Just My Type: Difference of Opinion
Difference of Opinion
In my little corner of Massachusetts, a town board and a town committee recently disagreed over the best course of action. The committee was charged with making a recommendation to the board, which it did; the board decided to go a different direction. The thing is, I believe both groups have people who are caring, hard-working and community-minded. — It’s really hard when there’s a fight but no clear villain.
That’s how I felt recently when I saw a Facebook post from the JDRF North Central CT/Western MA, our local chapter of the organization charged with finding a cure for type one diabetes. In their post, Not just a gadget, JDRF was encouraging people to rally against a New York Times article, Even Small Medical Advances Can Mean Big Jumps in Bills. In particular, JDRF objected to the term “gadget” The Times story used in referring to medical devices like insulin pumps.
I already had read the story before I saw JDRF’s post. I felt sick after reading it. I have long thought the idea of a cure for diabetes is not going to happen because pharmaceutical companies are making an obscene amount of money off of diabetics including the small percentage of those who are insulin-dependent type one patients like my daughter who suffer from an incurable, uncontrollable autoimmune disease. Having just switched to an insurance plan that, like many in this country, covers less and less with higher co-pays and deductibles, for the first time since my daughter was diagnosed I began to get very scared about my ability to keep my daughter healthy while not going broke.
What I was not, however, was mad at The New York Times. I’m a journalist, and I appreciate a well-researched article that was mostly accurate, despite a tough, clinical, emotional subject.
Then came the JDRF post and ensuing comments that blasted The Times. I got so annoyed that people’s anger seemed misplaced at The Times instead of the insurance and pharmaceutical companies that I broke my own policy against Facebook commenting and seconded a comment by a man who very nicely said what I was thinking about where our anger should be directed.
The thing is, just like the town board that did not go with the committee’s recommendations, JDRF is not a villain. While I don’t always agree with its methods (I wish more money went for a cure, not for the “next best thing”), I do believe that JDRF is run by hard-working people who care about people affected by this disease and want to make the world a better place for them. That’s why I continue to support fundraisers for them, including a really nice one in Stockbridge, MA, earlier this month that raised money through an archery tournament.
I didn’t, however, agree with JDRF’s decision to do what amounted to rabble-rousing in this case. As the public editor of The Times said in a blog following the uproar, “reaction became much more negative and accusatory after the advocacy groups emailed their members urging them to write to The Times, to light up Twitter and to otherwise respond negatively to the article. Research by my office backs this up; the tide turned from positive to negative in the comments on Monday afternoon. I’ve seen this happen before. Once contacted by an advocacy group, people who haven’t already formed an opinion about an article are very likely to read it through a particular lens — if they read it at all before reacting.”
I did agree, though, with that one woman from Boston commented on that blog: “Please count me as another Type 1 diabetic who appreciated this article deeply and finds myself confounded by the JRDF’s response. While I am infinitely grateful for the advances of modern medicine, not only insulin but fast-acting meters, syringes I don’t have to boil and reuse hundreds of times, and for those who prefer them, insulin pumps, I’ve found myself troubled often by the focus on maintenance as opposed to cure. … My takeaway from the article was not remotely that the author intended to dismiss or trivialize any of these advances but to expose how high the costs are, in many cases artificially. The attack on the story seems like an utterly disingenuous distraction from this main point. It’s an important story to tell and I was very glad to see it as opposed to yet another piece on some grand new advance like invaluable insulin. I don’t want to inhale my insulin. I want to find a way to make my pancreas work again.”
That’s all I want for my daughter. I’m glad there’s a JDRF and I’m glad there’s a New York Times writing articles that educate people about diabetes. There’s no villain.
ABOUT THE AUTHOR
Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. In Just My Type Rebecca shares her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.
What is Type 1 Diabetes: Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and-at present-nothing you can do to get rid of it. [Source: JDRF]