As of last Friday, the Amyotrophic Lateral Sclerosis Association has raised the sum of $115 million in its effort to cure the neurodegenerative disease of its namesake, more colloquially known as Lou Gehrig’s disease, but one Texas Tech scientist questioned whether this is a good substitute for federal funding.
The Hub@TTU’s Sarah Self-Walbrick wrote about the issue of Texas water conservation amid the viral philanthropy of the ice-bucket challenge that has drawn in politicians of all stripes, such as U.S. Rep. Randy Neugebauer, R-Lubbock, who took the challenge on August 17 and donated $100 to the cause. Shortly after, he passed the baton to his peers: Texas Tech Chancellor Robert Duncan, state Sen. Charles Perry and former Texas Tech University System Vice Chancellor Jodey Arrington. Perry, R-Lubbock, recently beat fellow Republican Arrington in a special election to replace the Texas senate spot vacated by Chancellor Duncan.
The money raised thus far has been significant in mending the budget cuts that House politicians put the National Institute of Neurological Disorders and Stroke through in 2011, when austerity-minded politicians such as Neugebauer sequestered government funds before voting for the law.
When asked whether cuts to funding to neurological research made his donation problematic, Neugebauer said the money raised, which has reached almost three times the annual budget at NINDS, is American voluntarism picking up the tab for the money that federal ALS research lost to its budget since sequestration.
“I’m glad to see reports that, as of today, ALSA rose $111.6 million through a creative fundraising campaign and the incredible generosity of the American people,” Neugebauer said in an email. “This successful campaign is a prime example of the innovative ability of the private sector to fund research that the government can never afford to match.”
Neugebauer’s offices did not respond to requests for further comment on whether he believes successful charity drives, such as the ice-bucket challenge, should entirely replace government funding for ALS or whether he expects success like that to be repeated in all the other areas of medical research potentially slashed during sequestration.
“He’s naïve to think the private sector can have more importance than (National Institute of Health) funding,” Texas Tech University Health Sciences Center’s Department of Neurology Chairman John C. DeToledo, M.D., said of Neugebauer. “(NIH is) a very structured and detailed system that incentivizes hard work from talented people.”
Dr. DeToledo, Photo Courtesy of the neurology department
Over the last three years, NINDS’ annual funding for ALS research has fallen by 12 percent. The budget in fiscal year 2011 and 2012 was $44 million, but it decreased to $39 million in 2013, according to data from the NIH’s website. The table projects the budget to hit $40 million by the end of fiscal year 2014.
At Texas Tech’s Department of Neurology, funding from the NIH is a significant boon to the doctors who are studying the debilitating effects of ALS and attracting federal grants.
“NIH funding is very important to what we do here and promotes a competitive environment among talented people,” Dr. DeToledo said. “When you take that money away, it might discourage a whole generation of talent wanting those resources for their hard work.”
The neurology department chairman and professor also said Neugebauer’s political vision of the private sector in medical research should acknowledge the importance of state funding.
“I disagree with him completely,” he said. “The lack of oversight (in private fundraising) can create opportunities for favoritism, for example.”
He said that another advantage of NIH funding is that it is better at benefiting the community being served. Dr. Ahmed Eldokla, M.D., an associate professor in the Health Sciences Center’s neurology department, is behind most of the ALS research conducted in Lubbock.
Dr. Eldokla conducts most of the ALS research at the Health Sciences Center. Photo Courtesy of the neurology department.
Tanner Hockensmith, the executive director of ALSA of Texas, said Neugebauer’s decision to vote against the Budget Control Act of 2011 could be justifiable by the pressure that politicians faced at a crucial moment in legislation.
“We understand that they had prerogatives to meet when they voted for the Budget Control Act,” he said, “and if that’s what their goal is, then that’s fine.”
It appears federal spending will be increasing after years of declining. Almost all of the total 237 areas of research spending are expected to increase from fiscal year 2013 to 2014, according to a NIH table on categorical spending. Of those, 47 have either met or surpassed their pre-sequestration spending, such as Alzheimer’s disease.
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