The Devil We Know

“I’ve had diabetes for 35 years,” read one e-mail message to our Islet Service at “I only have retinopathy and mild neuropathy, but I am having trouble feeling lows [hypoglycemia]. I want a cure that doesn’t require anti-rejection drugs.”

In most cases of type 1 diabetes, the insulin-producing beta cells are destroyed by the person’s own immune system—what is called an autoimmune attack.

Today’s beta-cell replacement therapies to “cure” diabetes are dependent on the manipulation of the immune system. In the past, many believed that anti-rejection drugs were often worse than having diabetes.

But that may be changing.

Right now, there are human trials in process to replace long-term anti-rejection drugs with new ways to “re-educate” the immune system using only one or occasional doses of anti-rejection drugs. And we have reason to be optimistic that science will find a way to overcome the immune response to foreign tissue through genetic engineering, cell encapsulation or the regeneration of some type of the person’s own cells.

The Lesser of Two Evils

If that were the end of the story, some people with diabetes might choose to accept the risks of diabetes for a little longer. But it is not the full story; for people with type 1 there is another, more daunting immunological challenge: How can science thwart autoimmunity to prevent type 1 from recurring?

The good news is that there are ways to prevent autoimmune destruction. For the person waiting for a cure independent of anti-rejection drugs, however, here is the rub: Preventing autoimmunity requires drugs that block or alter the immune system.

So, even with advances in preventing the rejection of foreign “transplanted” tissue, the question remains: Which is worse, having diabetes or taking anti-rejection drugs?

Q: Whatever happened to the Edmonton Protocol? Is it dead in the water?

A: This is a great question because it illustrates the essence of the frustration many people have about how long it takes to find the cure.

The Edmonton protocol for islet transplantation, as with many of the great milestones before it, was just that. It was a milestone. It was not, nor was it intended to be, the cure to end all cures. It was no more of a final solution for all people with diabetes than is the latest computer chip the final stop for computers. It was an improvement over prior protocols and a giant’s shoulder on which other scientists can now stand.

Many of those who benefited from islet transplants using the Edmonton protocol, and who no longer suffer through potentially fatal hypoglycemic episodes multiple times per month, tell me that for them, the Edmonton Protocol represents life.

Deb Butterfield
Founding president, Insulin-Free World Foundation
Founding president Diabetes

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