107th Congress

Diabetes: Is Sufficient Funding Being Allocated To Fight This Disease? -- Permanent Subcommittee on Investigations -- Senate Governmental Affairs -- June 26, 2001

Members Present

Carl Levin (D-MI), Chairman; Susan Collins (R-ME), ranking member; Daniel Akaka (D-HI); Jean Carnahan (D-MO).

Witnesses

Panel One: Mary Tyler Moore, actress, living with diabetes; Kevin Kline, actor, Board Member, Juvenile Diabetes Research; Jonathon Lipnicki, actor, friend of a child with diabetes; Captain James Lovell, former NASA astronaut, son with diabetes.

Panel Two: Dr. Allen Spiegel, Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), NIH; Dr. Hugh Auchincloss, Professor of Surgery, Massachusetts General Hospital and Harvard Medical School; James Robbins, President and CEO Cox Communications, daughter with diabetes; Greg Brenneman, Former CFO, Continental Airlines, son with diabetes.

Panel Three: Rachel Dudley, 15; Andrew Webber, 13; Eliza Jayne Kiley, 5; Daniel Thaller,13. All are delegates to the Juvenile Diabetes Research Foundation Caucus.

Summary

Purpose of Hearing: This hearing was held in conjunction with the Second Juvenile Diabetes Research Foundation Children's Congress, which was attended by 200 children from across the country. It was a very friendly hearing. The hearing was an opportunity for those suffering from juvenile diabetes and their families to share their experience with the disease and give them the opportunity to urge members of Congress to provide more money for diabetes research. The message from the Children was "Please Promise to Remember Us." In addition, Dr. Speigels and Auchincloss discussed the promising research in this area. Dr. Speigel stated that "we are well on our way to developing more effective treatment and prevention strategies. We are working toward a true cure."

Opening Statements: Senators Levin, Collins, Akaka and Carnahan all gave opening statements that reiterated their commitment to diabetes research and their admiration for these children who live day to day with this disease. All agreed that there is no greater investment to be made than for biomedical research. Senators Levin and Collins both spoke of their support for embryonic stem cell research, which currently appears to hold the greatest potential for a cure for diabetes. Senator Levin said that he hopes the Administration takes to heart recent statements from staunch pro-life Republicans, Senator Orrin Hatch (R-UT) and former Senator Connie Mack (R-FL), that it would be inhumane to deny the benefits of embryonic stem cell research for those who can be saved by that research. Senator Collins stated that she recently wrote a letter to President Bush urging him to make the right decision with regards to the NIH guidelines on stem cell research.

Statements of Witnesses

Panel One

Members of the first panel all spoke of the need for increased funding to further diabetes research in the hopes of finding a cure in the near future. Mary Tyler Moore, who has lived with juvenile diabetes for 30 years, raised the issue of embryonic stem cell research. She argued that embryonic stem cell research is life affirming. She stated that it is the direct outcome of young families choosing to donate fertilized eggs, which otherwise would be discarded, and is similar to a family choosing to donate organs of a child who died. Further she added that the true pinnacle of charity is to give life to another. Jim Lovell, former astronaut whose son has diabetes, stated that he never felt more helpless than when his son called him with the news that he had been diagnosed with juvenile diabetes. He argued that funding for research must be increased and if you look at these children you realize that failure is not an option.

Panel Two

Drs. Spiegel and Auchincloss spoke of the status of diabetes research. Dr. Spiegel began by discussing the commitment of the NIH to learn more about diabetes and to find a vaccine or a cure for the disease. Both discussed the recent study in Edmonton, Alberta, Canada, in which islet transplantation permitted a small number of adults with type 1 diabetes to remain healthy for a year. The NIH is now expanding clinical studies to exploit and extend these impressive findings. In addition, he said that NIH is working to resolve the issues that prevent universal islet transplantation: 1) the inadequate supplies of islets, and 2) the imperfect methods to prevent transplant rejection. With regards to the latter, the adults who received the transplanted islet cells have to take a potentially toxic immuno-suppressent drug daily for the rest of their lives. This is the primary reason islet cell transplantation cannot be done on children. In addition, Dr. Spiegel discussed the collaborative research initiatives that NIDDK is supporting with other NIH Institutes to reduce and prevent the complications associated with diabetes. Dr. Auchincloss also discussed research underway to find a cure for diabetes. He stated that the research that appears to hold the most promise is to learn how to differentiate embryonic stem cells into insulin producing cells. He said that in the past year, scientists have succeeded in guiding cells of this type to turn into what have been called "pre-islet" cells. These differentiated cells have produced insulin, but not yet in normal quantities. Further he stated that this was a dramatic step forward making this the most promising avenue of research toward developing an endless supply of insulin-producing cells for transplantation. He cautioned that there is a misunderstanding that adult stem cells are just as good as embryonic stem cells. He said that one day we might know this to be true, although we do not know that today. Further he stated that on the contrary, there is considerable scientific evidence suggesting that embryonic stem cells have major advantages over any other source of cells. The other two witnesses on this panel, James Robbins and Greg Brenneman, both successful businessmen and fathers of children with diabetes, spoke about their experiences as a parent of a child with diabetes.

Panel Three

The final panel was made up of children who suffer from juvenile diabetes. Their stories were all touching accounts of how they deal with the disease everyday (as one child stated: "There is no day off from diabetes".)

Questions:

During the question and answer session, the questions were directed primarily to Drs. Spiegel and Auchincloss.

Senator Levin

Senator Levin asked Dr. Spiegel if he had seen the stem cell report which the New York Times has reported was sent to Secretary Thompson. Dr. Spiegel said that he had seen a draft. Senator Levin asked if the report was still in draft form, to which Dr. Spiegel answered that yes, as far as he knew. Senator Levin also asked whether it was someone at NIH who made the determination in the Clinton Administration to allow Federal funds to be used for embryonic stem cell research. Dr. Spiegel tried to clarify the situation and explained that the current NIH guidelines are on hold. He explained that the current situation does not allow Federal funds for the derivation of stem cells from human embryos but private funds could be used for that purpose. He further clarified that NIH is funding embryonic stem cell research using mice.

Senator Collins

Senator Collins asked Dr. Spiegel about the lack of supply of islet donor cells. Dr. Spiegel explained that the only source of cells so far is from human cadavers and that only 2000 become available each year. Dr. Collins asked Dr. Auchincloss to explain in further detail the differences between adult stem cells and embryonic stem cells. Dr. Auchincloss explained that embryonic stem cells are better able to proliferate more cells indefinitely. Further he added, the research appears more promising that these cells can differentiate into any cell type including cells that are able to produce insulin. Dr. Auchincloss said that his biggest concern is if the government does not fund embryonic stem cell research that young scientists will not move into that field since government grants are important sources of income for young researchers.

Prepared by Lauren Higgins/OD/OLPA