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Diabetes Research Working Group
 
Meeting of the Congressionally-Directed Diabetes Research Working Group (DRWG)
 
Natcher Building
National Institutes of Health (NIH) Campus
Bethesda, Maryland
 
April 29, 1998
 
Report by
Alastair T. Gordon (The Islet Foundation)
and
Robin A. Harrison (Diabetes Cure NOW!)

Table of Contents
Disclaimer

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.


Going for the Jugular...

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 DRWG Meeting

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:

Your authors participated in the Type 1 Diabetes Subgroup.
 
Dr. Kahn threw the following challenge to each of the subgroups: If you were sitting in this room in 2010, what you you want to say was accomplished in the past 10 years? What resources do you need in order to realize those accomplishments? Which of your goals are achievable in the next 3 to 5 years? What issues cut across multiple NIH divisions and disciplines? Don't just talk to the experts -- ask who else can help the process. Think outside the box and take some risks.


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
 
Any research supported by NIH that was directly focused on a cure would therefore be a subset of the 4.7 % shown for Type 1 Diabetes Therapy.


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:

If there is any research in the 1998 priority list that goes for the jugular, it would be found under Cellular Therapy. The fact that cellular therapy received top billing is encouraging. All the other activities are based on the continued survival of diabetes, but some may yield information relevant to prevention.

Type 1 Diabetes Subgroup
 
The Type 1 Diabetes Subgroup meeting was a productive, and occasionally impassioned, affair. The group was lead by Dr. Hugh McDevitt (Professor of Microbiology, Immunology and Medicine at Stanford University) with a heterogeneous list of participants. In pursuing the mandate set out by Dr. Kahn, the subgroup provided the following statement of goals for research in type 1 diabetes through the year 2010:
  1. To understand and prevent autoimmune diabetes (IDDM), both before onset and after transplantation
  2. To develop methods to replace beta cell function lost to autoimmune diabetes (IDDM)
Goal 1: To understand and prevent autoimmune diabetes (IDDM), both before onset and after transplantation Goal 2: To develop methods to replace beta cell function lost to autoimmune diabetes (IDDM) * These items were given the status of Extraordinary Opportunities.

Some interesting discussions that took place in the Type 1 Diabetes Subgroup included:


DRWG Participants
 
 
Chairman of Diabetes Research Working Group
C. Ronald Kahn M.D.
Director, Elliott P. Joslin Research Laboratory
Joslin Diabetes Center
Professor, Harvard Medical School
 
NIH Members of Diabetes Research Working Group
Varmus, Harold E., M.D. 
Director, National Institutes of Health 
NIH
Hodes, Richard J., M.D. 
Director, National Institute of Aging 
NIA, NIH
Gorden, Phillip, M.D. 
Director, National Institute of Diabetes and Digestive and Kidney Diseases 
NIDDK, NIH
Kupfer, Carl, M.D. 
Director, National Eye Institute 
NEI, NIH
Alexander, Duane F., M.D. 
Director, National Institute of Child Health and Human Development 
NICHHD, NIH
Lenfant, Claude, M.D. 
Director, National Heart, Lung, and Blood Institute 
NHLBI, NIH
Fauci, Anthony S., M.D. 
Director, National Institute of Allergy and Infectious Diseases 
NIAID, NIH
Penn, Audrey, M.D. 
Acting Director, National Institute of Neurological Disorders and Stroke 
NINDS, NIH
Cassman, Marvin, Ph.D. 
Director, National Institute of General Medical Sciences 
NIGMS, NIH
Slavkin, Harold C., D.D. S. 
Director, National Institute of Dental Research 
NIDR, NIH
Collins, Francis S., M.D. 
Director, National Human Genome Research Institute 
NHGRI, NIH
Vaitukaitis, Judith L., M.D. 
Director, National Center for Research Resources 
NCRR, NIH
Blackshear, Perry, M.D. 
Clinical Director, National Institute of Environmental Sciences 
NIES, NIH
Notkins, Abner, M.D. 
Principle Investigator, Infection and Immunity Branch 
NIDR (National Institute of Dental Research), NIH 
NIH Support Staff for Diabetes Research Working Group
Eastman, Richard, M.D. 
Director, Division of Diabetes 
NIDDK, NIH
Harmon, Joan T., Ph.D. 
Chief, Diabetes Research Section 
NIDDK, NIH
Farishian, Richard, Ph.D. 
Deputy Director 
Office of Scientific Program and Policy Analysis 
NIDDK, NIH
Laurence, L. Earl 
Deputy Director 
NIDDK, NIH
Feld, Carol 
Associate Director for Office of Scientific Program and Policy Analysis 
NIDDK, NIH
Fradkin, Judith, M.D. 
Chief, Diabetes Programs Branch 
NIDDK, NIH
Margolis, Ronald, Ph.D. 
Chief, Endocrinology and Metabolic Diseases Programs Branch 
NIDDK, NIH
Singer, Elizabeth H. 
Director of Ofice of Scientific and Health Information 
NIDDK, NIH
Non-NIH Members of Diabetes Research Working Group
Caro, Jose, M.D. 
Vice President, Endocrine Research and Clinical Investigation 
Lilly Research Corporate Center 
Eli Lilly and Company
Melton, Douglas, Ph.D. 
Professor of Molecular and Cellular Biology 
Harvard University
Cox, Nancy, Ph.D. 
Assistant Professor 
Department of Medicine 
University of Chicago
Newgard, Christopher B., Ph.D. 
Professor 
Departments of Biochemistry and Internal Medicine 
University of Texas SW Medical Center
Ducat, Lee 
President, National Disease Research Interchange 
Philadelphia, PA 19103 
Founder of JDF
Porte, Daniel, Jr., M.D. 
Professor of Medicine 
Veteran Medical Center Research 
 
