National DES Advocacy Program:
Report from Washington, D.C.
DES Action meets with National Cancer Institute Director

It was a heady and intense few days for the DES Action staff and Board members who stayed on in Washington, D.C. after the NIH Conference. While the conference was wonderful, we remained concerned about the National Cancer Institute's commitment to adequate funding for DES research. In addition the NCI is now collaborating with the Centers for Disease Control on plans for the National DES Education Program, and is expected to provide most of the funding for such a program. However, the amount of funds for the education program remains unresolved and we needed to do everything we could to press for enough funds to carry out what is necessary.

Here is a roundup of what happened.

On Wednesday, July 21 we met with Dr. Wanda Jones, Director, Office of Women's Health of the Department of Health and Human Services, and with her staff members Susan Wood and Suzanne Haynes. Dr. Jones spoke at the DES Research Conference and has been a strong advocate for DES research. We discussed ideas for DES research the National Cancer Institute might fund. They expressed their strong support, although their office can only advise and cannot compel agencies to act. Later on July 21 we met with aides to Senator Tom Harkin Bryan Johnson and Peter Reinecke. We urged them to get involved and to convey the Senators strong priority for DES research and education to the NCI, and they agreed. We also met with Cindy Pellegrini, aide to Representative Louise Slaughter. Cindy understands our concerns and expressed the willingness of her office to become involved as well. Rep. Slaughter has been a leader for DES research in Congress.

After meeting with Cindy we spoke with an aide to Representative Patsy Mink, a DES mother. He agreed to speak with Rep. Mink to see if her office will also support increased funding for the DES education program.On Thursday, July 22, DES Action staff and Board members met with Dr. Richard Klausner, Director of the National Cancer Institute. Eager to present our concerns to Dr. Klausner, we asked for and were granted this meeting with just one day's notice.As Director of the NCI, Dr. Klausner controls a budget of over $2 billion. We face the challenge of competing with thousands of other pressing cancer-related issues for his attention.

Our goals for our thirty minute meeting were to raise the profile of the DES issue on Dr. Klausner's radar screen, to present our case for adequate funds for DES research and education, and to establish a good relationship. We believe that we accomplished these goals.

1. Reminded Dr. Klausner of the numbers of exposed, and the NCI's obligation to study and help the 10 million Americans exposed to DES. The DES-exposed population represents a unique opportunity, that must not be lost, to study the biology of estrogenization on men and women - a large and willing population. Many DES daughters are now entering menopause, a reproductive watershed that may provide valuable new information as we examine the interaction between changing hormone levels and DES exposure. Additionally, new evidence from NIH studies on third generation animals shows the biological basis for estrogens inducing genetically transmitted disease. This research must be followed with studies of humans, before it's too late and the population is lost to research.
2. We need a broad-based, comprehensive program of consumer and provider education, and we must have adequate resources to carry out the recommendations of the conference. The 5 small pilot projects cost almost $6 million, or nearly $2 million per year. We need at least that amount of money to do a national DES education program.

1. He agrees that the DES-exposed population is a valuable resource and must not be lost or neglected. He met with Dr. Robert Hoover (Director of the Long-term Follow-up of DES-exposed study) and Dr. Ken Buto on July 21 to discuss the cohort studies and ideas for research. Ken Buto is interested in molecular epidemiology - studying some of the questions, e.g. biomarkers and estrogen imprinting, discussed at the meeting. We have a strong advocate in Dr. Robert Hoover. The NCI is committed to funding the cohort studies.
2. In terms of the education program, $6 million is a lot of money. The entire communications budget of the NCI is only $12 million. In the past NCI Directors have just thrown money at problems; he's more interested in results.

We were joined at the meeting by Dr. Sidney Wolfe, director of the Health Research Group and a well known consumer health advocate. He recounted, briefly, his long involvement in DES, which includes pushing for and serving on the two federal DES Task Forces (one in 1978 and the second in 1985). He talked about how the history of this issue is that interest wanes and we have to come back and kick up a fuss. He is ready and willing to help raise the profile of the DES issue.

Overall, the meeting went well. We did not expect to get a financial commitment right now, and we will have to wait and see what materializes in terms of dollars for DES research and education. I know that we can count on DES Action members to get out their letter-writing pens if necessary, to continue to pressure the National Cancer Institute to give DES research and education the priority they deserve.

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