Ms. Hoover Goes to Washington

| May 1, 1998

Ever wonder what goes on behind the political machinery of our Nation's Capitol? How exactly do our congresspeople find out what's really important to people with diabetes? Patient advocate and long-time DIABETES HEALTH contributor Joan Hoover found out firsthand when she was recently invited to Washington, D.C., for the Congressional Biomedical Research Caucus Briefing on diabetes research. Here is her personal account of that meeting.

The setting was magnificent all the way up the curving marble staircase, through the 14 foot high doorway and into the Caucus Room of the Cannon House Office Building in Washington, D.C., The ceiling of this huge and imposing room was ornately carved and gilded. It was carpeted in a regal red plush, and at the far end was a two tiered mahogany dais to elevate our elected officials.

The occasion was a Congressional Biomedical Research Caucus Briefing. The subject was diabetes and among the member of Congress who attended the luncheon and spoke briefly to the assembled group were: Speaker of the House, Newt Gingrich (R-GA), George Gekas (R-PA), Sam Gejdenson (D-CT), Joseph Kennedy II (D-MA), and George Nethercutt Jr. (R-WA).

The group assembled seemed to include friends and staff of the Joslin Diabetes Center in Boston, who were hosts of the luncheon, as well as local members of the Juvenile Diabetes Foundation, ADA members who had been in town the previous two days to discuss and encourage federal diabetes funding and staff members from the offices of many members of Congress. The latter are particularly important participants, as they gather facts and impressions to take back to the congressman or congresswoman for whom they work. This is primarily the information upon which the congressman or congresswoman will base his or her votes.

Congressman Gekas opened the session with the enthusiastic statement that out goal in the 21st century should be to eliminate all disease from the face of the earth. This raised a daunting prospect, however, since this would create as many population problems as it solved. Still, we were pleased by his optimistic tone. Senator Storm Thurmond (R-SC) was introduced and at age 95 declined to address the group, but received a standing ovation - I guess for durability. Later in the program, Joe Kennedy remarked, only half in jest, that instead of promoting biomedical research perhaps we ought to just find out what Storm Thurmond eats for breakfast.

The session began with brief remarks by each of the attending congressman. Congressman John Porter (R-IL) was recognized for having originally assembled the Biomedical Caucus. He felt at the time, that few private organizations could afford to take the long-term risks that research demands. And if the Federal government was to provide financial help, the Members needed an opportunity to better understand the subject upon which they would have to vote. This diabetes meeting was the 64th session of the Caucus.

Newt Gingrich pointed out that more good biomedical research would result in higher quality medical care at a lower cost. He surmised that diabetic kidney complications and amputations could be reduced by two-thirds, and he called for a doubling of federal research funding, not just for diabetes, but for all biomedical research. He also made a strong case for providing more information to the general public via the Internet.

Congressman Gingrich, advocated a new approach to medical care, which would be driven by informed patients. To illustrate his point, he said that education is driven by the teachers, but learning is driven by the student, and noted that with our new access to information we had the opportunity to know more about our illness than many of our doctors. Then he asked, provocatively, "What was the age of the last doctor you went to? And how much did he know about cell biology?"

Congressman Nethercutt emphasized that diabetes is becoming a worldwide epidemic and described a recent visit to some diabetic children in an orphanage in Bosnia. He also gave wise counsel to advocates for diabetes research saying that it is not productive to attempt to pit one disease against another but rather we should strive to promote more biomedical research across the board.

Congressman Kennedy provided a number of statistics about the physical and financial impact of diabetes on the 16 million Americans who have it. Kennedy said a new case is diagnosed every 40 seconds and that the U.S. health care expenditures on people with diabetes are $130 billion dollars per year. He made a very strong case for the importance of everyone concerned to let his or her congressperson know how they feel and what they would like their government to do for them. A important issue, he said, needs to be reinforced by numbers.

The session ended with two very excellent presentations by research physicians who are on the cutting edge of biomedical solutions to this disease. Gordon Weir, MD, of the Joslin Diabetes Center in Boston spoke about islet cell transplants. By replacing the islets of Langerhans which contain the insulin secreting beta cells it is hoped to restore this function and thus cure people with diabetes. Although great advances have been made in this research, the stumbling block still remains the individual's immune system which rejects anything foreign to the body.

Graeme Bell, MD, from the University of Chicago's Howard Hughes Medical Laboratory spoke about cell biology, another promising avenue of research. In his presentation he noted that we know that diabetes runs in families and that certain racial and ethnic groups are more prone to developing diabetes than the general population. In addition, if one person of a pair of identical twins develops diabetes often the other one will also. Obviously, there is a strong genetic component to the disease. To be able to discover and alter the genes which causes diabetes would be to cure the disease perhaps even before its onset, he added.

It is always exciting to hear updated news of the progress being made in diabetes research and particularly important to bring this information to those whose help we need to continue the funding of this work. Almost every one of the congressional speakers identified a person within his family who had diabetes. I thought it interesting to note that no matter how much effort we make to educate our lawmakers to the needs of people with diabetes. Nothing is quite as effective as when they have someone they love who is actually living with diabetes.

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May 1, 1998

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