Dugan, Joyce C
Principal Chief 
Eastern Band of Cherokee Indians
Smith, Stephen 
Chairman, Government Relations Committee 
American Diabetes Association
Frank, Robert N., M.D. 
Professor Ophthalmology, Anatomy and Cel1 Biology 
Kresge Eye Institute 
Wayne State University School of Medicine 
Spitzer, Emily 
Chair of Research 
Juvenile Diabetes Foundation International
Gavin, James R., III, M.D., Ph.D. 
Senior Scientific Officer 
Howard Hughes Medical Institute
Stern, Michael P., M.D. 
Chief, Division of Clinical Epidemiology 
University of Texas Health Science Center at San Antonio
Hsueh, Willa Ann, M.D. 
Chief, Diabetes, Hypertension and Nutrition 
University of California, Los Angeles
Wing, Rena, Ph.D. 
Professor of Psychiatry, Physiology and Epidemiology 
University of Pittsburgh School of Medicine
McDevitt, Hugh O., M.D. 
Professor, Microbiology, Immunology and Medicine 
Stanford University
 
Type 1 Diabetes Research Priorities Subgroup
Subgroup Members at Priority-Setting Breakout Session
McDevitt, Hugh O., M.D. - Convener 
Professor, Microbiology, Immunology and Medicine 
Stanford University 
Newgard, Christopher B., Ph.D. 
Professor, Departments of Biochemistry & Internal Medicine 
University of Texas SW Medical Center 
Spitzer, Emily 
Chair of Research 
Juvenile Diabetes Foundation International 
Notkins, Abner, M.D. 
Principle Investigator, Infection and Immunity Branch 
National Institute of Dental Research, NIH 
Melton, Douglas, Ph.D. 
Professor of Molecular and Cellular Biology 
Harvard University 
 
Other Subgroup Attendees at Priority-Setting Breakout Session
Farishian, Richard, Ph.D. 
Deputy Director, Office of Scientific Program and Policy Analysis 
NIDDK, NIH
Harmon, Joan T., Ph.D. 
Chief, Diabetes Research Section 
NIDDK, NIH
Dr. Catherine Cowie 
Diabetes Clinical Trials Program Director 
NIDDK, NIH
Elaine S. Collier, M.D. 
Chief, Autoimmunity Section 
NIAID, NIH
Fradkin, Judith, M.D. 
Chief, Diabetes Programs Branch 
NIDDK, NIH
Judith Randolph 
Journalist
Gordon, Alastair T. 
President 
The Islet Foundation
Harrison, Robin A. 
President 
Diabetes Cure NOW!
Goldstein, Robert A., M.D., Ph.D. 
Vice President of Research 
Juvenile Diabetes Foundation International 
Young, Elaine, Ph.D. 
Associate National Scientific Program Manager 
Juvenile Diabetes Foundation International 
Diabetes Research Working Group Ad Hoc Consultants
Brownlee, Michael A., M.D. 
Saltz Professor of Diabetes Research 
Albert Einstein College of Medicine
Sima, Anders A.F., M.D., Ph.D. 
Department of Pathology 
Wayne State University School of Medicine
Polonsky, Kenneth S., M.D. 
Louis Block Professor of Medicine 
The University of Chicago
King, George L., M.D. 
Clinical Diabetologist 
Joslin Diabetes Center
Concannon, Patrick, Ph.D. 
Member Virginia Mason Research Center 
University of Washington
Metzger, Boyd E., M.D. 
Professor of Medicine, Division of Endocrinology, 
Northwestern University
Olefsky, Jerrold M., M.D. 
Department of Medicine 
University of California, San Diego
Mauer, Michael, M.D. 
Department of Pediatrics 
University of Minnesota School of Medicine
Buchanan, Thomas, M.D. 
General Hospital 
Los Angeles Medical School
Kitzmiller, John, M.D. 
Perinatal Associates 
Good Samaritan Hospital
Coustan, Donald, M.D. 
Chief, Obstetrics and Gynecology Department 
Women and Infant Hospital, Prividence, RI
Reece, E. Albert, M.D. 
Professor and Chairman, Department of OB/GYN 
Temple University School of Medicine
Pessin, Jeffrey E., Ph.D. 
Professor, Department of Physiology and Biophysics 
University of Iowa
Gershengorn, Marvin C., M.D. 
Division Head, Division of Molecular Medicine 
Cornell University Medical College
Salans, Lester B., M.D. 
Consultant 
LBS Advisors Inc., New York, NY
 
Institute of Medicine Committee on the NIH Research Priority-Setting Process
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