Letter: More funding needed for ALS research

By on June 25, 2009

How much is a human life worth? According to the United States government, mine is not valued very highly.

In 2003, I began experiencing symptoms later diagnosed as amyotrophic lateral sclerosis (ALS), widely known as Lou Gehrig’s disease.

ALS is a progressive neuromuscular disorder that weakens and destroys motor neurons, causing paralysis and death. There is no cure or effective treatment. In the 150 years we have known about ALS, science has unveiled few answers as to its cause or progression.

Approximately 35,000 people in the U.S. live with ALS at any given time, including an alarming number of recent veterans. As ALS is relatively rare, I was disappointed, but not surprised to find pharmaceutical companies uninterested in funding research, but was shocked how government supports ALS research compared to other conditions.

I found the National Institutes of Health (NIH) spends billions of dollars for research—the vast majority targeting preventable, treatable, and non-life threatening diseases. The sample below provides perspective of how much money the NIH is willing to spend to prevent each death in the following diseases (2008): HIV/AIDS: $198,263; substance abuse: $162,353; sexually transmitted diseases: $40,833; ALS: $7,167.

I shared my statistical analysis with Rep. Bill Foster. He was impressed by the manner in which these statistics highlight inequities in NIH grant allocations and believes hard statistics help legislators make good decisions about how and where to direct federal funding.

Don’t misunderstand me. The targets of NIH research dollars are deserving. However, I believe government’s main role in health research should focus on basic research and on areas deemed unprofitable by private industry.

July 4 marks the 70th anniversary of Lou Gehrig’s famous “Luckiest Man” speech and many ALS awareness activities are planned to commemorate this occasion. Please help raise awareness of ALS by sharing this information with their elected federal officials and the Secretary of Health and Human Services.

Steven Heronemus
Batavia, Ill.