Maybe it's because she used to have diabetes that Deb Butterfield cares so much about a cure. Certainly she is devoting her life to getting the word out.
‘I thought I would be dead by now.’
Her Web site, Insulin-Free World On-Line, is a tool that she uses to communicate her involvement. An arm of the Insulin-Free World Foundation, which she heads without pay, the Web site tells how diabetes may be overcome. [Sadly, Deb closed her website in September 2005.]
The only diabetes cure yet discovered is a transplant. For some people, including Deb, a pancreas transplant has been tantamount to a cure, albeit one an imperfect one. For a few others, experimental islet cell transplants are being attempted, although with limited success so far.
One key barrier to transplant success is that the body's immune system rejects foreign tissue. So drugs to suppress rejection must be taken daily.
Taking these drugs instead of daily insulin injections is a trade off that Deb is glad to make. Diagnosed with diabetes at age 10, she has complications from her years on insulin.
Then in April 1993 she received a kidney/pancreas transplant. Although that transplant failed within three months, a second one in August 1994 succeeded.
"I am 38 and proud of it," Deb says when I apologetically asked how old she is. "I thought I would be dead by now."
Her Web site focuses on pancreas and islet cell transplants, developments in immunology, and genetic engineering related to diabetes. Complementing the site's tight focus is its great depth—more than three gigabytes of data.
Deb put up the site in June, shortly after the foundation got non-profit status. "One of the reasons why I started it is because of the silence out there about pancreas transplants," she explains.
The reason for the silence, she implies, is that pancreas transplants are expensive, costing between $80,000 to $90,000. While most major health insurance plans cover these operations, Medicare doesn't.
Even more than cost and coverage, however, Deb is worried about growing demand for pancreas transplants in the face of a limited supply. "That's the rub," she says.
Only about 5,000 donated pancreas organs become available each year. In 1996 about 1,200 people got pancreas transplants, according to the International Pancreas Transplant Registry. For people who had had transplants since 1994, 80 to 90 percent of the transplanted organs are still working, Deb says.
"I predict that the crunch is going to happen in the next two years," she says. "People are going to want pancreas transplants and will not be able to get them."
The potential demand for transplants is huge. Perhaps three million Americans take insulin, about one-third of them type 1 diabetics. It's also a legitimate treatment for some type 2 diabetics on insulin, Deb says.
Wouldn't islet cell transplants overcome the supply problem? In fact when islet cell transplants are perfected, the supply problem could worsen. While one pancreas provides one pancreas transplant, it now can take as many as seven pancreases for an islet cell transplant. An enormous number of islet cells is required, because only 25 percent take, she says.
In the long term, genetic engineering of islet cells could close the supply gap. Another way being studied is animal-to-human transplants. These so-called xenotransplants, using islets cells from pigs or other animals, hold promise, although it will be tough to satisfy the Food and Drug Administration on safety issues.
Another research area is transplanting islet cells encapsulated in a film that protects them from immune attack. Immunosuppression hopefully won't be required.
Islet cell transplants are the future. "A pancreas transplant can't be the solution for everyone," Deb says. "It's too invasive a technique for a child. Immunosuppression is certainly involved. Nobody who ever had a pancreas transplant would ever think about being diabetic again. But they wouldn't say that it is a perfect cure either."
In the short term, she doesn't want to encourage people to wait for islet cell transplants. She understands why the page on her site that gets the most hits is Articles about islet transplantation.
The American Diabetes Association originally published this article on its Web site as one of my “About the Internet” columns.
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