For those who would like to support continued and growing funding of the NIH, their budget is being voted on next week by a House subcommittee. Below is some information from the American Thoracic Society to help explain, but keep in mind that it's written for lung doctors and not patients. Also, the ATS tends to push for funding of the Heart, Lung and Blood institute (which is great for us, don't get me wrong.) HPS and CHS research falls under the Genetics Institute.
Should you want to contact your rep. you should really tell them that NIH funding means a lot to your family. You can tell them, or write to them, and telll them (briefly) your story.
Frankly, because HPS and CHS are so rare and because our memberships face so many socio-econonic challenges, if it weren't for government programs like the NIH, there would likely be no research on these disorders. We've had millions of dollars in research over the years because of NIH. We would have never been able to raise that kind of money to fund our research at another institution.
House Panel to Vote on 2011 Health Funding
July 8, 2010 - On Wednesday, July 14, the House Labor-Health and Human Services and Education (Labor-HHS-ED) subcommittee of the House Appropriations Committee, chaired by Rep. Obey (D-WI), will meet to consider the 2011 Labor-HHS-ED spending bill, which funds most health research and services programs, including the NIH and CDC. We do not yet know what funding levels the subcommittee is considering for NIH and CDC programs, but now is the time for ATS members and friends to urge the House to provide the following funding levels/cut preventions for these priority programs:
$35 billion for the NIH, with corresponding increases for all institutes and centers.
$8.8 billion for the CDC, as recommended by the ATS and the public health community. The President's 2011 budget has proposed a 2% cut to the CDC budget.
$3 million to create a Chronic Obstructive Pulmonary Disease (COPD) public health program at the CDC.
Prevention of a $1.2 million cut to CDC's domestic tuberculosis program proposed by the President's 2011 budget.
Please make your call to your House Representative between TODAY and the morning of July 14, EDT, to protect NIH research and CDC public health funding.
The following is a list of the House Labor-HHS-ED Subcommittee. If your member is on this list, please make a special effort to call. If your Rep. is not on this list, please contact them to urge support for these programs.
Obey (WI), Chair Lowey (D-NY)
DeLauro (D-CT) Jackson (D-IL)
Kennedy (D-RI) Roybal-Allard (D-CA)
B. Lee (D-CA) Honda (D-CA)
McCollum (D-MN) Ryan (R-OH)
Moran (D-VA) Tiahrt (R-KS)
Rehburg (R-MT) Bonner (R-AL)