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Raise Consciousness, Avoid the Costs
I am closely affiliated with the NIH and often hear about policy problems. Those at the NIH are well aware that some diseases are getting a higher priority in funding due to questionable reasons. This push/pull is due to patient advocates and to political interventions. Congress decides where to spend the money.
I have three concerns. First, I felt you asked people to answer your questionnaire ("What do You Think?" page 3, May 1997) without considering that they don't have in-depth knowledge of funding why's and how's. Responses will be passionate and not fact-based, making your questionnaire results narrow.
Second, part of the problem with diabetes as a single disease is that it's really a cluster of metabolic problems and the U.S. population is trained to focus on type 1. But the huge numbers of aging baby boomers who are developing type 2 is really what's going to devastate the U.S. medical care system. They will cost the United States more money in healthcare than is being spent on research.
Type 2 diabetes kicks in later and requires a few more years to exact its toll. Also, the complications march on today even with good control of both types. Good control just slows the complications.
Finally, diabetes is a silent disease. On the outside, everything can look wonderful. We don't look disabled. We learn not to complain. Doctors talk about "mild diabetes" or just a touch of diabetes. Even they overlook the fact that diabetes is not a disease that you put on and take off like a coat.
Until attitudes change (perhaps via marches, more articles, etc.) diabetes will take its toll, and the wake-up call will already come too late for the baby boomers.
My 15-year-old sister has had diabetes for 10 years. Hope for a cure is the only thing that has kept my family going.
I believe there would be a cure if more people cared enough to take action. If everyone concerned about diabetes donated just minutes of their time to write their congressperson, the NIH, etc., I believe we'd see tremendous results.
As a chemistry student in college, I repeatedly asked my professors to allow me to carry out my research projects in the area of diabetes. After a tenacious semester of fighting, I spent two semesters separating and purifying bovine Langerhans islets.
I learned a great deal about the biochemistry of diabetes and how close we are to a cure. It made me want to get involved and do whatever I could to find that cure.
I've had diabetes for 50 years and have been receiving DIABETES HEALTH for a long time.
As a child, I experienced a lot of the problems that went along with diabetes. There were no blood glucose monitors or insulin pumps. I was in comas and near death several times. By the time I was 12, I thought there had to be something better than being hospitalized every month. So, I took the bull by the horns and learned what I needed to know from books.
I am still living a full life. I was married at 15, and my husband and I just celebrated our 41st wedding anniversary. I have had three children. Our eldest son died of a heart attack at 33. Our second child, a girl, was born with a heart defect and died at 10 months. Our third child, a girl, is healthy and well. Last month she was married.
I could write about a lot of things, but I just wanted people to know that living with diabetes can be done. I amaze myself a lot of the time with what I can cope with. You can too.
Fight For Your Life
I read something in Scott King's column ("What Do You Think?" May 1997) that really got to me. It was the fact that the AIDS activists are doing so much to fight AIDS and how much we can learn from their passion. I get a lot of inspiration from the AIDS fight and participate in an AIDS walk every year. I devour articles written by and about people either fighting AIDS or fighting for a cure, and I give money to AIDS organizations.
I often rant about diabetes being portrayed as a "minor" inconvenience. After years of ranting, the question that I have arrived at is: Why don't people fight when their lives are threatened? We don't and we haven't. The efforts made are not commensurate with the power and money the ADA and other organizations have.
We have no leader. Not one person with guts, persuasion, power, administrative skills and scientific knowledge is in charge. Yes, it would be wonderful to have a leader to push things. But we can all do things. We have to keep pressuring a research system which moves far too slow.
I think your newspaper is a good thing. I don't know another publication that is so brutally honest. Keep up the great work.
I'm writing to you to seek help in any form you might be able to provide.
I have a very special little boy in my life who was diagnosed with type 1 diabetes prior to age two. He is almost seven now and presently experiencing very difficult and uncontrolled diabetes. He's experiencing far too many low blood sugar readings and just as many high ones - lows in the 50s and 60s and highs from 300 to 500!
A local diabetes clinic sees him every four to six months for check ups and re-evaluations. We are currently having some difficulties with this clinic for several reasons and desperately need to find a new diabetic team to help us help him gain better control of his diabetes and a healthier life.
We are considering the Joslin Diabetes Center in Indianapolis, even though it's a two hour drive for us.
Right now there is no medical coverage for this child and all his supplies and medical costs are out-of-pocket.
Mrs. C. Sylvester
Editor's Reply - A diabetes educator in your area would be an invaluable resource for help and information. Call (800) Team Up4, (800) 832-6874 for a list of diabetes educators in your area.
Strength in Numbers
I am a diabetic and have had the disease for 55 years. Your articles ("What Do You Think ?," May 1997) and ("Show me the Money," April 1997) sparked my interest and concern. My friend and I are making inquiries to researchers and all we hear is the same old story. They're running out of funds.
We contacted Dr. Cochran at U.C. Davis. He has FDA approval for research on humans but like another researcher, Dr. Brownlee at Albert Einstein College of Medicine in New York, he also needs funds.
As Mary Tyler Moore said to Congress, "Our hope is research." But many questions are surfacing from diabetics. What are all these researchers doing?
America continues to conduct large scale, long-term studies on treatments that have already been used for years in other countries. In my opinion, major changes in our review boards and the FDA are long overdue.
As a diabetic, I can't just sit back and be resigned to the ultimate insidious complications of the disease. It's time for researchers and diabetics to take action!
A group I belong to, the Diabetes Society, is forming a new support group for adult type 1 diabetics. This group will not only work to support its members, but also plans to be a voice of advocacy for new diabetes treatments and the search for a cure. Additionally, we plan to investigate research studies and new treatments available in other countries for people with type 1. There is strength in numbers. Anyone in the Northern California area interested in joining to help us find a cure can call Lisa at the Diabetes Society of Solano County (707) 429-9645.
Aug 1, 1997
Diabetes Health is the essential resource for people living with diabetes- both newly diagnosed and experienced as well as the professionals who care for them. We provide balanced expert news and information on living healthfully with diabetes. Each issue includes cutting-edge editorial coverage of new products, research, treatment options, and meaningful lifestyle issues.