Advocates' Remarks, DES Research Update 1999: Current Knowledge, Future Directions

IV. Advocates' Remarks

Presentation by Nora Cody
Presentation by Susan Helmrich

Susan Sieber, Ph.D., Associate Director for Special Projects, Office of the Director, NCI, noted that DES activists have been integral to the planning of and participation in this meeting. They have been instrumental in developing the content and format of the workshop and are key players in the larger DES community.

Presentation: Nora Cody, DES Action USA

Nora Cody, M.A., Executive Director, DES Action USA, opened her presentation by noting that, 30 years ago, to the day, man first walked on the moon--an incredible scientific achievement that inspired millions. The lunar landing demonstrated the great potential of science and technology to show the best of humanity.

Yet, 30 years ago, DES was still being prescribed to pregnant women in this country and around the world. By 1969, scientists had studied DES for more than three decades and consistently had found cancer in laboratory animals given this agent. The landmark Dieckmann study, published in 1953, reported that DES was completely ineffective in preventing miscarriage and premature births in humans and appeared to be more harmful than a placebo. Despite this extensive scientific inquiry, there was a fundamental failure in responding to the available information that clearly showed not only the ineffectiveness but also the harm of DES.

Today, science does not offer a solution to past problems but a way to better understand and cope with the future. DES-exposed persons, overall, accept the fact of their exposure. What they do not accept is denial of the problems that exist as a result of exposure to DES or limitations on research that keep researchers and patients alike from learning the full scope of the effects of DES. Fortunately, Ms. Cody continued, DES advocates share company with scientists who are willing to look beyond the established wisdom and explore possible future ramifications of DES exposure.

DES advocates increasingly are concerned about the possibility of multigenerational effects of DES. DES daughters and sons, many of whom are now parents, and DES grandmothers (the original DES mothers) are worried about potential DES-induced health problems that their own children and grandchildren are experiencing or may experience. Until recently, the scientific and medical communities as a whole did not seem to share these concerns. Those involved in basic DES research for years, however, recognized the potential for third-generation effects of DES. Retha Newbold's and John McLachlan's work with laboratory animals, for example, does not answer questions about DES grandchildren but does confirm the relevance of such research.

Advocates call on the NIH to allocate the necessary funds to sufficiently survey the DES grandchildren and on the scientific community to devote time and attention to this subject so that questions may be answered. This issue is relevant not only to the DES exposed; indeed, as noted throughout this workshop, this research has significant relevance to the overall understanding of endocrine disruptors.

Ms. Cody noted that DES Action recently honored Ms. Newbold, Dr. McLachlan, Dr. Hoover, and Dr. Herbst for their long-standing devotion to DES research. Each of these researchers has studied DES for more than 20 years and each has remained committed to the study of DES while "mainstreaming" of the issues surrounding DES has come in and out of fashion. For example, Dr. Herbst's continued commitment to the DES CCAC registry has confirmed that there is no upper age limit for diagnosis of this disease. The DES community also faces challenges with regard to educating health care providers on the current state of DES exposure and outcomes and on the need for continued screening of DES patients throughout their lives. Dr. Hoover has remained committed to long-term follow-up of DES-exposed persons, and under his leadership, consumers are now included in the decision-making process.

The DES community has many other concerns, with menopause a top issue as DES daughters age. Because menopause is the final stage of the reproductive cycle for women, the interest in whether menopause will be different for DES daughters is natural. Anecdotal reports suggest that DES daughters may go through menopause earlier than the general population. However, further research must be conducted to confirm such reports. Related concerns involve the use of menopausal hormones: Is it safe to expose DES daughters to more hormones? Again, science has not yet provided an answer to this question, but most physicians generally are comfortable prescribing these hormones to DES daughters because no harm has been shown with their use. Realistically, however, neither harm nor safety has been established. Until such studies are conducted, DES daughters face additional unknowns regarding their health and health care decisions.

In continuing her presentation, Ms. Cody commented on DES mothers and sons, who historically have not been actively included in DES research. Advocates are eager to learn the results of long-term follow-up studies of these groups. She recognized that certain effects in males, such as a possible increase in prostate cancer, may not be clear until the population ages. Even under these conditions, researchers must continue to monitor and investigate all segments of the exposed population adequately so that the full range of effects can be detected.

