Posted by MAR on January 11, 1998 at 18:09:49:
In Reply to: LETTERS FOR D.C. XENO FORUM posted by Therese Bujold on January 11, 1998 at 10:27:26:
OK, I'll throw my hat into the ring. . .
To Whom It May Concern:
I have been apprised of the January 21 to 22 conference on Xenotranspantation. Given the NIH stance that “islet
transplantation offers the best hope of a cure” for Type 1 diabetes, it is clearly imperative that you move forward on
this area of research and nonimmunosuppressed clinical trials. Per Joslin Diabetes Center researchers, Gordon and
Susan Weir, islet transplant research has been “badly neglected and steps need to be taken to remedy this”.
It is essential that you acknowledge islet xenotransplantation as an urgent priority. I was profoundly disheartened to
learn that diabetes research funds allocated by President Clinton’s Balanced Budget Act will be diverted to fund
more research on complications ($6 million for microvascualar complications and $2.5 million for neuropathy). Even
more outrageous is the NIH funding of $6 million for non-invasive glucose monitoring! Cygnus is raising $75 million
for non-invasive technology, Biocontrol Technology has sunk tens of millions of dollars into their monitor and
NASA is pursuing the same goal)! Yet research on “ the best hope for a cure”, islet transplantation, continues to
languish.
My fourteen-year-old daughter is sentenced to live the rest of her life as a Type 1 diabetic. Despite her having the
best of care at Joslin Diabetes Center and a parent who’s a nurse, she lives at wide ranges of high and low blood
glucose levels. She sticks herself up to nine times daily and readily “jolts” herself with humalog when needed. Still,
normoglycemia is unattainable. DCCT findings offer us no reassurance or consolation when, despite our most
vigilant efforts, euglycemia eludes my child. Compliance and lack of knowledge are not at issue here. Though she is
what treaters would call a “good”, “compliant” diabetic, her future is clouded with extraordinary risks of heart
disease, neuropathy, nephropathy, blindness and premature death. (She already tells her peers she will never have
children lest she endow them with a legacy of diabetes).
It’s been seventy years since Banting fought the scientific establishment to pursue his discovery of insulin. Since
that time we’ve had to settle for marginal improvements in treatment that offer marginal hope of a healthy future. I
am not comforted to know that there is great interest in preventing and curing diabetes at all levels of government.
The Department of Health and Human Services’ expenditure of $1.5 billion on diabetes research in the next 5 years is
money down the drain if it produces esoteric conclusions that bring my child no closer to a healthy future. It is time
to accelerate pursuit of xenotransplantation research and clinical trials. I implore you to optimize NIH focus on
research for xenotransplantation, the most likely cure for Type 1 diabetes.