight in depth and ethnographic inte rviews provided me with a substantial amount of research material from which I was able to develop a comprehensive analysis and draw conclusions To more effectively compare the differences between an HMO and PPO insurance, it wo uld be helpful to conduct a study with at least eight participants from either category of insurance.
! ! ! 103 This study examined the issue of access to BRCA 1/2 genetic testing in Colorado Health insurance differs within each state and differences amongst private insurances options stat e by state will increase now that the ACA/ Federally mandated insurance exchanges are beginning to be implemented These new insurance marketplaces will consist entirely of private health insurance options and are meant to be an affordable option for indivi duals and/or groups that do not have insurance through the public s ystem or through an employer. Hence, the insurance policies providing or limiting access to BRCA 1/2 genetic testing in Colorado may not be relevant for private insurance providers elsewhe re. The Federal Supreme Court ruling on genetic testing occurred in the middle of the analysis of the study. The ruling was both a welcome surprise and a victory for the women of this study. It was challenging for me to develop a comprehensive perspectiv e on the effects of the recent Supreme Court decision on access to the BRCA 1/2 genetic testing. Changes to laws and policies will take several years before their effects are recognized and I believe this will be especially true of the law making genetic p atenting illegal. For instance, it is unclear how the continued patenting of cDNA may impact the genetic testing market, including genet ic testing for breast cancers. Investors and shareholders are optimistic about the role of Myriad in genetic testing. Fo llowing the Supreme Court's ruling Myriad Genetic's stock price increased ten percent ( Pollack 2013 ) The BRCA 1/ 2 test is a substantial portion of Myriad Genetics' annual revenue; i n 2012 the BRCA 1/ 2 genetic test represented 81.7% of Myriad Genetics' total revenue
! ! ! 104 ( Henderson and Meldrum 2013 ) It will likely be several yea rs before breast cancer patients have more genetic testing options, but unless Myriad finds a way to develop more diagnostic tests like the BRCA 1/ 2 genetic test, it's doubtful that the company can remain competitive in the future genetic testing market. Finally, this study did not control for the length of time that had passed since the participant was diagnosed with breast cancer. Advances in the treatment of breast cancer, including more personalized medicine' approaches that use BRCA 1/2 genetic tes ting, are more common now than they were for some of the women that were diagnosed with breast cancer ten to fifteen years ago. It would be interesting to see how many women who have been diagnosed with breast cancer within the past five years may have ha d a physician recommend the BRCA 1/2 genetic testing as a way to determine cancer treatment. It is doubtful that there would have been differences in access to genetic testing between the women covered by PPO versus HMO insurance considering fundamental di fferences in the HMO and PPO policies of coverage for BRCA 1/2 genetic testing. Significance of Research I applied the political ecology of hea lth (PEH) framework to explore how multiple perspectives and factors overlap and result in poor health outcomes for individuals or groups. Of the millions of women currently battling breast cancer, in 2012 there were 130,000 BRCA 1/ 2 genetic tests administered to individuals currently living with and without breast cancer ( Henderson and Meldrum 2013 ) Genetic testing is not ye t a widely
! ! ! 105 available technology and the prac tices of genetic testing have no clear boundary. The women interviewed in this project show how politics, economy, culture, environment, technology and health care are all mutually dependent within the U.S. system of health care The relationship of these factors with genetic testing will continue to have dialectical interactions. This research on the use of genetics in health care indicates that genetic technology provides an increased capacity to predict future disease and likewise, these technologies ar e incorporated in to health care through the ongoing processes of mutual adaptation between technology and cultural/environmental context ( Aarden, et al. 2010 ) The result of the PEH approach to my research enabled me to identify and a nalyze how private insurance companies exist at the crossroads of politics, economy, culture and health and consequently impact access to BRCA 1/2 genetic testing. This research study is among the first anthropological qualitative studies evaluating private health insurance and likely one of the only studies examining the impact of insurance on access to BRCA 1/2 genetic testing. Few stu dies have been conducted comparing differences in access to health care between HMO and PPO private health insurances. While the small size of this study makes it challenging to make generalized conclusions about how private insurance may impact access to BRCA 1/2 genetic testing, th is study is invaluable its portrayal of breast cancer patients' experiences with insurance companies while they are being treated for cancer. Most of the anthropological and medical l iterature on BRCA 1/2 genetic testing has focused on the value of this test in the prevention of breast and ovarian cancer or on
! ! ! 106 how genetic tests may impact an individual's perception o f risk. Instead, I explored the experiences of women who have already survived breast cancer to understand their experiences with BRCA 1/2 genetic testing during and after their battle with cancer. By sharing perspective s of women already diagnosed with breast cancer, I found that the participants of this study were not nec essarily as concerned about th eir own risk for future cancer. The women who desired BRCA 1/2 genetic testing were worried about the risk of cancer for their family members. They justified this concern based on their own suffering and hoped the BRCA 1/ 2 ge netic test could save loved ones from undergoing the same experiences. Unlike anthropologists such as Margaret Lock who have argued that this "gift of knowing" may bestow new uncertainties on the individual, the women in this study appeared certain that this testing would add value to their own lives and the lives of their family members. The two participants Christy and Ellen, who did not desire BRCA 1/2 genetic testing were also unconcerned that the genetic test may cause more harm than good. They exp lained that they did not desire the testing; they felt certain that genetic testing was irrelev ant because they believed the environment had instigated their breast cancer Christy stated: There are so many toxins in our environment and I really think tha t's what caused my cancerAfter I was diagnosed, I started realizing that I could use vinegar and water to clean my floors, I don't cook out of nonstick, I minimize use of the microwave but it's just nicer to be a little simpler sometimes. At the time I kn ew I needed to make some changes, but also I wanted to make sure that I never went through [cancer] again.
