The latest trend to go viral in the United States has been the ice bucket challenge in support of funding for research into amyotrophic lateral sclerosis or ALS. The challenge was initiated by Patrick Quinn, a young man with ALS, and has been spurred by friends and family of Peter Frates.
Frates was a former captain of the Boston College baseball team, who in an extremely cruel twist of fate was stricken with the disease made famous by another baseball player, Lou Gehrig. Frates and his family were astonished that 75 years after Lou Gehrig gave his famous speech that we are no closer to a cure for patients with ALS. The cause that his friends and family have committed themselves to has been extraordinary. Currently, the ALS Foundation has indicated that the “ice bucket challenge” has helped raise over $13 million.
ALS is a neurological disease caused by the loss of the motor neurons that populate the central nervous system. These nerves are critical to sending impulses from the brain and spinal cord to the muscles that allow us to walk, talk and breathe. Early in the disease course, patients often present with arm, hand or leg weakness or problems with speech or swallowing. Eventually the loss of motor neuron function causes an individual with ALS to no longer be able to breathe, necessitating the use of mechanical ventilator support.
There is no cure for ALS although there is an FDA-approved treatment, riluzole, which is beneficial when given early. Additionally, there are multiple treatments under investigation. It is clear that we need more research into improving our understanding of ALS. The current enhanced funding from individuals across all walks of life taking the ice bucket challenge is quite encouraging.
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However, there is another way individuals can support those like Quinn and Frates who are battling diseases such as ALS. The National Institutes of Health is the federal agency devoted to funding biomedical research. Over the past five years, the NIH has devoted over $225 million to ALS research or roughly 17 times more dollars than the challenge has raised. Previously, support for biomedical research had received bipartisan backing with the Senate voting 98-0 to support a doubling of the NIH budget in 1997. However, over the past five years Congress has constantly eroded NIH research support.
Funding for ALS research peaked in 2010 at $59 million. Since that time, there has been a 32 percent decrease in NIH funding for ALS research as a direct result of diminished congressional support. Currently, the NIH budget in real dollars (offset for inflation) is at the same level as it was in 2003. Since 2010, the effects of Congress’ meat cleaver approach to cost savings has resulted in an overall decrease in the Biomedical Research Cost and Development Index (adjusted for inflation) of over 12 percent.
Over the past five years, Congress has wiped out the effect of the doubling of the NIH budget. In fact, the NIH budget would be greater today had Congress increased spending to account for biomedical inflation in 1998 on a yearly basis rather than double the budget from 1998 to 2003, then putting a meat ax to the budget 2008-2014.
The marked decrease in NIH support has had a corrosive effect on the number of individuals pursuing scientific careers to help find cures for diseases such as ALS. It also threatens the United States preeminence worldwide in biomedical research as both China and Japan have increased their support in this area since 2007. An article in Nature Biotechnology estimated that invention contributions from public sector research institutions (mostly universities) have resulted in 153 approved drugs since 1991. Decreases in NIH funding directly affect the creation of life-saving drugs for the treatment of cancer, heart disease, stroke and ALS.
If asked to participate in the ice bucket challenge, by all means do so. At the same time, contact your local representatives and senators and ask them to bring back bipartisan support for increased NIH funding. This is the best way for us to tackle difficult to treat diseases such as ALS and assure that the U.S. remains the world’s leader in biomedical research.
Jonathan Serody, M.D., is Elizabeth Thomas Professor of Medicine, Microbiology and Immunology at the UNC-CH School of Medicine