My Point of View by Jennifer Vogt-Erickson

My grandmother spoon-fed my grandfather at the kitchen table after amyotrophic lateral sclerosis — better known as ALS — stole his ability to lift a fork to his mouth. By the time he died in 1959, his body had become nothing but a prison for his industrious mind. He was 53; my dad was 9.

As the ALS Ice Bucket Challenge has gone viral on social media over the past few weeks, it has been great to witness a proliferation of awareness about the disease. So far the effort has raised over $70 million for the ALS Association.

Considering that ALS quietly afflicts only about 30,000 people in the United States at any given time, this is a huge outpouring (pun intended) of support. My son and I will dump ice water on our heads and donate because it’s fun and it’s personally important to me, but there is a larger challenge we should highlight.

This tide of money for the ALS Association is unlikely to repeat itself next year. Part of the attraction of the challenge is its novelty. People will move on to the next thing and most won’t look back. There’s little chance the ALS Association will find another gimmick that comes close to rivaling their phenomenal results from this summer.

I have no doubt the ALS Association will put the windfall to good use for people who live with ALS or care for those who do. This is not the most effective way, though, to fund sustained medical research that leads to breakthroughs and reduces suffering in the future.

Sustained research is expensive and requires a stable funding source. The biggest supporter of this type of research is the government, particularly through the National Institutes of Health, by a margin of 6 to 1 over philanthropies.

Basic research on potential treatments and eventually a cure for ALS and other diseases has been negatively impacted by cuts in the NIH’s federal funding. Funding for ALS research specifically has fallen by a third since 2010, down from a peak of $59 million.

Congress has cut the overall NIH budget by $6 billion, or 25 percent, over the last 10 years. The budget sequestration of 2013 resulted in a 5 percent cut alone. The government shutdown in the fall of 2013 disrupted clinical trials and temporarily halted the review of new research applications. Already, only 16 percent of current applications for research funding are approved by the NIH, half what it was 10 years ago.

The economic and humanitarian implications are great. America’s once-dominant lead in biomedical research — an undeniably positive role in global leadership — is eroding and recently fell below 50 percent. Overall, the money spent on this research yields estimated economic dividends of 25 to 40 percent per year to our country. However, the payoff is slow, so private companies have less incentive to invest in it, especially basic research. Private research often builds on the freely available results of public research.

Few people, at some point in their lives, don’t benefit from medical discoveries at least partially funded by the NIH. It funds research for diseases that affect far more people than ALS, including cancer, Alzheimer’s, stroke and heart disease. Our health is critical to both our personal quality of life and also our national strength, and the NIH has helped us face challenge after challenge.

Several legislators who voted for cuts to the NIH also participated in the ALS Ice Bucket Challenge, including Paul Ryan, R-Wis., and Erik Paulsen, R-Minn. I’m glad they threw their support to the cause in that small gesture, but their votes did exponentially more damage than their donations can repair. Taking a more moderate view of budget negotiations would have been a much more powerful way to support people who live with ALS and other diseases.

Fixating on government “overreach” and “wasteful spending” is only helpful to a certain point. The ideology of limited government is also limited in empathy, and it’s not long before cuts start harming people you know.

The next time somebody claims the government is in the business of “spoon-feeding” people, think instead about the caregiver who sets down a spoon and then tenderly wipes the lips of someone with ALS. The medical breakthroughs we make for the disease are your tax dollars at work, and you can take pride in that.

 

Albert Lea resident Jennifer Vogt-Erickson is a member of the Freeborn County DFL Party.