! ! ! 107 The findings of my study imply that as genetic testing becomes increasingly common perhaps previous questions regarding the value of genetic testin g are no longer as relevant? This research study is consistent with recent publications in the field of oncology on the usefulness of BRCA 1/2 genetic testing in guiding cancer treatment decisions for breast cancer patients. Most of these studies have been published within the past two years and have been aimed at oncologists treating cancer patients. My study is valuable for audience s including oncologists, breast cancer patients and others who desire new knowledge on how this new technology benefited wome n who participated in this study and how genetic testing can serve future patients who will face their own battles with breast cancer. Future Directions The results of this research study identify specific reasons why breast cancer patients are interest ed in BRCA 1/2 genetic testing, but also how private insurance policies may or may not permit a breast cancer patient to access this testing. More research is needed to better understand the role of different private insurance policies, especially with the continued implementation of the Affordable Care Act (ACA). F uture studies are required that examine specific differences in the policies in HMO and PPO insurances that grant coverage for the BRCA 1/2 testing. These policies could be compared to the same insurance company's policies for other diagnostic technologies to better understand if BRCA 1/2 genetic testing is an anomaly within the insurance system.
! ! ! 108 It will be interesting to see how this issue evolves now that genetic patents are illegal. For insta nce, Myriad faces more competition for genetic testing for the BRCA 1/ 2 genes. Will increased competition this result in c h eaper prices for genetic tests and correspondingly, increased private in surance coverage of these tests? As geneticists and molecula r biologists discover the connections between genes and hereditary diseases, this knowledge may change how private insurances view genetic testing technology in general It is possible that genetic testing technology may become a part of standard diagnosti c tests, similar to a cholesterol or complete blood count test. This may result in increased private insura nce coverage of genetic testing Scholars should continue to evaluate if genetic testing technology is equally available to the individuals who desir e and/or require t esting for appropriate health care treatments. My work also implies a connection between workplace and employer with access to private insurance and the resulting health outcomes. Future research is required to better understand these connections and to evaluate how workplace could be tied to access to BRCA 1/ 2 genetic testing. A goal of this study was to utilize the PEH framework to examine the role of work environment within the system of access to the BRCA 1/ 2 genetic test I was u nable to fully operationalize this framework in order to analyze how workplace, education and income level are tied to access of the BRCA 1/ 2 genetic test; therefore, this is an additional area for future examination. Finally, this study evaluated the ro le of the physician within the private insurance system and in breast cancer patient negotiations for insurance coverage of the BRCA 1/ 2
! ! ! 109 genetic test. I did not have the opportunity to interview oncologists, oncological surgeons or primary care providers for breast cancer patients to hear more about their perspective on how they refer breast cancer patients for BRCA 1/ 2 genetic testing. Future research on the topic of access to genetic testing could include ethnographies of physicians and their role in g ene tic testing access for patients as a way to substantiate the conclusions drawn from this research study.
