Diabetes lobbying and my own Fiscal Confusion
If you’ve been paying attention to the big diabetes advocacy and lobbying groups, you know that Congress passed the Special Diabetes Program, also known as the SDP. This program allocates $150 million of federal funds towards diabetes research.
If you’ve been paying attention to my state Governor, you know that he openly chastised the House of Representatives, specifically one of his own political party leaders, for delaying a vote on the $60.4 billion Hurricane Sandy Relief Fund. “There’s only one group to blame,” he said, “for the continued suffering of these innocent victims.”
If you’ve been tuned into any television, video, or online media as 2012 came to a close, you know about the metaphorical financial precipice from which the United States was about to tumble. I don’t know all the details, but early morning on January First, we were caught in the middle of a free-fall and temporarily brought us back to relative safety.
I don’t know a whole lot about how our government works, how they put budgets together, or how they fund various special interests. Quite honestly, I’m not that interested. It confuses me, it bores me, and it angers me. So for the most part, I stay away from that news and am resigned to the fact that whatever will be, will be. Que sera, sera.
But sometimes I can’t tune them out. Especially considering the volume of emails I received in November from JDRF, ADA, and others encouraging me to call or write my elected officials to urge them to continue to fund the program. To tell the truth, I never even heard of the SDP until just recently. But when I got those emails, I was torn. Sure, I want to support “The Cause”, when The Cause is diabetes-focused research and aid. Why wouldn’t I? It affects me personally and profoundly, as does it affect many of my friends. But, in fairness, should I be asking our broke government to fund diabetes research?
What right do I have to say that funding for diabetes research is more important than finding cancer research? Or Angelman Syndrome research? Or epilepsy research (November is also National Epilepsy Awareness Month, and a friend of mine whose son has a very rare but very serious form of epilepsy called Dravet Syndrome reminded me of that)? Or any other of the multitude of diseases out there?
Or those whose lives were devastated by natural disasters?
I sat on those emails for a long time. They made it so easy for me to ask the government for support. I could call without dialing a phone. I could email without typing a letter. And what better way for a lobbying organization to get public support than to make it so easy for them? But I didn’t respond to those emails, not for weeks.
This isn’t the first time I was asked to pressure our government into promoting “The Cause”. A year earlier in September, a campaign was organized called “O is for Outrage”. You may remember it. Those in the New York area could descend on the city to be seen and heard, and those from elsewhere in the country could send postcards to demand the President speak to other world leaders at the United Nations about the need for insulin to be made accessible to all people in the world. Of course I would like to see insulin be made available to everyone across the world who needs it, just as I would like to see all medications made available to those who need it, but I didn’t think that this specific cause merited action by the President of the United States. It was the tenth anniversary of the 9/11 attacks. and for the President to go to Midtown Manhattan to talk about non-communicable disease while there was still a hole in the ground Downtown, while the communications failures of 2001 hadn’t been corrected, and while airport security efforts had become laughable, would seem a little disingenuous considering other, larger issues that the world, the country, and the city were facing. The President had more important things to do. While I would have loved to go to the rally to meet other PWD’s, my conscience told me this wasn’t the right thing to do, so I decided to sit out.
Please don’t hate me, and please don’t think I’m being insensitive. It was, for me, a really tough call to make.
Likewise, when it comes to the SDP, I was very close to doing nothing. But eventually, because it was for a renewal of a program and not the establishment of a program, and because the dollar amount was relatively small at $150 million, I reconsidered. Because I know that abruptly ending a program would effectively nullify the research done to date, I took action. I clicked the link and sent emails to my two Senators and my one House Representative. For the record, the two Senators responded rather quickly with form letters of their own, stating the importance of the SDP and emphasizing their past and future support. The House Representativesent a delayed response stating his understanding of the SDP and that he “will remember [my] support for this program as Congress considers its reauthorization.”
In the end, the SDP funding passed. It was part of that behemoth Congressional Budget, as a tiny strip of bacon in the much larger barrel of pork attached to the bill. To say it is “relatively insignificant” in the scope of the whole thing is an understatement.
Still, I wonder. Should the government, which is already drowning in debt, be funding diabetes research causes, and should I be encouraging them to do so? Is it an investment in a healthier future, or is it just financial irresponsibility? Maybe all this dough was destined to be cast into the wind anyway, and the diabetes community is just a lucky pigeon which managed to scoop up a few crumbs. I do know that if it were my own house teetering on the edge of bankruptcy, I wouldn’t be so generous.
