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Your article on discrimination written by Loring Spolter in the November/December issue of Diabetes Health was excellent. My own experience with discrimination has been devastating. In 1995, I was discriminated against by the state agency where I worked.
The state agency investigating and mediating discrimination was sympathetic to my complaints privately but sided with the charged state agency publicly. To make matters worse, I had to forgo my attorney's services when I ran out of money.
The state's employee union tried to intercede on my behalf but could not penetrate the wall of irresponsibility. Having filed charges according to protocol, the retaliation from my employer was severe. When my doctor helped me to obtain benefits under the Family Medical Leave Act because of the continuing escalation of stress induced hyperglycemia and hypertension, my employer demanded that I be examined by a psychiatrist of the state's choosing and put on "corrective action" following my return to work. At this point I resigned, and six months later the only other employee who had defended my actions was forced to resign. I then appealed to the federal agency that granted funds for the program in which I worked. Again, they were privately sympathetic but did nothing. My case is still pending at the Equal Employment Opportunity Commission.
I appealed for support from the local American Diabetes Association affiliate on behalf of myself and others who had been blatantly discriminated against in Utah by their employers. I had been involved both professionally and as a volunteer for the ADA for many years. They did nothing.
I then obtained employment with a private employer but have sinceresigned because I have developed coronary artery disease. The stress of this horrible ordeal is definitely a contributing factor.
I have had type I diabetes for 48 years and until now have enjoyed excellent health. The supreme irony is the employer who used its considerable power to harass me was the State Health Department and its Diabetes Control Program where I worked as a community education specialist.
Loring N. Spolter, PA, responds:
Your experience demonstrates the importance of hiring an attorney who is experienced in handling employment discrimination matters.
As was the case here, job bias often involves violations of multiple laws. Employees of local, state or federal agencies may typically bring disability discrimination claims under the Federal Rehabilitation Act. The Equal Employment Opportunity Commission accepts Americans with Disabilities Act complaints. The U.S. Department of Labor accepts Family and Medical Leave Act grievances. Individual governmental agencies can't accept cases involving laws overseen by other agencies.
Swamped with discrimination complaints, the government rarely takes action against employers. Private attorneys can and do file lawsuits on behalf of their clients, and obtain evidence by compelling production of documents and deposing supervisors and coworkers, as well as bring cases to trial.
"A Breath of Fresh Air"
Thanks for finding me! I never imagined I could get excited about reading a publication on diabetes treatment, but your liberating, complimentary issue did excite me.
Because I have no medical insurance, I manage my type II diabetes using a combination of exercise, blood screening "specials," sales on testing strips, and a walk-in clinic where a wonderful, dedicated doctor interprets test results and prescribes medications and tests (for which I shop around for the best prices).
So it was like a breath of fresh air that on every page of Diabetes Health you offered something new and hopeful. I also found confirmation of my intuition and common sense: Glucontrol didn't work for one of your readers (I had just weaned myself off it and switched to glucophage); I also gained weight on the ADA diet and on Glucontrol, and recently started my own version of a low-carbohydrate diet. I was excited that you're not afraid to publish alternative treatments, new ideas and the use of meditation to reduce stress.
What I most enjoyed was the open-mindedness with which you present differing opinions. You also give us readers credit for being able to assimilate and understand what might work best for us. Now, even without insurance, I feel as though I am no longer alone and finally have access to my own medical team!
"Nothing Ventured, Nothing Gained"
Diabetes Health has received a great deal of letters in response to Scott King's My Own Injection column in the November/ December issue-"What Would You Do with $300 Million?" After visiting the NIH Scott came away frustrated that no substantial results had come from the 300 million dollars of taxpayers' money spent on research last year. Clearly the way our money is spent on searching for a diabetes cure has tapped a raw nerve in the diabetes community. It was inspiring to hear from so many of you who are taking an active role in the way our money is spent. Here are just a few of the letters that we received.
Bravo! Your editorial said a lot but didn't go far enough. Ask your readers to write letters to their representatives and senators in Washington, D.C. with a copy of your editorial column(Scott King's November/December, My Own Injection , "What Would You Do With 300 Million?"). My husband and I were prompted to write our congressman after reading your column. A copy of our letter is attached.
I have been angry about this for a long time. In my lifetime I had hoped to see a cure, but time is running out for me. To beat Russia we went to outer space and back in short order. At the time that seemed an impossible feat. If the medical community really wanted to find a cure for diabetes, I believe it could be done. We diabetics, as a group, need to become more aggressive. (Following is a copy of the letter that the Wenger's sent to their congressman.)