! ! ! 110 APPENDIX A: DIGITAL STORY SCRIPT AND COMPANION VIEWING GUIDE Title: Kleenex Producer: Emily Hammad Intended Audience: Health Insurance Policy M akers (Including the Supreme Court making the upcoming decision on the legality of genetic patents), Insurance Companies (Kaiser, Aetna, Blue Cross/Blue Shield, etc.), Medicare/Medicaid Policy Makers, Cultural/Medical Anthropologists Script: Even before I became a mother, I always considered myself to be a warm and nurturing person. If someone became emotional or started to cry, I always thought I knew exactly how to react. (Personal Video starting clear and then transition to blurry) For my graduate t hesis research in medical anthropology, I am exploring access to genetic testing for the genes associated with breast cancer. In the process, I spoke with Janelle about what it was like to survive breast cancer while she watched as the same disease kille d one of her close friends. Janelle and I had been introduced through a mutual friend, but this was the first time we had met in person and suddenly we were talking about life and death. Janelle narrated her story sitting next to me, close enough to tou ch, and then, she cried. I didn't know how to comfort Janelle. I moved a box of tissues next to her, but this gesture didn't reduce the awkwardness I felt as she wept. (change picture books or Kleenex or even personal photo behind) As I prepared for the interviews in my thesis project, I knew that the topic was emotional. Still, I didn't think that Janelle or any of the other women who participated would cry. In my anthropology classes, we learned about data collection methods but we never talked a bout tears or how to address the intense emotions of research participants.
! ! ! 111 (change picture appeal coverage photo) My interviews with breast cancer survivors revealed how genetic tests for breast cancer patients can help a woman make decisions about how to treat her cancer. Virtually all insurance plans do NOT offer coverage for the $3500 price tag for genetic tests. I believe that identifying, analyzing and publicizing patients' perspectives on genetic testing for breast cancer may help pressure insu rance companies to pay for genetic tests for the women who want them. Janelle stated that a genetic test helped her decide between just a lumpectomy for her tumor or the more invasive, bilateral double mastectomy. The test also provided her with awarenes s about her increased possibility for future cancer diagnoses But Janelle had to appeal countless denials for genetic testing coverage and make incessant phone calls to get her insurance to pay for the test. (Return to blurry video) Janelle's story cal ls into question insurance policies that deny patient rights. Why are the people who are suffering from life threatening diseases forced to chose between arduous appeal processes, or silently accepting an insurance company's denial of genetic testing cover age? (More focused video) Even more valuable to me, is how stories like Janelle's, have shown me that being a researcher doesn't mean I have to sit on the sideline and watch awkwardly as someone cries. It's okay to reach out and give that person a hug.
! ! ! 112 Background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iscussion Questions F1,+!0,2!>'<*!*/,&+"'%!+'!+1/!%,**,+"#/!,%6!"(,5/*>!"%! !"##$#% G!D'!>'!+'!21,*/G! H2!*/2/,*&1/*2B!),(".>!(/(-/*2!,%6!&'((<%"+>!./,6/*2B!1'0!6'!0/!./,*%!+'!-/! 21'0!&'(3,22"'%!)'*!+1/!"%6"#"6<,.2!01'!21, */!/('+"'%,..>!"%+/%2/!/=3/*"/%&/2! 0"+1!<2G @%!,66"+"'%!+'!-*/,2+!&,%&/*!01,+!,*/!'+1/*!1/*/6"+,*>!6"2/,2/2!(,>!-/!,%,.>C/6!,%6! 6"22/("%,+/6!#"2<,..>G Video Notes From The Producer My current research study, An Ethnography of Exclusion, focuses on barrier s to genetic testing for hereditary breast cancer. In order to address my research questions, I conducted 3 hour, ethnographic, interviews with 7 breast cancer survivors in the Denver area. Working within a Political Ecology of Health framework, I uncover overlapping Kleenex Digital Story Companion Viewing Guide Emily Mrig Hammad Producer Anthropology Department University of Colorado, Denver Emily.firstname.lastname@example.org 000?>'<+<-/?&'(70,+&1G#IJJK)J:$L /M'N)/,+<*/I>'<+ -/
