"ALS and US"
Date: May 1, 2008
Subject: ALS research funding
To: Elias A. Zerhouni, M.D.
Director, National Institutes of Health
Dear Doctor Zerhouni,
My name is Jim and I have Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease. I have been researching the National Institutes of Health’s research and grants funding. Frankly, the victims of ALS are not receiving a proportionate share of research funds. One of reasons I say this is the fact that approximately the same number of people die from ALS and HIV/AIDS each year! NIH spending on HIV/AIDS is over 745 times that of ALS! NIH funding of ALS research has decreased $5 million in 4 years! During the same 4 years NIH funding of HIV/AIDS research increased by $58 million? That $58 million increase is $19 million more than your entire allocation for ALS!
I have lived in Arlington VA for 66 years and I know that strange things happen with taxpayer’s money, and its distribution, on Capitol Hill. This is a life or death matter for me, and thousands of others, as well as the numerous future victims of ALS—we have no chance of survival. After almost 140 years, from ALS’s identification as an unrelenting killer, research has produced one approved drug--Riluzole, its cost is $1000 a month and its benefits supposedly extend life by three months; therefore, I would like to know the following:
1. Do you have a page on the NIH website lists the incoming funds?
2. Are the NIH funds received from Congress already directed to specific research areas?
3. Does the NIH receive funds from non-government sources, if so, are they pre-targeted?
4. Who should I contact about getting ALS a more proportionate amount of NIH research funds?
We need to resolve the health problems here in the United States before we try to cure the world! Many of NIH’s research and grant subjects appear more traditional or political than the actual burden of disease. There is an obvious inequity in the distribution of NIH research funds! I trust that you will correct this inequality!
Thank you and be well,
Jim_VA AKA- pigiron308@yahoo.com
cc:
Senator John Warner http://warner.senate.gov/public/index.cfm?FuseAction=Contact.ContactForm
Senator Jim Webb http://webb.senate.gov/contact/
Congressman James P. Moran http://moran.house.gov/zipauth.shtml
Senate Majority Leader, Harry Reid http://reid.senate.gov/contact/index.cfm
Speaker of the House, Nancy Pelosi http://speaker.house.gov/contact/
Chairman of the House Committee on Energy and Commerce, Congressman John P. Dingell http://energycommerce.house.gov/membios/contact_form.shtml
Deputy Secretary Jim O’Neill, U.S. Department of Health & Human Services Fax 202-690-7203 Jim.O'Neill@hhs.gov
Senator Hillary Rodham Clinton http://clinton.senate.gov/contact/webform.cfm
Senator John McCain http://mccain.senate.gov/public/index.cfm?FuseAction=Contact.ContactForm
Senator Barack Obama http://obama.senate.gov/contact/index.php
Augie’s Quest, MDA’s ALS research initiative www.augiesquest.org
CEO ALSA, Gary A. Leo Fax: (818) 880-9006
