Friday, April 19, 2013

ALL People With Diabetes Should Write to Their Senators About Signing the Casey-Burr Letter Today!

Today, I got an email from JDRF about asking me to contact my Senators to sign onto the so-called Casey-Burr letter to maintain a strong commitment to medical research funding at the National Institutes of Health (NIH).  Senators Bob Casey (D-PA) and Richard Burr (R-NC), who, incidentally, happen to be working on a nice, bi-partisan initiative (something we don't see very much of these days in U.S. Congress) asking fellow Senators to sign their letter to the Senate Appropriations Committee supporting funding for NIH in fiscal year (FY) 2013.  The letter requests that the Senate Appropriations Committee maintain a strong commitment to biomedical research and NIH in the FY 2013 Labor-Health and Human Service-Education Appropriations bill.  There's a risk funding which keeps researchers working on treatments and cures could be shut down entirely for a period of time due to the budget sequester if something isn't not done.

This impacts ALL people with diabetes (not type specific)

JDRF did not have a pre-written letter for this one but there was a LOT of room for personal comments in the form.  However, as I thought about it, I realized (thanks to Bob Pedersen's [@rpederse] very eloquent post, that this is not a type 1, type 2 or gestational diabetes issue, it's a DIABETES issue, and by that, it means it affects any person with diabetes.  True, JDRF has a reasonably well-organized government relations system (although the organization sucks at the state-level, incidentally, on September 23, 2004, Larry Soler admitted to me in an online chat which I blogged about HERE  [you read the old transcript by clicking HERE] that the organization's advocacy initiatives are primarily at the Federal level.  Incidentally, Cynthia Rice is Larry's successor) which helps to get the word out about things like this, but doesn't it also make sense to ask why the ADA and others aren't advocating for this?  Perhaps that's asking for too much, but I don't really think so.

But I felt it was worth sharing what I wrote and the perspective I shared with my two Senators:

Dear Senator [Last Name]:

This issue is important to me personally.  In spite of a rapid rise in the incidence of diabetes (both type 1 and type 2), federal funding for diabetes has simply not kept pace.  For example, were you aware that the U.S. Federal Government's Bio-Medical Research Allocations by the National Institutes of Health totals $1.1 billion for diabetes research 2013?  On the surface, that SOUNDS like a generous allocation, but when one looks at the money on a per-patient or per-patient death basis, diabetes funding is significantly smaller than it is for other diseases including HIV/AIDS, Breast Cancer and even the West Nile Virus.

For example, using NIH statistics along with CDC's National Vital Statistics (Report Vol. 60, number 3 for the number of deaths attributed to diabetes), combined with the CDC's report of 23.6 million patients with diabetes at the CDC site ( reveals that we spend a mere $47 for each patient with diabetes, while on a per-patient death basis, the number works out to a more respectable $16,010 (although I would note that the cause of death for largest portion of people with diabetes is not diabetes itself, but from cardiovascular disease, hence the actual number per patient death associated with diabetes is likely to be far smaller).

Still, when one compare this to our spending on other diseases, such as HIV/AIDS, where the U.S. will spend an unbelievable $3.1 BILLION this year, which amounts to a stunning $2,818 per patient with this disease, or $329,576 per each patient death attributed to AIDS.  Breast Cancer figures, while not quite as generous as spending on HIV/AIDS, nevertheless amounts to a total of $711 million, and on a per patient basis, it amounts to $3,401 per patient or $17,308 per patient death attributed to breast cancer.  Each diabetes patient gets a mere $47 (that's right, just forty-seven dollars).

Can we really say the amount spent on diabetes is fairly allocated?
I don't think so.

The bottom line is this: the cost of TREATING diabetes is hitting the Federal Budget via money allocated to Medicare in a significant way (and with Baby Boomers retiring in record numbers, the numbers aren't likely to decrease any time soon), and yet the money we allocate to diabetes on a per patient or per patient death basis is really tiny.  But perhaps more importantly, the Casey-Burr Letter in Support of NIH Funding will at least ensure we don't allow this critical spending to be cut because of Washington's inability to agree on much of anything.  I urge you to sign the Casey-Burr Letter in Support of NIH Funding today.

Scott Strumello
Your Constituent and a Regular Voter

Now, let me admit that I didn't bother to do the math myself; I rely on The FAIR Foundation's statistics (see for their site), but basically, if you do a comparison, here's what things look like when we compare our tax dollars allocated to the diseases I mentioned in my letter, but have a look at this graphic from The FAIR Foundation:

Note how I've circled (in red) the amounts allocated per patient for diabetes, HIV/AIDS and Breast Cancer.  Everyone with diabetes should be pissed off that our government thinks its being so generous that it spends $47 on each one of us, yet spends like $3,000 on each person with AIDS (which these days, is a chronic illness which is largely preventable) and even more on people with breast cancer.

You may find your Senators by visiting  You can copy my letter, or write your own, but the most important element is to ask them to sign onto the so-called Casey-Burr letter to maintain medical research funding at the National Institutes of Health (NIH).


Kristin said...

Nicely said! I was pretty struck by that comparative funding of disease-specific research as well. The ADA does work with JDRF on Special Diabetes Program renewal, but maybe not on this specific letter (not sure).
JDRF Advocacy not focusing on local issues is a good point - I understand the need to keep a laser focus on research, which is funded nationally, but I wonder if there's a way to engage in local advocacy without diluting that...

type 2 diabetes said...

If this means they will focus more on medical research to help other people who needs it most, why not? I guess i'll write my own letter for this. There are so many things we want them to know. I think it's best to give it a personal touch.