! ! ! 113 political, social and economic barriers that may deny a person access to genetic testing for the breast cancer genes. One finding from this study revealed is the impact of insurance coverage/plans on a breast cancer patient's access. Insurance was often an emotional touchstone for the participants in my study; you could almost feel their frustration when they shared stories about their struggles with insurance companies. I was surprised by my own emotional response to these interviews. Kleenex i s a digital story designed to address some of the challenges and dilemmas that ethnographic researchers face. This theme is placed within the context of my research study results. Other Resources O<-*"<(!H?!PQQR?!D"5"+,.!S+'*>+/.."%5!,2!,%!/(/*5/%+!(/+1'6 )'*!2'&",.!*/2/,*&1!,%6!3*,&+"&/?! '"()* +,-.-(/-$*'$0*+,'1(/1# ?!TQU!TVW X TRT L/,++"/!YB! #(*'"2 PQTP?!D"))/*/%&/2!"%!$S!1/,.+1&,*/!&'#/*,5/!3'."&"/2!"%! 3456* +/2+"%5!,%6!3'+/%+",.! "(3."&,+"'%2?! +#,7-$'"/8#0*9#0/1/$# ?!R4T8U!Z X V F,%5!O?! #(*'"2 PQQT?![."5"-"." +>!&*"+/*",!"%!3*"#,+/!,%6!3<-."&!&'#/*,5/!3'."&"/2!)'*! 3456 5/%/+"&!+/2+"%5! ,%6!5/%/+"&!&'<%2/."%5?! :#$#(/17*/$*9#0/1/$# ?!T\U!TQ]Z X TQZQ
! ! ! 114 APPENDIX B: INTERVIEW QUESTION GUIDE Breast Cancer Genetic Testing Interview Guide Summary The objective this in terview is to discuss your own experience, or lack of experience, with the genetic testing process for the BRCA 1 and 2 genes. As a breast cancer patient or survivor, you may have a range of knowledge about the BRCA 1 and 2 genes. I am interested in your g eneral knowledge about these genes, but I would also like to learn about your familiarity with the BRCA 1 and 2 genetic tests and perhaps also about your own experience with the testing process. The interview is confidential. I will not connect any person ally identifying information with any of the notes from this interview. You can always refuse to answer the questions or ask me why I'm asking any question. You are also free to stop the interview at anytime. How old were you when you were first diagnose d with breast cancer? Do you have any children or grandchildren? Can you describe what it first felt like to be diagnosed with breast cancer? Could you recall anyone in your family, both on your mother and father's sides, who had also been diagnosed wit h breast cancer? Did your primary doctor or oncologist review your family medical history? Did he/she specifically discuss any family breast cancer history? Probes: Did the physician discuss the hereditary link in some breast cancers? Did the physician(s ) ever mention the BRCA 1 and 2 genes and what they may indicate? Did the physician mention other genetic mutations that may result in hereditary cancers such as p53 mutations? Had you heard about any of these topics before this conversation with your phys ician?
! ! ! 115 After your breast cancer diagnosis, were you concerned that your cancer may have a hereditary component? If so, what concerns did you specifically have? At any point in your experience as a breast cancer patient, did your physician discuss options for genetic testing for breast cancer genes? If not, did you ever ask your physician about these tests? Probes: What was your physician's response to questions about the genetic tests? Did he/she think that you could be a viable candidate for testing? Wh y or why not? Do you feel that genetic testing can provide you with valuable information about your health? For patients who have undergone BRCA 1/2 Genetic Testing Only: What provoked you to make an appointment for Breast Cancer Genetic Testing? Was yo ur genetic test covered by insurance? If no, why was it not covered? Probe: What kind of insurance do you have Medicaid, Medicaire, HMO, PPO, Kaiser, etc. If your test had not been covered by insurance, would you have still wanted to get the test? Pro be: What if you knew the test was a minimum of $3500? If your test was not covered by insurance, but you still had it done, why did you decide to pay for the test out of pocket?
