Let me start off with a big thank you to all of you. As a person with diabetes, I feel I have the best job in the world! An important goal for me is giving consumers of diabetes products and treatments a voice. That is why you will find your voices included in these pages.
I encourage our writers to find out how the hot issues of the day affect you, and to get your responses and suggestions. The American public spends over $95 billion on diabetes-related goods each year. Yet, despite spending all this money on products and treatments, I know that many of us still don’t get what we need. As consumers, we should have enough clout to be heard. So thank you again for supporting this magazine which gives you a voice.
Last month, we shared what users really think about syringe re-use. This month, we present the story of the recently recalled diabetes drug, Rezulin, and an article on how diabetes nonprofits are judged.
Rezulin, A Drug Released Prematurely?
When the new diabetes drug Rezulin was launched three years ago, there was much excitement. I was told by the company’s marketers that they had been given $75 million to advertise and market the drug during that first year. Much fanfare was made of the possibility that if type 2s took Rezulin, they might be taken off their insulin. Over 1 million prescriptions were eventually written for this drug.
For this month’s feature story, we interviewed a man who required a liver transplant after taking Rezulin. Sixty-three deaths have been blamed on Rezulin so far. I tried to resolve one main question: was the drug recalled because so many had died, or because two other new drugs have been approved to replace it? Until the day it was pulled, the Food and Drug Administration argued that the benefits of Rezulin outweighed its risks, even though people with diabetes were dying. Read this article and see what you think. Even if you never took this drug, there will be other new drugs rushed to the market that we might want to be wary of in the future.
Americans Donated Over $300 Million to Diabetes Nonprofits
After I had amassed a large stack of solicitations asking me for money to cure diabetes, we decided we should look into this.
One request came from National Diabetes Fund. I had never heard of them. In their appeal, they asked, “If you make just one gift each year to fight diabetes, please send us your money.” I am sure that their mailings are designed to get the money a person might have sent to the American Diabetes Association (ADA) or the Juvenile Diabetes Foundation (JDF).
In the small print they disclose that only 7 percent of the $3.7 million they had collected was spent on their purpose. Almost all the rest went to the cost of fundraising!
We also found that, because they are not a charity, your donation to them is not tax-deductible. In 1997, the Michigan attorney-general filed a notice for them to cease and desist fundraising in that state, which they did. The attorney general found that they had intentionally created the impression that they were a charity, when they were not. According to their 1995 IRS form 990, only $3,500 of the $2.6 million they raised was spent on grants which may have benefited medical research.
I guess anyone with a computer and some letterhead can stick out their hand and collect money these days-and then spend it on themselves!
The biggest fundraiser is the ADA. Their income (as shown on the chart on page 33) was $123 million for 1998. That year they spent $15.5 million on research awards and grants-13 percent of the total raised. They cite that 80 percent of every dollar (based on expenses) goes toward research and education. As you read our article, you will see that there is a big difference between income and expense, and the calculated percentages of program funding.
The second biggest diabetes nonprofit is the JDF. They raised $95 million, of which $47 million was spent on research. I think it is unfair to compare these organizations because their goals are so different. Besides raising money to cure diabetes, the ADA publishes the best diabetes research journals in the industry. The JDF has a much narrower focus.
I guess there is so much money to be had that more organizations are jumping into the diabetes fundraising game. The few nonprofits we looked at raised a combined $300 million in 1998 alone. Though this story is long, it will open your eyes to how nonprofits use their donated money.
A Whole Lot of Spending Going On
When I think about the $300 million per year the public gives directly to diabetes nonprofits and the additional $442 million per year in diabetes research that our tax dollars fund through the National Institutes of Health (NIH), I’m flabbergasted that we don’t have more to show for it. Several groups, including the NIH, take credit for the one truly helpful discovery – laser therapy that prevents blindness. But this was discovered though funds donated by the Lions Club! If someone could send me a list of anything significant that these billions of dollars (over the last several years) have bought us, I’ll eat my hat. If this burns you, you’re ready for the next piece.
Are You Burned Out?
We have included a quiz, on page 37, to see if diabetes is pushing you over the edge. I took the test and got a score of 17, meaning that I am “moderately distressed.” Like any test, it depends on how you answer. Every time I get a BG over 160, I feel a twinge of failure. So I rated this question (#3) as a serious problem. But, considering my last HbA1c was 6.8%, I’m not failing at all. “Diabetes Burnout” is filled with worksheets and information that can show you where you stand in relation to others. The book’s author, William Polonsky PhD, CDE, is one of a handful of counselors who specialize in diabetes. He knows his stuff!
Please be sure to let me know your thoughts on any of the topics presented in this issue. Also, you can call 800-488-8468 to request a free sample of this publication for a friend.