I don’t have the answer, and I don’t know what I’ll do the next time I have the opportunity to ask my politicians to support “The Cause”.
It’s why I try to avoid fiscal politics. It confuses me, it bores me, and it angers me.
But all I want is to do the right thing.
Posted on January 4, 2013, in D-Finance, Diabetes, News. Bookmark the permalink. 6 Comments.
I hesistate to leave comments on blogs to tell people that they are wrong. In fact, I did not comment on your post about not sharing your diabetes with your wife even though I am pretty confident that she is more (emotionally at least) involved in your diabetes care than you realize. But in this instance, I feel quite comfortable in telling you that you are wrong.
First, I am probably more political and especially fiscally conservative than you are. However, if you do not support the SDP, I am going to need you to give your CGM back. The fact that most of us have relatively easy insurance approval for our CGM devices is because of SDP. You will probably need to start taking NPH and Regular again too. Approval of newer insulins were the result of studies of their effectiveness, so you are profiting there too. I hope you are not looking forward to a low glucose suspend feature on your pump, you wouldn’t have access to that either.
It is misguided to say that there should not be diabetes research because there are other diseases. Should we not study or research any of them then, because we cannot possibly fund them all?
I was born in New York. My family in PA lives less than a mile away from the crash site of Flight 93. I do not understand how issues with the TSA has ANYTHING to do with people DYING for lack of insulin? Do you understand that? People with diabetes are DYING because they do not have access to insulin! I visited a health clinic while I was in Haiti and they had never seen a patient with type 1 diabetes. When I asked why, they said that it was most likely because they are not living long enough to be seen. A few month later, I was talking to an executive at FRIO. They tried to donate their pouches to people in Haiti so they could keep their insulin cooler. They could not find enough places to donate them. For people in many countries around the world, type 1 diabetes is an almost immediate death sentence. I will take the “communication problems” in the US over wondering how I will feed my family and afford insulin and test strips any day.
I strongly encourage you to read more about what the SDP funds and what organizations like IDF do for people living with diabetes around the world before writing such misguided opinions again.
Hmmm…. good points to consider, Scott. I tend to look at it like congress (little “c” intended) would allocate the money elsewhere if they didn’t fund the SDP. I also wonder how much the government would spend in the future on diabetes if they didn’t allocate a few bucks now in research for a better tomorrow. I totally get where you’re coming from though. These are the hard decisions that our elected officials will have to come to grips with very soon.
Hi Scott. I hope that my comment is taken in the spirit of respectful disagreement that it’s intended.
Your post title rings true for me: there seems to be some confusion, and lack of research, done on your part. Most of us are guilty of this, so you’re not alone there – and I am often in this group as well. I would, however, invite you to take the time to research your viewpoint more thoroughly before taking the time to lay out an entire blog post on it.
Sara brings up the research and advancements that have resulted from SDP funding, so there is no need for me to reiterate that here. What I will add is that the cost of diabetes complications to the U.S. far surpasses the amount allocated for the SDP, and you can find more information about the cost to the U.S. of those complications in places like this:
This is a strong point that we made as advcoates for JDRF during the Government Day event in 2011, where we met with our members of Congress on Capital Hill. SDP funding was up for a vote then, too, and what I learned about what SDP funds has made me a strong advocate for it’s renewal every two years. I realize that not everyone has the opportunity to participate in something like this, but the research and data are out there that can allow you to become just as informed. You just have to search for it.
A country, and a people, are only as strong and productive as their health allows them to be. If a relatively small chunk can be allocated to further this mission (and to avoid even larger costs down the road), I see absolutely no way that it could reasonably be considered “financially irresponsible”. That would, it seem, apply to the opposite (in)action.
Thank you both, Sara and Kim, for your insightful feedback. Your responses have been on my mind all afternoon – trust me I’ve done a lot more thinking than I’m about to do writing. And if you think I’m wrong with something – this or anything else – please let me know.
Let me start by saying that I appreciate the explanations of what SDP is all about. I never claimed to understand it (everything I’d seen was pretty “high-level” and lacked specifics).