! ! ! 116 APPENDIX C: PRE SCREENING SCRIPT "#$%'!()*+,-$.&-/#!01%$2'!3&%%&45 6!! ;)'$<*=->*?-,*=->,*/$(#,#7(*/$*()/7*7(>0=2* 3#?-,#*=->*1-.#*/$*(-*@',(/1/@'(#A*/(*B->"0*C#*)#"@?>"*(-*7##*/?*=->*',#*"/<#"=*(-*D>'"/?=*(-*C#*/$* ()/7*7(>0=2*E$*-,0#,*(-*0-*()/7A*E*B->"0*"/<#*(-*'7<*=->*F>7(*'*?#B*#"/G/C/"/(=*D>#7(/-$7*'C->(*=->,* 'G#*'$0*' @-77/C"#*.#0/1'"*(#7(*()'(*=->*.'=*)'H#*,#1#/H#02*E(*B/""*('<#*F>7(*'*.-.#$(*(-*G-* (),->G)*()#7#*D>#7(/-$7*'$0*/?*'$=*-?*()#.*.'<#*=->*>$1-.?-,('C"#A*=->*0-*$-(*)'H#*(-* '$7B#,*'$=*D>#7(/-$*()'(*=->*B->"0*$-(*"/<#*(-*'$7B#,2*&-B#H#,A*B/()->(*'$7B#,7*(-*()# 7#* D>#7(/-$7A*=->*B/""*$-(*C#*#"/G/C"#*(-*@',(/1/@'(#*/$*()#*7(>0=2*E*B/""*$-(*,#1-,0*=->,*$'.#*-,*'$=* -()#,*/$?-,.'(/-$*()'(*1->"0*/0#$(/?=*=->*-$*()#*?-,.*E*>7#*(-*,#1-,0*=->,*'$7B#,7*>$(/"*E*<$-B* =->*)'H#*D>'"/?/#0*?-,*()#*7(>0=I*'(*()'(*(/.#A*E*B/""*<# #@*()#*/$?-,.'(/-$*7#1>,#2*E?*=->*0-*$-(* D>'"/?=*?-,*()/7*7(>0=A*E*B/""*/..#0/'(#"=*0#7(,-=*'$=*/$?-,.'(/-$*E*)'H#*1-""#1(#02*E*'.*'"7-* ,#D>/,#*(-*G/H#*=->*()#*$>.C#,*-?*5J9E43A*()#*K()/17*3-',0*()'(*-H#,7##7*->,*,#7#',1)L*E(*/7* MNONP*QRS2TOUUA*/$*1'7#*=-> )'H#*'$=*D>#7(/-$7*-,*1-$1#,$7*?-,*()#.2* * V-*=->*)'H#*'$=*D>#7(/-$7*'C->(*()#*71,##$/$G*D>#7(/-$7*E*B/""*'7<*=->W* * V-*E*)'H#*=->,*@#,./77/-$*(-*C#G/$*()#*D>#7(/-$7W * 78+,-$/),6 &-B*-"0*',#*=->W &'H#*=->*#H#,*C##$*0/'G$-7#0*B/()*C,#'7(*1'$1#,W &'H#*=->*) '0*'*G#$#(/1*(#7(*?-,*()#*3456*T*'$0*R*G#$#7*()'(*',#*'77-1/'(#0*B/()*)#,#0/(',=* C,#'7(*1'$1#,W * 944$-$/)&2!:;#$<-!=/#!>/#+!()=/#%&-$/)!9?/8-!-@+!:-84'6! ! 67*'*@',(/1/@'$(*/$*()/7*7(>0=A*=->*B/""*#$G'G#*/$*'*7)-,(A*R*)->,A*/$?-,.'"*/$(#,H/#B2* E$(#,H/#B7*B/ ""*('<#*@"'1#*'(*.=*M&'..'0X7P*-??/1#A*"-1'(#0*/$*5)#,,=*5,##,*-??/1#*-,*'$-()#,*"-1'(/-$*()'(* /7*C-()*1-$H#$/#$(*?-,*=->A*'7*B#""*'7*@,/H'(#*'$0*7#1>,#2*;)#*/$(#,H/#B7*B/""* /$1">0 #*0/71>77/-$* -$ '*H',/#(=*-?*(-@/17 '77-1/'(#0*B/()*C,#'7(*1'$1#,2*;-@/17*B/""*/$1">0# =->,*#%@#,/#$1#*B/()* ()#*0/7#'7#A*=->,*.#0/1'"*?'./"=*)/7(-,=*'$0*=->,*?'./"/',/(=*B/()*G#$#(/17*'$0*G#$#(/1*(#7(/$G2* Y/()*=->,*1-$7#$(A*E*B/""*C#*0/G/('""=*,#1-,0/$G*() #*/$(#,H/#B7I*)-B#H#,A*E*B/""*$-(*C#*>7/$G*=->,* /.'G#*/$*'$=*-?*()#*.'(#,/'"7*@>C"/7)#0*>7/$G*0'('*1-""#1(#0*?,-.*()#*7(>0=2*Z->*B/""*,#1#/H#*'* 7.'""*G/?(*1',0*'7*'*(-<#$*-?*'@@,#1/'(/-$*?-,*=->,*(/.#*'$0*)#"@*B/()*()#*7(>0=2**E?*()#7#* @','.#(#,7*.'<#*7#$7 #*(-*=->*'$0*=->X0*"/<#*(-*C#*@',(/1/@'$(*/$*()#*7(>0= A*B#*1'$*7#(*>@*'* (/.#*(-*.##(*()'(*B-,<7*B/()*=->,*71)#0>"#2* E*"--<*?-,B',0*(-*.##(/$G*B/()*=->*/$*()#*$#',* ?>(>,#2
! ! ! 117 APPRENDIX D: SAMPLE STUDY RECRUITMENT ADVERTISMENT
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