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Juvenile Diabetes: Examining the Personal Toll on Families, Financial Costs to the Federal Health Care System, and Research Progress Toward a Cure

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Juvenile Diabetes: Examining the Personal Toll on Families, Financial Costs to the Federal Health Care System, and Research Progress Toward a Cure S. Hrg. 108–151 JUVENILE DIABETES: EXAMINING THE PERSONAL TOLL ON FAMILIES, FINANCIAL COSTS TO THE FEDERAL HEALTH CARE SYSTEM, AND RESEARCH PROGRESS TOWARD A CURE HEARING BEFORE THE COMMITTEE ON GOVERNMENTAL AFFAIRS UNITED STATES SENATE ONE HUNDRED EIGHTH CONGRESS FIRST SESSION JUNE 24, 2003 Printed for the use of the Committee on Governmental Affairs ( U.S. GOVERNMENT PRINTING OFFICE 88–931 PDF WASHINGTON : 2003 For sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800 Fax: (202) 512–2250 Mail: Stop SSOP, Washington, DC 20402–0001 VerDate 0ct 09 2002 13:17 Oct 29, 2003 Jkt 088991 PO 00000 Frm 00001 Fmt 5011 Sfmt 5011 C:\DOCS\88931.TXT SAFFAIRS PsN: PHOGAN COMMITTEE ON GOVERNMENTAL AFFAIRS SUSAN M. COLLINS, Maine, Chairman TED STEVENS, Alaska JOSEPH I. LIEBERMAN, Connecticut GEORGE V. VOINOVICH, Ohio CARL LEVIN, Michigan NORM COLEMAN, Minnesota DANIEL K. AKAKA, Hawaii ARLEN SPECTER, Pennsylvania RICHARD J. DURBIN, Illinois ROBERT F. BENNETT, Utah THOMAS R. CARPER, Delaware PETER G. FITZGERALD, Illinois MARK DAYTON, Minnesota JOHN E. SUNUNU, New Hampshire FRANK LAUTENBERG, New Jersey RICHARD C. SHELBY, Alabama MARK PRYOR, Arkansas MICHAEL D. BOPP, Staff Director and Counsel PRISCILLA HOBSON HANLEY, Professional Staff Member JOYCE A. RECHTSCHAFFEN, Minority Staff Director and Counsel JASON M. YANUSSI, Minority Professional Staff Member AMY B. NEWHOUSE, Chief Clerk (II) VerDate 0ct 09 2002 13:17 Oct 29, 2003 Jkt 088991 PO 00000 Frm 00002 Fmt 5904 Sfmt 5904 C:\DOCS\88931.TXT SAFFAIRS PsN: PHOGAN C O N T E N T S Opening statements: Page Senator Collins ................................................................................................. 1 Senator Pryor .................................................................................................... 3 Senator Lautenberg .......................................................................................... 4 Senator Bennett ................................................................................................ 5 Senator Specter ................................................................................................. 13 Senator Durbin ................................................................................................. 13 Senator Coleman .............................................................................................. 24 Senator Fitzgerald ............................................................................................ 25 Prepared statement: Senator Lieberman ........................................................................................... 41 WITNESSES TUESDAY, JUNE 24, 2003 Hon. E. Benjamin Nelson, a U.S. Senator from the State of Nebraska .............. 6 Mary Tyler Moore, International Chairman, Juvenile Diabetes Research Foundation (JDRF) .............................................................................................. 7 Katie Halasz, Delegate, age 16, JDRF Children’s Congress, Wells, Maine ........ 17 Colleen Rea, on behalf of her son, Dylan Rea, Delegate, age 4, JDRF Chil- dren’s Congress, Stamford, Connecticut ............................................................. 18 Sophia Cygnarowicz, Delegate, age 7, JDRF Children’s Congress, Columbia, Illinois ................................................................................................................... 19 Eric Bonness, Delegate, age 18, JDRF Children’s Congress, Omaha, Ne- braska .................................................................................................................... 20 Alex Bonness, Delegate, age 15, JDRF Children’s Congress, Omaha, Ne- braska .................................................................................................................... 21 LaNiece Evans-Scott, Delegate, age 10, JDRF Children’s Congress, Backlick, Ohio ....................................................................................................................... 22 Allen M. Spiegel, M.D., Director, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health ......................................... 28 Bernhard J. Hering, M.D., Associate Professor of Surgery, Director of Islet Transplantation, University of Minnesota, Minneapolis, MN .......................... 30 Anne Seidel, Islet Cell Transplant Recipient, Dallas, Texas ............................... 33 ALPHABETICAL LIST OF WITNESSES Bonness, Alex: Testimony .......................................................................................................... 