This report is not intended to be a comprehensive summary of all the material covered at the Diabetes Research Working Group (DRWG), April 29, 1998. Because our primary interest is in research leading to the cure and prevention of type 1 diabetes, sections relevant to that particular endeavor are emphasized, and some conclusions are drawn. Not covered in any significant detail are sections dealing with type 2 diabetes, microvascular complications, macrovascular complications, diabetes and pregnancy, and disease management.
The report was compiled from notes and recollections of the authors and discussions with other participants. However, there are likely errors and omissions that readers will observe. Please feel free to send an email detailing any such deficiencies, as the report can be easily amended.
As the DRWG is charged by congress with the task of setting the diabetes research priorities for the NIH through the year 2010, their direction and focus is very important to people with diabetes. I think we can conclude that, overall, the goals articulated at this meeting were positive. It was encouraging to see cell therapy receiving some of the attention and emphasis it deserves.
In speaking at length with a prominent researcher (who shall remain anonymous unless he wishes to be identified) about what drives the advance of research, he spoke of a pervasive behavior among researchers. This behavior may help explain the lack of progress in diabetes treatment over the past decades. He said that many researchers are comfortable nibbling at the edges of a chronic disease, but are hesitant to "go for the jugular". If we imagine diabetes as a deadly predatory creature -- the diasaurus rex, for want of a better name -- running amok through our lives, there is now a huge industry defending against the most immediate effects of this creature's rampages. The researchers and their sponsors have become so accustomed to the creature, that they will generally only takes swipes at its extremities, but are reluctant to risk an attack on it's well-defended jugular. Perhaps the time is ripe to support those researchers who are willing to attack the jugular of the diasaurus rex, and finally lay the monster to rest.
At the risk of stretching this metaphor to the breaking point, perhaps every research initiative should be measured against its potential to finally sever the jugular of diabetes. For over seventy-five years, we have used the same ineffective weapon to defend ourselves against the diasaurus rex. Our skills have improved marginally, but the creature always wins, and we always lose. While recognizing the importance of defending against the diasaurus as long as it lives among us, we must shift resources to those research initiatives that directly attack the jugular of this despicable creature, and to assure it never returns.
DRWG Background and Mandate
The concept for the Diabetes Research Working Group (DRWG) was
first introduced as a Bill (H.R. 1315) to the U.S. House of Representatives
in April, 1997 by Representatives George Nethercutt (WA) and Elizabeth
Furse (OR), both parents of children with type I diabetes. The essentials
of H.R. 1315 were condensed and rolled into the Health & Human Services
Appropriations Bill for 1998, which was signed into legislation by Congress
and President Clinton in the Fall of 1997. The goal of the Working Group
is “to develop a comprehensive plan for all NIH-funded diabetes research
efforts”, as well as recommending “future diabetes research initiatives
and directions.” This plan will be submitted to Congress by late August,
1998.
The Bill calls for the NIH Director to appoint a non-NIH member of the Working Group as its chairman (Dr. Ronald Kahn of the Joslin Diabetes Center). Members of the Working Group include high-level representatives from the NIH Institutes that have substantial diabetes research portfolios; leading diabetes researchers (not employees of the NIH); representatives from industry; and leaders of organizations that represent people with diabetes. It is unclear how and by whom the non-NIH members of the group were selected. The Director of the NIDDK (Phillip Gorden) and the Diabetes Mellitus Interagency Coordinating Committee will work with the DRWG in the development and implementation of the diabetes research plan.
On January 28, 1998, the first meeting of the DRWG was held. The three major agenda items included inventorying current assets and projects within NIH; reviewing the findings of the September workshop (Diabetes Mellitus: Challenges and Opportunities); and deciding how to develop the research plan for Congress. With selection of subgroup assignments by Working Group members, the framework was set for progression into the events of the April 29th meeting.