With that said, this post was not about the merits of the SDP, nor was it about abandoning diabetes research altogether. For what it’s worth, I’m absolutely confident that the diabetes community is better off because this program is being continued. It was about whether the US could afford to continue funding the program given its current financial situation, especially with the knowledge of other sources of funding. I never reached an answer, but I did ponder the following: Is the added expense now worth the healthier America later? Could this move our nation back to the top of the “leader/innovation” position from which we seem to be slipping? That’s the “investment” I referred to in the fourth-to-last paragraph. Kim, I think you may have had the same thing in mind at the end of your comment.
Regarding the 2011 campaign, I long thought it was something that I shouldn’t even bring up. But, for some reason I did, so I’m now obligated to address it. My belief is that it’s a worthwhile message; I didn’t feel that President Obama was the appropriate spokesperson. I’ll leave it at that.
To close, I’ll say that I wrote this from the approach of a casual conversation with a friend: exchanging thoughts and opinions without real research. Now, for the first time, I realize that this blog has a much broader reach, and as such I should follow a code of journalistic responsibility.
I did not consider my audience, some of whom are the very ones who work generously and tirelessly with the sole mission of helping people. That was irresponsible, and for that I apologize.
Going forward, I think I’ll probably avoid political or controversial commentary altogether. I don’t want to wear out my welcome in the DOC… I hope I haven’t worn it out already.
This post is EXACTLY the kind of blog post we need more of in this community. You have offered a critical look at the whole philosophical debate about what our government is deciding we should and shouldn’t spend money on. Like you mentioned in your response comment above, I took your post not as an attack or criticism of the SDP itself – but again, of the nature of how we judge financial decisions in this country when we’re facing the kind of money matters that we are. You make a valid point toward the end, about how you’d look at this if you were on the verge of bankruptcy… nicely put, because just think about how often (especially during the most recent campaign season) you heard politicians going on about “kitchen table budgeting” and doing things like most families probably would with their own finances. If you are about to go broke and can’t afford food and water for your own kids, then it’s probably safe to say you may have cut down or cut out completely charitable giving – no matter the need. Not everyone operates that way, of course, but many do. You do have to get your own house in order sometimes before you can focus on the bigger world and help others.
Now, I am a pretty liberal guy when it comes to politics and spending money. And I fully support the SDP for pretty much the reasons both Sara and Kim outlined above in their comments. I do happen to agree that we are where we are today in the state of D-tech and research because of this funding mechanism that many families successfully advocated for in the 70s and 80s (and many continue to do so today; myself included). If it went away, it’d be an incredible blow to this community and the future – not to mention all the jobs and research that is ongoing because of this funding. But it’s a FACT that an incredibly large number of federal lawmakers see this and other types of funding in the same light – if it’s new, then no; but if it’s a renewal, there’s more of a chance for support. And then there’s a whole other dynamic about $ being used even indirectly for controversial research such as stem cells – that has specifically resulted in No votes for this, including from the Congressman who just a month ago became Indiana’s newest governor. These are REAL discussions out there, and they need to be happening. Your writing about them here is not misguided or misinformed, even with your admission of not being familiar with the funding program’s nuances.
I found your point about the President’s attendance (or lack thereof) at the NCD Summit interesting, too… again, while I disagree and wish he HAD been present, because I personally see the need and benefit of his presence there, you raise an excellent point: The guy is busy with a whole lot of stuff. He’s the PRESIDENT of the U.S., after all. It’s kind of like asking someone to drop everything they are doing on a project at work the day before the deadline, in order to start and finish someone else’s project at work that has a deadline in a month. Priorities matter. Especially for high-level government folk. So while I think it was disappointing for Obama to not be at that Summit, I also get that he probably had other bigger priorities to deal with at that specific time. Does it diminish the “outrage” of how many people live (or hardly live) with diabetes globally? Well, not per se… but maybe. Other government leaders and organizations won’t take it as seriously because our elected leader didn’t make the time to attend. Again, politics is tricky stuff. And you’re right that sometimes, it can be the most frustrating thing in the world that you just want to avoid. That’s why many people do. But I am glad you didn’t with this post, and wrote about your own feelings and concerns that you’ve wrestled with. I’d bet there are MANY MANY MANY others out in the D-Community who feel the exact same way. Thanks for this post and everything you write, Scott – even if we disagree.
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