In addition, Ms. Cody noted, advocates hope that, with new legislation in place, the government will now provide the resources necessary to conduct a national educational program to inform the public about DES. In 1992, DES Action and the DES Cancer Network worked to pass legislation mandating a national DES education program. Under that directive, the NCI conducted a pilot education program with five sites around the country. In 1997, advocates returned to Congress in support of legislation for a truly national education program aimed at both health care providers and the public. This legislation passed in late 1998, and advocates hope to soon see a plan and a program in place to implement the mandates of this law. The DES community will continue to advocate for the type of outreach and education necessary to serve this community.

Ms. Cody closed her talk by sharing her appreciation that advocates were able to be full participants in this meeting and by applauding the workshop cosponsors for their interest, support, and collaboration. The ultimate message of this meeting, she noted, should be that DES research is important, ongoing, and must continue to be funded.

Presentation: Susan Helmrich Ph.D., DES Cancer Network

Susan Helmrich, Ph.D., Co-chair, DES Cancer Network (DCN), first recognized the DES cancer survivors in the audience and then thanked the researchers, clinicians, and attorneys who have dedicated their work to saving lives. Dr. Helmrich pointed out that much has been accomplished since the last meeting in 1992 and that this meeting, which again gathered together activists, scientists, clinicians, NIH grantors, policy makers, health educators, and attorneys, to discuss DES research, education, and clinical practices, was a long time coming. How far have we come since then? What do we currently know? What will we learn in the future? For DES advocates, this conference is a critical step in helping to answer these questions, which revolve around current and future health concerns and continued funding for education and research, including the registry at the University of Chicago. The registry is of particular importance because it provides the most current, complete, and detailed data in the world regarding DES-related cancer.

As Dr. Helmrich explained, the DCN is a consumer advocacy group that she cofounded and now co-chairs with Carol Perry. The DCN provides support to DES-exposed women who have developed CCAC of the vagina or cervix and their families. Current data from the registry suggest that approximately 715 women are known to have developed this disease. Of these, 65 percent are alive, 26 percent have died, and the remaining 9 percent have been lost to follow-up. If diagnosed early, women with CCAC have a very good chance of survival. A total of 320 people in the registry have survived at least 5 years. Women with CCAC turn to the DCN and the registry for answers to health questions, for help finding a gynecologic oncologist, and often, for moral support. Further, the registry is where physicians treating women with CCAC can turn to for advice.

All those who have been exposed to DES must come to the realization that they will never "outgrow" their exposure to this compound. And because the effects of exposure with age are unknown, some level of uncertainty is another part of this realization. However, as research continues, new information becomes available. For example, through the registry, researchers and advocates now know that DES-related CCAC is not limited to younger women but can appear at any age, that is, there is no known upper age limit for the disease. Fifty-six women in the registry were first diagnosed with CCAC after reaching the age of 30 years; 14 of these women were more than 40 years old at the time of diagnosis. The DES-exposed cohort also must be monitored closely as those in the cohort reach and go through menopause.

On a more personal note, Dr. Helmrich then turned to her own story and noted that she would soon reach the 22nd anniversary since her first surgery for CCAC of the vagina. As she observed, her story is not unlike that of many other DES daughters. Only 21 1/2 years old at the time of diagnosis with CCAC, Dr. Helmrich had just graduated from college. At that time, she underwent a 10 1/2-hour operation that removed her vagina, uterus, fallopian tubes, and lymph nodes. Her vagina was reconstructed using a portion of her colon. Since then, Dr. Helmrich has had six major surgeries and required 17 hospitalizations. She recently was diagnosed with a carcinoid tumor in the left bronchus and underwent another surgery for removal of the superior lobe of her left lung. Whether this cancer was DES related is not clear. However, it is an interesting and provocative question that points to the possibility of other, unknown or unanticipated health problems that may arise as the DES cohorts age.

Such unknowns, combined with data such as those showing no upper age limit for DES-related CCAC, point to the need for a well-funded registry. Every DES-exposed woman must be vigilant about her own health care and be followed by a physician trained to treat DES-exposed women. The community should not become complacent about the health of DES mothers, sons, and grandchildren. Dr. Helmrich encouraged all to join her in being attentive to DES issues--such as through research, advocacy, education, or providing health care. Continued work and ongoing partnerships will be key to healing the DES legacy and the legacy of other toxic exposures.