DES Action Speech at the
1999 National DES Research Conference

This is the speech delivered by Nora Cody on July 20 on the second day of the National DES Research Conference in Bethesda, MD.

30 years ago today man first walked on the moon. It was an incredible scientific achievement, inspiring to millions of people. The lunar landing showed the great potential of science and technology to show us the best humans could do.

30 years ago today DES was still being prescribed to pregnant women in this country and, indeed, around the world. By 1969 scientists had studied this scientific substance for over three decades. Over and over, they had found cancer in laboratory animals. In the famous Dieckmann study in 1953, they had discovered that DES was completely ineffective in preventing miscarriage and in fact more harmful than a placebo.

Yet for all of this scientific inquiry, there was a fundamental failure, and DES showed us the terrible potential for human tragedy from scientific discovery.

Today science offers, not a solution to the problems of the past, but a way to better understand and cope with the future. DES-exposed people that I have met by and large accept the fact of their exposure. What they will not accept is denial of their problems and limitations on research that keep us from learning the full scope of the effects of DES.

Fortunately, they do not have to accept such denial. Gathered here today are scientists willing to look beyond the established wisdom and explore what might be; to open their minds to all of the possible ramifications of DES exposure.

For years now we have received calls, with increasing frequency and urgency, about the possibility of multi-generational DES effects. DES daughters and sons with their own children, or the grandmothers, call and worry about health problems their children are experiencing, or might experience. And for years nearly all doctors and certainly most scientists dismissed the possibility.

Not Retha Newbold, who spoke so eloquently yesterday. She and John McLachlan have worked to understand DES for more than twenty years. Their research on mice does not answer the question about third generation effects on humans. But it does confirm the relevance of such research.

We call upon the NIH to allocate the necessary funds to sufficiently survey the DES grandchildren and upon the scientific community to devote their attention to this subject, so that we may begin to resolve this question. This issue is not only important to the DES-exposed, but as our friend Theo Colborn would no doubt point out, it has significant ramifications for our overall understanding of other endocrine disrupters.

Last night DES Action honored Retha and John McLachlan, Dr. Bob Hoover, and Dr. Arthur Herbst, for their longstanding devotion to DES research. Each has studied DES for over twenty years. Each has remained committed while DES research went in and out of fashion.

Dr. Herbst, with his determination to continue the clear cell cancer registry, has shown the world that there is no upper age limit for clear cell adenocarcinoma of the vagina and cervix. There remains a great deal to understand about this cancer. We also have the challenge of educating many of our health care providers about the fact that their DES-exposed patients need to have the screening exam for clear cell cancer throughout their lives.

Dr. Hoover has expressed through his actions and his words his own personal commitment to continuing the long-term follow-up of DES-exposed and under his leadership the consumer community is now included at the decision-making table.

Our DES community has many concerns. As we age, menopause ranks right at the top of the list. As the final stage of the reproductive cycle for women, there is naturally high interest in whether menopause will be different for DES daughters. The anecdotal reports, and the general feeling, is that DES daughters are going through menopause much earlier than other women. We don't know if this is really true. There has not been enough research.

Secondly, of course, there is concern about menopausal hormones. Is it safe to expose DES daughters to more hormones? No one knows, yet most doctors are quick to reassure women that these hormones must be safe because no harm has been shown. Well, as far as we know, no one has studied this question so we can equally assert that safety has not been established either. Meanwhile, as we wait, DES daughters must daily confront and make a very difficult personal decision.

I must speak as well about DES sons and DES mothers, the poor stepfolks of the DES population. There has been a longstanding neglect of research on the sons and the mothers, and we are eager to learn the results of the long-term follow-up studies. It may be that certain effects on males, such as an increase in prostate cancer, will only be clear as the population ages. But we must make sure that we continue to adequately monitor and investigate all segments of the population so that all effects can be detected.

There is another ironic contrast that occurs to me as I think about what happened thirty years ago today. And that is in the vast resources the U.S. government put into NASA, and the effort to be the first to land on the moon. And then to realize that our government has never conducted even a small national education program to inform the public about DES. We hope to change that in short order.

In 1992 DES Action and the DES Cancer Network worked to pass legislation mandating such a program. The NCI conducted a pilot program with five sites around the country. We went back in 1997 to once again attempt to have Congress mandate a truly national education program, aimed at both health care providers and the public. This legislation passed at the end of last year, and we are still waiting for a plan and a program. We will continue to press for the kind of outreach and education we believe to be necessary to serve the DES community.

We are thrilled to be here and to participate fully in this important meeting. We hope that this meeting sends the message that DES research is important, it is happening, it must and will be funded. We applaud all of the co-sponsors for their interest and support for this meeting, and look forward to a long and fruitful continued collaboration.

DES Action USA
158 S. Stanwood Rd. | Columbus, OH 43209
Ph: 1-800-DES-9288 | info@desaction.org