Dear Congressman and Congresswoman,
I know you are very busy, but I would like to have you read this article that was published in a recent edition of Diabetes Health.
I was surprised to learn that our government gives $300 million to the National Institutes of Health each year for diabetes research. Where is this money going? Is it going for research to find a cure for diabetes, or just to fill some researcher's pocket, duplicating what has happened in the past?
My wife has been a very brittle diabetic for over 44 years. All she has heard during this time is "give us more money to find a cure." And all that comes out of us giving more money is more research. This article (Scott King's) verifies it's business as usual in Washington, D.C. with the NIH telling us things that we've already known for years.
The government has spent billions on AIDS research to find a cure. This disease has been around only a few years. Diabetes has been around for decades, and no major progress has been made since the discovery of insulin in 1922. My wife and I have come to the conclusion that the researchers aren't looking for a cure, as it would put an end to all of their money.
Why should the drug companies be interested in finding a cure? They only need to develop products for the management of diabetes, and produce huge profits for themselves. Considering the large number of diabetics in this country, and the complications diabetes causes, the government could save billions on Medicare and Medicaid if a cure could be found.
I believe it is about time a congressional investigation be made of all the programs that receive our tax money-especially when they claim it is for research. They should make some accountable progress within x number of years, or the grant will be suspended.
The JDF responds:
On behalf of the Juvenile Diabetes Foundation International (JDF), I would like to respond to Scott King's recent commentary, "What Would You Do with 300 Million?"(My Own Injection, November/December 1996). JDF is a not-for-profit voluntary health organization dedicated to finding a cure for diabetes and its complications, and to improving the lives of people with diabetes through the funding of peer-reviewed research.
While perhaps taking exception to some of Mr. King's characterizations of the diabetes-related research currently being conducted through the National Institutes of Health (NIH), we at JDF share his impatience with the rate of clinical progress for people with diabetes. Indeed progress has not been fast enough for those who suffer from this disease and its debilitating complications. It is, therefore, an appropriate time to raise questions about both public and private research efforts relating to diabetes. At JDF, we have in recent years re-doubled our efforts to affect the amount of funding for diabetes research as well as the focus of that research. Due at least in part to JDF's reinvigorated advocacy efforts, overall NIH funding increased by over $1.5 billion, or nearly 13 percent, over the past two years. This should result in a $15 million to $20 million increase for diabetes research at the NIH, bringing the total to roughly $325 million. Despite this relatively positive outcome, we are not nearly satisfied with this level of funding, given the fact that diabetes affects 16 million Americans and is our single most costly chronic disease.
JDF has long understood the importance of moving promising basic science concepts from the laboratory bench to our loved ones' bedside. Accordingly, JDF has entered into a partnership with the Department of Veterans Affairs focusing on diabetes-related clinical research, i.e., testing of new treatments in human trials. In addition, preliminary discussions are underway with other federal agencies to explore collaborations on research into perfecting a bio-mechanical pancreas which would integrate non-invasive glucose sensing and insulin delivery to achieve and maintain normal blood sugar levels without a finger stick or injections.
JDF also undertakes ongoing evaluation of its own research portfolio to determine if we are spending money as effectively as possible. Our purpose is to analyze those areas in which JDF can have the greatest impact and those areas of greatest interest to the diabetes community.
JDF looks forward to working with others in the diabetes community to improve the lives of our friends and loved ones, and ultimately, to ridding the world of this insidious disease.
James Mulvhill, DMD
President and CEO
Juvenile Diabetes Foundation
I just finished reading your column, My Own Injection , in the November/December 1996 issue. I agree 100 percent with what you had to say about the National Institutes of Health. I was thinking as I read the article that there should be some way that diabetics, such as myself (17-year-old with type I diabetes), could do something to change this deplorable situation.
As you probably know, the American Diabetes Association has people, such as myself, who are called "Delegates for Diabetes." We write letters and make calls in an attempt to help diabetes issues at the state and federal level.
What can we do to get the NIH to properly use the money they are allotted? If we had current information and knew whom to contact perhaps we could make a difference. Nothing ventured nothing gained. If we sit back and do nothing things will remain the same. With the new monthly formats, starting the first of the year, you could disseminate information that we could act upon in a timely manner.
We need to mobilize the diabetic community now. We need to show the people who control our money that we care.
Gary R. Pieper
Diabetes Health is currently working on a series of articles with more in-depth information on the money being spent by the NIH for diabetes research.