The schedule for future meetings this year is tentative at best, making
it difficult for non-Working Group members to keep properly informed of
precisely what will happen next, and when. Many DRWG members (including
most belonging to the Type I subgroup) plan to meet informally at the American
Diabetes Association’s Annual Scientific Sessions to be held June 13-16,
in Chicago, IL. Two more formal meetings of the DRWG will probably be in
held in Bethesda- one in early to mid-July, and one in September. There
was brief mention of the possibility of holding a “consumer input meeting,”
but to this author’s recollection, no concrete dates or locations were
offered or discussed. Representative Nethercutt joined the full
assembly towards the end of the evening, and urged the Working Group to
have their research plan ready for him by the end of July so that it may
receive attention for funding in the 1999 Appropriations Budget.
Our Representatives at DRWG
People with diabetes were represented at the DRWG in various ways. Conspicuous by its absence was direct representation of people with diabetes, people who have no agenda other than eradication and prevention of the disease, and who have no vested interest in any research initiative, other than the ones most likely to cure and prevent diabetes. Despite all the positive developments at the DRWG, there was no apparent effort to inform consumers of this meeting. As a result, representation was almost exclusively through the NIH, traditional major foundations, academic researchers, and industry representatives.
People from the Juvenile Diabetes Foundation (JDF) were out in force, including Dr. S. Robert Levine (Director of Government Relations), Dr. Robert Goldstein (VP Research), Emily Spitzer (Chair of Research), Dr. Elaine Young (Associate National Scientific Program manager), Bill Schmidt (Director of Public Affairs), and Larry Soler (Senior Legislative Counsel). Most of the JDF participants either have diabetes themselves or in their families, and so have a strong vested interest in assuring that the best research receives NIH support and that more funding dollars are provided. JDF has had a long history with the DRWG, actually originating the idea of a Working Group and working closely with Congressman Nethercutt's office in the development of legislation.
The American Diabetes Association (ADA) were also present, including Stephen Smith (Chairman, Government Relations Committee) and Michael Mawby (National Vice President for Advocacy & Editor of Diabetes Advocate Magazine). The ADA has lately been relentless in pushing for greater funding of diabetes research.
In addition, there were researchers who have diabetes personally or in their families including Dr. Michael Brownlee (Saltz Professor of Diabetes Research, Albert Einstein College of Medicine) and Dr. Douglas Melton (Professor of Molecular and Cellular Biology, Harvard University). Clearly, these researchers have motives that go beyond publishing and profit.
The meeting was held on the National Institutes of Health (NIH) campus, in the Natcher Building in Bethesda, Maryland. The number of participants was impressive, and the meeting started at 8:00 AM and finally broke up after 9:30 PM. The participants faced a marathon session, and most finished the event still standing.
The meeting was chaired by Dr. Ronald Kahn, Director of Research at the Joslin Diabetes Center, Harvard Medical School. Dr. Kahn was the driving force, and did a commendable job of maintaining the momentum and focus throughout a very long day. The DRWG seems to consist of NIH Members, NIH Support Staff, Non-NIH Members, and Ad Hoc Consultants.
The meeting started with a general session involving all participants. At about 11:00 AM, the participants broke into individual groups to deal with specific areas of diabetes. Before breaking into individual groups, Dr. Kahn directed each group to develop a set of research goals which it wants to accomplish by 2010. The subgroups were:
NIH Diabetes Research Portfolio
for 1997
Dr. Judith Fradkin, Chief, Diabetes Programs Branch, NIDDK provided an overview of how funds were allocated to various diabetes research initiatives in 1997. The distribution was as follows:
| Type 1 Diabetes
Pathogenesis/Autoimmunity/Genetics Therapy Prevention Epidemiology Viral and Environmental Type 2 Diabetes Microvascular Complications Macrovascular Complications Other Complications Obesity Basic Physiology of Glucose Homeostasis Resources |
17 %
6.3 % 4.7 % 2.9 % 2.6 % 0.5 % 19 % 13 % 9 % 3 % 12 % 17 % 10 % |
| Total | $318.5 million |
NIH Diabetes Research Portfolio
for 1998
Dr. Joan Harmon, Chief of the Diabetes Research Section at NIDDK, presented the list of funding priorities for the NIH for 1998. Dr. Harmon seems dedicated to assuring that achievable and clinically-relevant research receives top billing under the new NIDDK funding strategy, as opposed to the traditional pursuit of basic science. The list presented was as follows:
Some interesting discussions that took place in the Type 1 Diabetes Subgroup included: