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Out Of The Closet And Into The Legislature: Breast Cancer Stories
In living color twenty-three figures appear in photographs before and after breast cancer surgery in Show Me, a recent book in both print and online forms. The women display in stark detail lumpectomies, mastectomies, and reconstructions, along with their individual reactions to these treatments. Clearly, women have come a long way since the stigmatized silence of twenty years ago, when poet and cancer sufferer Audre Lorde urged them to "become visible to each other" in order to "translate the silence surrounding breast cancer into language and action." Her statement was considered revolutionary because, with few exceptions, women then did not disclose their personal stories of breast cancer to one another privately, let alone publicly. Yet by the 1990s the walls of silence had crumbled, and personal narratives of living with breast cancer became nearly ubiquitous—through conversations, popular books, newspapers and magazines, television, and Internet chat rooms. Personal stories of breast cancer have raised social awareness, destigmatized the disease, and been key in creating significant changes in health policies. Legislative allocations, medical standards of care, and scientific research priorities have all been altered by women’s storytelling about breast cancer. Shifts in policy influenced by powerful illness narratives have been mainly positive, but sometimes compelling stories can lead to undesirable outcomes as well.
Audre lord wonders in The Cancer Journals, "What would happen if an army of one-breasted women descended upon Congress?" Lorde presaged the notion that women with breast cancer can join together to influence the policy-making process. She alerted us to the idea that shared biographies are integral to advocacy, and advocacy, of course, can alter policy. Indeed, in the words of Rose Kushner, "It helps to be stubborn and have a loud voice." Even before Lorde’s vision of women with breast cancer descending upon Washington, another woman’s foresight had brought change to medical practice. In 1975 Kushner, a journalist and cancer survivor, put her investigative skills to use in understanding the life-threatening disease that afflicted her. Breast Cancer: A Personal History and an Investigative Report was a brief account of her own illness, with a lengthy analysis and critique of the then current epidemiological and clinical approaches to breast cancer. Kushner called for women to participate in making their health care decisions in an informed manner. Her book was excerpted in newspapers and women’s magazines, and remained in circulation until the early 1990s.With instincts far ahead of her time, Kushner brought to the surface a number of policy-related issues still debated today, including environmental toxins, the limits of mammography in detecting cancer, the dangers of irradiation, and the need (or not) to undergo mutilating surgery. Kushner’s most direct impact on policy involved the question of why it was standard medical procedure for physicians to perform a one-step biopsy and mastectomy. Patients were routinely expected to give consent to this procedure before anesthesia, thus facing the terrifying prospect of waking up to find a confirmed diagnosis of cancer and their breast gone—all in one fell swoop. Kushner found a well-qualified physician who agreed to a two-step process for her that separated biopsy results from surgical treatment. This gave her a chance to rebound from the bad news about her biopsy result and consider her options. Her subsequent research supported her argument that a two-step process would benefit women psychologically while not harming their prognosis. Based on this information and her own tenacity, Kushner single-handedly lobbied the cancer establishment to change the customary treatment, which had been based on tradition and paternalism rather than evidence. Her efforts resulted in a change of standard clinical procedure to the two-step biopsy and treatment decision—an amazing feat for a lone citizen-activist. Fortunately, today’s Rose Kushners needn’t act alone.
We start today’s program with a moment of silence for Marian Cortez [not her real name] who died April 3 of this year, two months from her fiftieth birthday...Her passion for finding a cure for this disease to save her daughter from its ravages was as great as her compassion for those afflicted with it." Thus opened a plenary session at a National Breast Cancer Coalition (NBCC) advocacy training conference in 1999. The NBCC, formed in 1991, now comprises more than 500 groups and 60,000 individuals. Its mission is to promote research; improve access to screening and treatment, especially for the underserved and uninsured; and increase survivors’ influence in creating and implementing legislation, regulation, and clinical trials. For the past nine years the group has sponsored an annual advocacy training conference, attended by hundreds. Participants are provided information on new medications, research initiatives, and legislative process, to enable them to speak with credibility about the legislative priorities identified by NBCC. (In 1999 priorities included increased funding for peer-reviewed research, follow-up treatment for women found to have cancer through federal screening programs, and insurance coverage of treatment for people participating in clinical trials.) The beginning of each half-day session is marked by a tribute to a deceased person, remembered for her efforts in breast cancer advocacy. These remembrances take the form of a mini-narrative of the person’s life and contributions, while her image is shown on wide-screen monitors. The memorials are poignant, reminding each participant of her own mortality, underscoring the importance of the day’s activities, and vividly illustrating the direct link between health legislation and individual lives. The conference culminates in Lobby Day, when participants noisily demonstrate outside Congress, then organize by state to talk with their elected representatives about the NBCC’s prioritized issues.
On the other side of the equation legislators can be especially receptive to cancer narratives when they or someone they love has had cancer, or when constituents convey cancer stories. Two examples spanning both sides of the political aisle in Congress underscore the power of health narratives to affect political agenda setting. Sen. Tom Harkin (D-IA) has championed funding of various medical research projects throughout his lengthy career. Breast cancer has been his central focus over the past decade. Harkin—a senior member of the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education—characterizes cancer as "a leading killer." His interest in the disease is also influenced by the fact that according to his office, "his only two sisters died at a young age from breast cancer. Neither of them had ever had a mammogram, and if they had, he strongly believes they would be alive today." His legislative achievements include dramatically increasing funding of breast cancer research and creating treatment, prevention, and screening programs for lower-income women. Members of Congress don’t have to be personally involved with the disease to be moved by cancer stories. Former Sen. Alfonse D’Amato (R-NY) had also been a member of the Senate Appropriations Committee. To my knowledge, D’Amato did not face a personal or close familial encounter with cancer, as did Harkin, but was swayed by the stories of a large number of Long Island constituent-survivors who suspect an environmental link to the cancer cluster in their community. The senator’s motivation may have begun as a political move to procure women’s votes, but D’Amato became a valuable ally to several local advocacy groups and the NBCC.
Personal accounts of illness can create a huge stir but may not always result in positive consequences. One case in point is the story of Nelene Fox, a thirty-eight-year-old California mother of three. In 1993, after being diagnosed with advanced breast cancer and exhausting all conventional therapies, she was advised by her doctors that her only remaining chance for survival was an autologous bone marrow transplant (ABMT), a risky process involving extremely high doses of chemotherapy. Her HMO refused to pay for the $140,000 procedure because the treatment was classified as "experimental," meaning that insufficient scientific evidence existed to prove that it extended a patient’s life. Fox’s local community raised the money for treatment, but she died soon after it. Sympathizers speculated that she was unable to begin treatment in time to get the beneficial effect. Her brother, a lawyer, sued the HMO and convinced the jury to award $89,000 in damages to her family. Similar lawsuits with similar results soon followed. Questions that many physicians had about the efficacy of ABMT were compounded by prolonged difficulty in recruiting enough subjects for controlled clinical trials, since patients with advanced disease were repeatedly told at cancer centers that this treatment had shown promise. Media publicity about the Fox case succeeded in forcing widespread insurance reimbursement, further discouraging patients from enrolling in clinical trials. Thus, conclusions about the efficacy of the treatment were tragically delayed until 1999, when the National Cancer Institute announced that, based on available studies, ABMT does not benefit persons with breast cancer. The Nelene Fox story and others like it persisted for nearly decade. For years women fought to have ABMT, even though there was little or no data to support this choice. As John McDonough notes in the previous essay, going this route meant that the evidence that can only come from clinical trials was tragically delayed. In the end, we have come to discover that the insurers had valid grounds for their decision to withhold payment and that we held on to story of false hope for much too long. Personal breast cancer stories have inspired efforts by citizen advocates and legislators to provide better care and more resources for the disease. But as the ABMT experience makes painfully clear, individual stories should not be taken as scientific proof.
Breast cancer stories’ influence on policy also raises larger, more difficult questions about how the national health care budget should be determined, as each disease-specific group organizes to ask for more attention and increased funding. Breast cancer advocates in the 1990s adopted the successful strategies of AIDS activists in the previous decade. Breast cancer advocacy, in turn, is informing efforts to focus on ovarian and prostate cancers, and the list of disease advocacy groups continues to grow. NBCC leaders argue that we should increase the total budgetary pot for health care so that all problems are adequately addressed, but this solution seems hopelessly unrealistic. Prevention, for example, continues to be shortchanged, despite the fact that national health care spending is already at an all-time high. Narratives about disease invariably lead to the question of how we decide which disease deserves the most notice. Should disease incidence rather than visibility be emphasized as a more important criterion for policy concern? If so, then heart disease, which hasn’t generated as many moving stories as have AIDS and breast cancer, should be our nation’s central focus. The public and Congress have heard most about AIDS and cancer because of the vocal strength of those constituents. But heart disease, the biggest killer in this country, affects far greater numbers: More than 500,000 women die from cardiovascular disease each year, compared with 43,000 from breast cancer. Yet the National Institutes of Health budget to research heart disease is half a billion dollars less than that for AIDS, which ranks seventeenth among diseases causing mortality in the United States. Do heart disease advocates need to create more affecting personal illness stories? It seems inevitable that the squeaky-wheel-gets-the-grease approach to appropriations will pit one worthy group against another, or that attention will pivot from one priority to the next before long-term outcomes can occur. Personal narratives are powerful, rhetorical strategies, as well as humane expressions of suffering and memorials to loved ones. The riveting communication of such narratives enlightens our understanding of what it means to live with breast cancer (or Alzheimer’s or Parkinson’s or spinal cord injury). As a society, however, we need to develop more sophisticated criteria for evaluating illness narratives. This is a knotty task because stories of suffering have authenticity and validity for the teller and for fellow sufferers. In using personal narratives to affect health policy, the challenge is to effectively combine the emotional pathos and character-related ethos of stories with the other form of rhetorical proof, logos (the rational). Recipients of illness stories—be they lawmakers, policy wonks, or the public—face difficult questions. What are the criteria for making judgments about stories as a basis for generalizing public policy? How do we distinguish among competing narratives when all are compelling? Is it possible to move to a different level of storytelling, one that transcends competing narratives? The value of grappling with such complex questions is self-evident to those of us who remember an era when women didn’t tell breast cancer stories.
Barbara F. Sharf <bsharf{at}tamu.edu> is professor of speech communication and of humanities in medicine at Texas A&M University in College Station, Texas. This study was partially funded through U.S. Department of the Army Grant no. DAMD17-97-1-7240.
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