JDF Washington Report
Vol. II, No. 11
May 21, 1999
JDF Research Chair Sandra Puczynski and Daughter Michelle Speak at Capitol Hill Stem Cell Research Press Conference to Unveil Public SupportPatient's Coalition for Urgent Research (Patient's CURe), a coalition of national voluntary health organizations such as JDF, the American Cancer Society, Parkinson's Action Network, Paralyzed Veterans of America, the National Health Council and others who publicly support federal funding of stem cell research through the National Institutes of Health. The Coalition released a survey at a Capitol Hill press conference on May 20 that showed a 74% (3 out of 4 people surveyed) public approval of federal funding for stem cell research.
Fifteen-year-old Michelle Puczynski, JDF Volunteer from Toledo, Ohio, addressed the press event with her mother, Sandra. "I was diagnosed with juvenile diabetes at 13 months. Since then I have taken 16,500 injections of insulin just to survive." Michelle's mother, Sandra, Chair of JDF's Research Committee told the audience about JDF's $55 million private research budget and her promise to Michelle to do all she could to find a cure for her daughter. Others participating in the press conference included stem cell pioneer Dr. John Gearhart of the Johns Hopkins Hospital, James Maurer, who suffers from Parkinson's disease, Association, Dan Perry, Executive Director of the Alliance for Aging Research, Harley Thomas, who suffers from spinal cord injury and Dr. Glenn McGhee, an ethicist from the University of Pennsylvania. For more information about stem cell research and JDF's statement, see our website at www.jdfcure.org.
Diabetes Caucus Co Chair Nethercutt Delivers Floor Speech on Diabetes Research Working GroupSee http://www.house.gov/nethercutt/diabetes.htm to learn more about the Congressional Diabetes Caucus. Representative Nethercutt delivered the following statement on the floor of the House of Representatives:
ENACT THE DIABETES RESEARCH WORKING GROUP REPORT
(House of Representatives - May 19, 1999)
The SPEAKER pro tempore.
Under a previous order of the House, the gentleman from Washington (Mr. Nethercutt) is recognized for 5 minutes.
Mr. Speaker, 2 months ago the Diabetes Research Working Group released its report entitled 'Conquering Diabetes: A Strategic Plan for the 21st Century.' This document was a result of over a year of effort on the part of 12 scientific experts and four representatives from the lay diabetes community. Support was provided by dozens of other individuals both from within the National Institutes of Health and from outside the NIH.
The Working Group was established by Congress as part of the Fiscal Year 1998 Appropriations Act and based on legislation I introduced in the last session of Congress. It requested that NIH establish the Group to develop a comprehensive plan for NIH-funded diabetes research. Dr. Ronald Kahn is an outstanding physician and scientist. He was selected the chairman of the group. He has spent literally thousands of hours meeting and talking with countless individuals to establish a consensus on the direction of diabetes research. The report has exceeded all expectations. It clearly details the magnitude of the disease both on the individual and on our society.
On an individual level, diabetes affects virtually every tissue of the body with severe damage. Since 1980, the age- adjusted death rate due to diabetes has increased by 30 percent, while the death rate has fallen for other common diseases, such as cardiovascular disease and stroke. Diabetes affects about 16 million Americans, with 800,000 new cases diagnosed each year.
The societal impact is likewise staggering. One in four Medicare dollars are spent to treat people with diabetes. And over one in 10 health care dollars spent are spent for diabetes. In economic terms, the cost to society is over $105 billion each year.
The report identifies five areas of extraordinary research opportunities for making progress in understanding and treating and ultimately preventing and curing diabetes. These five areas are the genetics of diabetes and its complications; autoimmunity and the beta cell; cell signaling and cell regulation; obesity; and clinical trials and research. Within each area, specific research recommendations are made, and in all areas rapid advancements are anticipated.
Finally, 'Conquering Diabetes,' the name of this report, presents an analysis of current spending and estimates, program-by-program, of the cost of implementing each opportunity. Current spending, the group reports, is far short of what is required to make progress on this complex and difficult problem. They calculate that an increase of $384 million in fiscal year 2000, rising to $1.166 billion in fiscal year 2004 is, quote, required to have a robust and effective diabetes research effort, one which will reduce the rising burden created by this debilitating disease.
The release of the report has generated extraordinary interest among the scientific community, Mr. Speaker. Some argue that advances in research must be present to generate an increased NIH portfolio, while others argue that the presence of research dollars will generate advances as in the case of AIDS. By either standard, the time to establish a national commitment to diabetes research is now.
Mr. Speaker, Congress must seize upon the momentum in diabetes research and fully enact the Diabetes Research Working Group Report recommendations. It will take a commitment of $827 million in the next fiscal year. The scientific community has united to develop a concrete plan and now it is up to the Congress to unite to make this plan a reality. I must conclude, Mr. Speaker, by saying that this is a very important initiative for our country. I know it is going to be a difficult year economically for the appropriations subcommittee that has to deal with this issue, but I must say it is in the Nation's best interest, it is in the interest of scientific research and the diabetic and all the complications that come from diabetes that the Congress step up and say $827 million is the number. I urge my colleagues to support this initiative in the House.
JDF Awards $10 Million to Fund Islet Cell TransplantationJDF announced a major boost toward a cure for Type 1, or juvenile, diabetes by funding eight new programs on human islet transplantation research. JDF provided grants totaling more than $10 million to these international centers. These programs will dramatically increase laboratory research on the insulin-producing cells, and put clinical trials of islet cell transplants on a fast track. For the full story, see http://www.jdfcure.org/pubinfo/news051899.html.
JDF Escorts Miss America 1999, Nicole Johnson, on more Senate VisitsMiss America 1999, Nicole Johnson, and JDF staff visited key senators to talk about diabetes research funding, the Senate Diabetes Caucus and the JDF Children's Congress. Nicole met with Senate Diabetes Caucus cofounders Senator Charles Grassley (R-IA), Senator Susan Collins (R- ME), and Senator Pete Domenici (R-NM). She also had successful meetings with other Senate medical research champions. Chairman of the Senate Appropriations Committee Ted Stevens (R-AK) voiced his support for finding a cure for diabetes, as did the Senate's only physician, Senator Bill Frist (R-TN). We applaud Nicole's advocacy efforts to promote full funding for $827 million and expansion of the new Senate Diabetes Caucus.
May 21 Deadline for Senate Signatures for Diabetes Education LetterA Dear Colleague letter is being circulated in the Senate by Senate Caucus CoChairs John Breaux (D-LA) and Sue Collins (R-ME) that asks Senators to support a communication to HCFA Administrator Min-DeParle. The letter explains problems with the current proposed rule on Medicare coverage for diabetes education. Much like the letter circulated around the House of Representatives last month, the letter focuses on issues regarding access to available diabetes education programs and patient eligibility. The deadline for Senators to join this letter is Friday, May 21st. The following Senators have signed the letter: Breaux (LA), Collins (ME), Boxer (CA), Chafee (RI), Domenici (NM), Frist (TN), Grassley (IA), Jeffords (VT), Mikulski (MD), Santorum (PA), Schumer (NY), and Snowe (ME). The American Association of Diabetes Educators has been taking the lead on this issue. To learn more, go to www.aadenet.org
Juvenile Diabetes Foundation - Government Relations
1400 I Street, NW #500
Washington, DC 20005
1-800-JDF-1VOTE ex. 5 (800-533-1868)
Posted 23 May 1999
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