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Taking Your Diabetes Seriously

Nov 1, 1992

In his editorial in the Summer '92 edition, Scott King, prompted by my article "Islet Cell Research-Putting the Cart Before the Horse?," stated that he was pushing forward with the confidence that he wouldn't lose his life to diabetes. I fervently wish that to be so. It is a wish that I have for all who must live with diabetes, and we are working toward that end.

However, we do ourselves no favor when we hide our heads in the sand and pretend that threats of death or complications from diabetes do not exist. Instead, we could greatly advance our cause, if only we would roll up our sleeves, meet the old diabetes dragon in his lair and wrestle him to the ground. Let me explain why.

All of us know that AIDS is a terrible disease. We grieve for those who have it, and support every effort to find its cure. AIDS was, in fact, the only disease to be poignantly described from the podium of both political conventions this year. There was a plea to eradicate the disease, and to help, and to understand those who suffer from it. Not a word of dissent was heard.

Without detracting from the serious and important cause of finding a cure for AIDS, let's consider some facts that will help to put the cause of diabetes into a better perspective (using the most recent annual figures available for comparison).

AIDS is a deadly killer. In America, 21,000 people died of AIDS in 1989, a shocking number. But in the same year, more than seven times as many people, 157,265, died of diabetes.

A frightening aspect of AIDS is that it is increasing at such an alarming rate. AIDS deaths increased from 16,000 to 21,000, between '88 and '89, an increase of 5,000 people in just one year. Yet diabetes is also increasing at 6% per year, and unlike the problem of AIDS, there is no public education program which can slow the relentless onslaught of diabetes.

Last year the federal government spent at least fifteen times as much money on AIDS research as it spent on diabetes research: $4.4 billion,($4,400,000,000) was spent on AIDS research and $260 million ($260,000,000) was spent on diabetes research. This money spent on research amounts to $18.57 for each person that has diabetes and $17,600.00 for each person who has AIDS.

That figure becomes even more significant when you realize that 250,000 Americans have AIDS, and that nearly 56 times as many, some 14 million Americans, have diabetes.

The point to be made is that people who are fighting the scourge of AIDS have clearly identified their enemy. With a will to win, they have launched an all out war. They are not about to let the public forget the grim realities of suffering caused by their disease. They appear in print and on the broadcast media, and they march on Washington.

They display their magnificent quilt. They lobby the federal government, and assure that a cure for AIDS is a foremost political issue.

By contrast, those people whose concern is diabetes tend to take a more laissez faire attitude. Diabetes is easy. In the words of an old slogan, "You can live a perfectly normal life with diabetes." They are willing for the general public to understand diabetes as a problem a little insulin will fix, juvenile diabetes as something the kids will probably outgrow, and besides, "What did you expect if you were going to eat so much sugar?" It's not a very fair image, and people who work so hard to manage their diabetes deserve better.

At the risk of bringing some unnecessary pain to the fine and gentle people who live with diabetes, it seems important to sound the alarm. The disease is serious. Thousands of people are dying from it. There are 12,000 people who have diabetes who will go blind this year, and 54,000 who will require amputations. Thousands more will suffer other devastating complications. Unfortunately, only those who are directly involved with diabetes can bring about a change for the better. We need to work with a stronger conviction in our own behalf.

In time consumption, diabetes is almost like having a second job. There is testing and injecting and balancing diets, getting enough exercise, examining your feet, etc. It's no wonder that people who take care of diabetes don't feel they have the time or energy to take on a crusade that will lead to its cure. On the other hand, you can be sure that people who don't have diabetes are not going to wake up some morning and decide that it's a problem that they want to resolve.

Shouldn't we decide that we're ready to take action? Not only is diabetes wasting our time, it's wasting our money and our energy, and yes, it's wasting our lives. Not much is happening. We think that progress is being made when we hear that some laboratory mouse lived through the night. Is that enough?

Perhaps we should be considering the really major questions instead. Diabetes is the world's oldest known disease. It was first described nearly 5,000 years ago. Yet we still don't know what causes it, or how to prevent it, or how to cure it, or even how to prevent its many complications.

People who have diabetes have been pretty lucky in that they don't look diabetic and therefore they don't have to explain their problem to others. That was a fortunate fact when doing so might have lost them their jobs. Fortunately, with the new Americans with Disabilities Act, that's no longer a worry.

People who have diabetes have been asked, for decades, to raise money for diabetes research. Yet they don't have anything to say about how it gets spent. They're just told the research is for a "cure," and much too complicated for them to even understand, let alone have input on decisions.

That's not true. If you hear that the research being done is some clever new way to blow insulin up your nose or through your skin, just say, "No thank you. I'd rather you spent my money looking for a cure for my disease." Do the same if you hear of research on something wonderful and "implantable." That means you have to be cut open each year to see if the gadget is still working. And if you hear of a research project that has been going on for 20 years, costs many millions of dollars, and is still nowhere near a solution, ask for a review of priorities. Let's first spend our money on the research most likely to have a direct benefit for the patient...and soon!

In diabetes, we don't truly appreciate the power of our numbers. We could make a tremendous difference with just a tiny effort by each of us. Think what the impact would be if 14,000,000 people each wrote his or her congressman about the importance of funding diabetes research. We could let the government match our own funds. If each of us sent only one dollar, we could raise $14,000,000 without mounting the first charity bike ride. And if we each volunteered one hour per week to help the cause of diabetes, it would be like having a staff of 364,000 people working full time, for free. Doesn't that blow your mind?

So what would you do with all of your spare time and money if you didn't have diabetes? What would you worry about? And when shall we begin?

Categories: Diabetes, Insulin, Personal Stories

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