16 Million Strong

In May, I printed a survey in my column asking you how you felt about the direction of NIH spending on diabetes research. We have received an overwhelming response to the survey. My personal thanks to everyone who sent in a response.

I’d like to share with you the survey results and some of the responses we received – many of them heartfelt and many filled with frustration at the snail’s pace of diabetes research.

An overwhelming majority of you believe that the current diabetes research funding system needs to be reformed. One reader suggests that we go even further and reform the entire education system, “In the long run, the number of people qualified to do research is an even more stringent limit than funding and a lot more difficult to change. Changes need to start at the very basis of education and society. Yet public support for real changes in education is virtually nil.”

Many believe that diabetes education for the general public would make diabetes research a greater national priority. One concerned reader writes, “It seems that diabetes is not out in the public eye like cancer or AIDS … the public should be made aware of the complications, the enormous cost of controlling the disease, the problems with insurance coverage, etc.” Another reader writes, “I would like to see more public awareness of diabetes. There are still way too many misconceptions and prejudices in the work force.”

“Education is the key to controlling diabetes – we need more of it,” writes yet another reader.

Many of you had comments to make about the NIH as well. One reader writes, “Unfortunately, there has never been a cure for any major illness that has come out of the NIH. The salaries are too low for the scientists, and the researchers have no sense of urgency.” Another reader writes over the internet, “The NIH ought to be able to produce a yearly accounting of its expenditures along with a summary of the advances made.” Another adds, “I think a $300 million reward for a cure would generate a lot more progress than a $300 million grant.”

Additionally, the majority of you agree that the NIH should support the study of non-traditional or complimentary therapies. This, I believe, reflects the frustration we have all felt over ineffective drug treatments.

I was pleased to see that everyone surveyed was willing to march, write letters, distribute petitions or work the phones in order to increase diabetes’ exposure. Some readers expressed the need for more active political awareness when it comes to pinpointing what needs to be reformed. One reader writes “Just focusing on research reform will not bring us the cure we need. But educating ourselves and speaking out will force those in the research community and the government to hear our cries and to honor our requests for true research reform.”

Another reader writes of his frustration with the pace of current research, “We seem to have the technology to make artificial hearts, why not an artificial pancreas?”

I believe we could make diabetes a very visible presence in the media and in the eyes of the general public. Many of you are willing to volunteer time and money. One woman writes, “I’d help organize a march, since I live in D.C. The key is to make it fun. I mean we have to get celebrities, music and food in addition to literature and education.”

Readers also wrote in about topics not included in the survey, such as the use of aborted fetal tissue for diabetes research. One reader’s opinion was, “I think aborted fetal tissue should be used in diabetes research. Using it will save lives and there’s no way I would believe that it would cause an increase in abortions.” While another reader had the exact opposite view, “No research for a cure of diabetes should be conducted with fetal tissue of aborted babies – this I cannot and will not support.”

Many of you also wrote in voicing fears that the pharmaceutical companies are blocking any chances for a cure. One reader wrote, “I am concerned that the interests of the insulin test strip/meter companies may interfere with us trying to make substantial changes [because there is so much money involved]. We also know how slowly our government works. Perhaps we should consider starting our own research group to find a cure?”

I am positive that with a more focused and politically aware diabetes community, we could make enormous changes for the better. I believe one reader put it best, “We are 16 million strong. If we work together as a community we can achieve many goals – better treatment, political action and, yes, even a cure.”

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