FAIR Foundation: for a better distribution of health research funds in the US

Earlier this year, I had the opportunity to meet Richard Darling, founder of the FAIR Foundation. From their site: "The FAIR Foundation was formed because of the inequities in disease research spending by Congress and the National Institutes of Health (NIH). " (this is in reference to the US)

When I talked to him, these figures caught my attention:

Disease: HIV/AIDS
-2007 NIH Research $2.9 Billion
-Deaths Per Disease: 16,316
-$ Per Patient Death: $ 178,046
-$ Per Patient: $ 3,052

Compared to,
Disease: Diabetes
-2007 NIH Research: $1 Billion
-Deaths Per Disease: 73,965
-$ Per Patient Death: $ 14,236
-$ Per Patient: $50

Granted that most cases of diabetes do not result in death, strictly speaking, it does seem quite unbalanced.

What are your thoughts?

For more info, check out their December newsletter. if you find their mission something that you feel should be supported, membership is free. Just click “Join” on their web site: http://fairfoundation.org

I forgot to mention, Richard became a member of TuDiabetes shortly after we met.

This is is member page, in case you want to drop him a line in his Comment Wall:

It seems VERY unfair to me! I said when all thr HIV/AIDS came out that if it hadn’t I felt like they might have found a cure for diabetes! I know, I know very shelfish thinking but at that time and still today I want a cure of something SOOOOOOO bad for the future!!! I’m really sad for HIV/Aids to be out there and it really hurts my heart when I see one of my friends (and YES I have seen them) pass from the awful deiase but it just always has seemed to me that when they found insulin and they found out that would sustaine us to live a somewhat normal life they felt they had found the CURE and have only worked on ways to make it work better! Yes they tried the pancres transplant (which worked for me for 2 years then died and I spent more time in the hospital and in pain from it than when I had a carwerak that almost killed me. Loooooong story.) the isolet transplant and so on but still no cure! I did the transplant to find a cure for my children so they wouldn’t have to live with all the emotions and other stuff you have to go threw daily ( you want a really bad feeling when I had my pancres transplant I knew the only way to get one was if someone died then about 6 years after the surgery and rejection they let both the doaner and recepient write each other at Christmas time I thank the lady who donated her husbands organs for thansplant “because it gave me a little more time to be with my (then 2 year old and 3 year old)” Only for her to write me back and say that her husband had a 4 & 5 year old sons! I cried harder that day than I did the day my mom died) Sorry I had to say that and I really hope it didn’t offend anyone! I was greatful that I got the organ but just so upset that the wonderful man who had lost his life and gave me a chance to live a little longer had 2 small sons at that time too! AND I HAD LOST THE ORGAN AND WAS STILL ALIVE! WHY COULDN"T HE BE TOO?
Anyway my oldest daughter is now a Type 1 with a little 14 month old daughter and going to have another girl in April and my other daughter is healthy (so far) and will graduate in May of next year! Maybe ppl will see someday diabetics need help too!

Thanks for posting this information; Deb Butterfield cited these statistics in 1992, and its interesting how they have changed – but surprisingly, not by much on a percentage basis. She wrote an editorial (I referenced it in my blog posting a while back), and its nice to have updated data! The charts really tell the story, however.

Let me just note that I added a video to the TuDiabetes video section from ABC News posted originally on the FAIR Foundation. See http://tudiabetes.com/video/video/show?id=583967%3AVideo%3A222670 to view that. The page contains relevant disclosures about licenses for the program as well.

Thank you Scott! I will check this out. It’s so nice to see that other’s agree with my point of view here.

Scott just watched and read those sites and it’s really sad so sad that ppl like Arlen Spector and Clition don’t see the need for us. I guess it’s like John said we need someone famous.

I wanted to update you guys on the work of the FAIR foundation, a group that continues to seek a better distribution of health research funds in the US.

Their most recent newsletter in 2009 (http://fairfoundation.org/news_letter/2009/02june/000newsletter.htm) opens by indicating:
“The new California Department of Health Office of AIDS reports state that in 1992, 9,802 patients who were diagnosed with AIDS died that same year. In '08 the number of patients who were diagnosed with AIDS and died in 2008 was 176 -a 98 percent rate decrease that illustrates the phenomenal success our country has achieved against HIV/AIDS. The overall total of HIV/AIDS deaths is down from 7,975 to 642–an 92 percent decline. It’s also noteworthy that some died from auto accidents, assaults, suicide, etc.—the Office of AIDS does not filter out those so the actual number who died from AIDS is actually less. Compare to that state’s 7,414 deaths from diabetes.”

This is a group worth supporting. You can read more about them on their home page:
and by connecting with Richard Darling, their President and CEO, who is also a member on TuDiabetes:

Thanks for the update. Incredible organization worth supporting & joining.

Thank you, Manny, for this post notifying your members of our work at the FAIR Foundation that exposes to Congress and the NIH the poor bio-medical research funding total for diabetes. We also are very involved in promoting new organ-donor policies because 77,000 of the 105,000 on the waiting list need a new kidney and altruism is not meeting the demand. With a new member joining FAIR at ADA Expos throughout the USA, on average, every 2 minutes all day long (pictures of many here) we have recognized their plight and displeasure with the status quo by adding diabetes directly to our Home page’s opening examples illustrating the need for change with fair & equitable funding. Of course, we have profiled diabetes as our “Focus Disease” in many of our newsletters, most recently here. I urge all tudiabetes.org members to help us achieve our objectives by joining our organization—membership is free at this time and there is strength in numbers.
Dr. Richard Darling, DDS: Past National Public Citizen of the Year (NASW)
President and CEO: The FAIR Foundation,
Founder: The FAIR Foundation Transplant Support Group
Author: Coma Life, an autobiographical memoir of life “within” coma and survival over hepatitis C induced liver cancer, coma, 3 transplants, heart attack, diabetes & Muscular Dystrophy