21 Prepared statement .......................................................................................... 56 Bonness, Eric: Testimony .......................................................................................................... 20 Prepared statement .......................................................................................... 54 Cygnarowicz, Sophia: Testimony .......................................................................................................... 19 Prepared statement .......................................................................................... 52 Evans-Scott, LaNiece: Testimony .......................................................................................................... 22 Prepared statement .......................................................................................... 58 Halasz, Katie: Testimony .......................................................................................................... 17 Prepared statement .......................................................................................... 48 (III) VerDate 0ct 09 2002 13:17 Oct 29, 2003 Jkt 088991 PO 00000 Frm 00003 Fmt 5904 Sfmt 5904 C:\DOCS\88931.TXT SAFFAIRS PsN: PHOGAN IV Page Hering, Bernhard J., M.D.: Testimony .......................................................................................................... 30 Prepared statement .......................................................................................... 66 Moore, Mary Tyler: Testimony .......................................................................................................... 7 Prepared statement .......................................................................................... 42 Nelson, Hon. E. Benjamin: Testimony .......................................................................................................... 6 Rea, Colleen: Testimony .......................................................................................................... 18 Prepared statement .......................................................................................... 50 Seidel, Anne: Testimony .......................................................................................................... 33 Prepared statement .......................................................................................... 77 Spiegel, Allen M., M.D.: Testimony .......................................................................................................... 28 Prepared statement .......................................................................................... 60 APPENDIX Prepared statement from Alessio Fasano, M.D., Director, Center for Celiac Research, University of Maryland, Karoly Horvath, M.D./Ph.D., Co-Medical Director Center for Celiac Research, University of Maryland, Carlo Catassi, M.D., M.P.H., Co-Medical Director Center for Celiac Research, University of Maryland, Stefano Guandalini, M.D., Director, Celiac Disease Program, University of Chicago, and Peter H.R. Green, M.D., Director, Celiac Disease Center, Columbia University with an attachment ............................................ 79 VerDate 0ct 09 2002 13:17 Oct 29, 2003 Jkt 088991 PO 00000 Frm 00004 Fmt 5904 Sfmt 5904 C:\DOCS\88931.TXT SAFFAIRS PsN: PHOGAN JUVENILE DIABETES: EXAMINING THE PER- SONAL TOLL ON FAMILIES, FINANCIAL COSTS TO THE FEDERAL HEALTH CARE SYSTEM, AND RESEARCH PROGRESS TO- WARD A CURE TUESDAY, JUNE 24, 2003 U.S. SENATE, COMMITTEE ON GOVERNMENTAL AFFAIRS, Washington, DC. The Committee met, pursuant to notice, at 10:05 a.m., in room SH–216, Hart Senate Office Building, Hon. Susan M. Collins, Chairman of the Committee, presiding. Present: Senators Collins, Coleman, Specter, Bennett, Fitzgerald, Durbin, Lautenberg, and Pryor. Also Present: Senator Nelson. OPENING STATEMENT OF CHAIRMAN COLLINS Chairman COLLINS. The Committee will come to order. Good morning. Good morning particularly to all the children who have joined us from around the country today. We are so glad to have you here. As one of the co-Chairs of the Juvenile Diabetes Research Foun- dation’s 2003 Children’s Congress, I am very pleased this morning to hold this hearing to examine the devastating impact that juve- nile diabetes has had on American children and their families. In addition to hearing about the personal toll that this disease im- poses, we will also take a look at the tremendous economic costs to our Federal health programs of caring for people with diabetes. And, finally, we will discuss the promising breakthroughs in juve- nile diabetes research that holds such hope for a cure. Particularly, we will examine pancreatic islet cell transplantation. The work that I have done in the Senate on behalf of the 17 mil- lion Americans with diabetes has been truly rewarding. It has been a privilege to work with the families, with
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