Federal Funding for Medical Research: Why to Restrict Congress’s Influence

The United States Federal Government has been providing medical research funding to scientists since at least 1938, the first year such appropriations were recorded (“Appropriations”). These appropriations have been largely determined by the National Institutes of Health (NIH), an agency of the U.S. Department of Health and Human Services (HHS) and the “world's largest and most distinguished organization dedicated to maintaining and improving health through medical science” (President's Proposed 36). Next year, Congress is projected to give $32 billion to spend on research project grants (extramural research), intramural research, development and maintenance of research centers, and contracts (President's Proposed 36).

The NIH invests its money in many areas of medical research, from tackling illnesses head-on, such as cancer, HIV/AIDS and cardiovascular disease (“Estimates”), to basic research: the “fundamental observations made today [that] become the building blocks of tomorrow’s knowledge, therapies, and cures” (Fiscal Year 4). The NIH is “composed of 27 distinct institutes and centers, or ICs,” most of which “fund research in their respective health related fields” (What Happens). Every year, “20,000 independent experts from the scientific community” nationwide are selected to “review more than 80,000 NIH applications” (NIH Peer Review). The applications are graded and sent to the appropriate IC to decide how much funding should be given within that IC’s pool of money (What Happens). About one-fifth of the applications will be awarded, with an average commitment of $414,000 per year for 4.3 years (President's Proposed 39) and a maximum commitment of five years (NIH Grants IIA-44).

So which ICs get how much money? With tens of billions of dollars budgeted to the NIH every year, debate will arise as to how that money should be distributed. After an extensive review of NIH’s budgets, I find unevenness in the way their money is distributed to each IC. In arguably the most clear-cut example, $6 billion will be provided for cancer research in the 2012 fiscal year (“Estimates”). According to the FAIR (Fair Allocations In Research) Foundation, this translates to $11,000 per deceased patient (“Our Government's”). Funding for HIV/AIDS research, on the other hand, will come out to $3.2 billion, or $311,000 per deceased patient – a thirtyfold increase (“Our Government's”). The reasons for this disparity are many. HIV/AIDS in the United States has a horrific history, beginning in the early 1980s (“NIH Fact Sheets”). Until 1996, AIDS treatment was limited to “palliative care and management of opportunistic infections” (“NIH Fact Sheets”). Before 1996, HIV/AIDS funding was surprisingly small, not reaching $250 million until 1987 and $1 billion until 1992 (Folkers 459). It required grassroots activism from advocacy groups such as AIDS Coalition to Unleash Power (ACT UP) to pressure lawmakers to bring these numbers to the level that they should been in the first place. In an episode of the television news magazine “20/20” titled “Disease Politics,” reporter John Stossel provides an explanation into the HIV/AIDS activism:

If you want to know how to make money and influence the government, look no further than the AIDS lobby. Fifteen years ago, as AIDS was killing more and more people, NIH spent little on AIDS research. So, desperate to be heard, AIDS activists rewrote the book on medical research lobbying. They heckled President Reagan, stopped traffic, marched on Congress and accused politicians who ignored their demands of discrimination against homosexuals. … The result? AIDS research now gets more money per patient than any other disease.

Significant strides have been made since in the search for a cure, including the discovery of antiretroviral treatments and developments into “neutralizing diverse HIV strains” (“NIH Fact Sheets”). Because of these discoveries, transmitting HIV and dying from AIDS is much easier to prevent than it was 20 years ago. These developments lead me to believe that the urgency nowadays to find a cure to HIV/AIDS is no more significant than finding a cure for cancer or other diseases with life-ending consequences. Yet, the difference between dollars per diseased patient is still astounding, arguably in part to the increased pressure Congress has to keep it that way.

The politicking for medical research funds didn’t stop with HIV/AIDS. Stossel reminds us of similar success with breast cancer activism and activism for diseases that have celebrity support. He highlights the struggles of Joan Samuelson, a former lawyer with Parkinson’s disease. She left her profession to “devote what time she has left to asking Congress to set aside more money for Parkinson’s” (Disease). Her committee meeting discussing Parkinson’s was unsuccessful, with “[m]ost of the legislators’ chairs … empty” (Disease). It wasn’t until actor Michael J. Fox shared his experiences with Parkinson’s that convinced Congress to put more aside for that disease’s research. Stossel provides an excellent synopsis of the problem:

Now, given that these billions [provided to the NIH every year] are your tax money, you would think they [the NIH] would be sure to spend it on the research scientists think will save the most lives or relieve the most suffering. But amazingly they don’t, because Congress makes sure that they spent the lion’s share of the money on the people who have the most political clout.

But don’t blame the activists for this problem. Don’t blame our lawmakers either. The fact of the matter is our senators and representatives are elected by the People, and are thus forced to succumb to the pressure of supporting such activism. Otherwise, they risk losing their reelection. So, to achieve a better balance of funding, I propose we rid our Congress from most of the power they have over the NIH. That power – with the exception of how much money the NIH is given as a whole – is transferred to the NIH, a non-elected, politically unbiased body that has a better idea than Congress of how money should be distributed to their ICs.

This suddenly limits the People’s voice, you might say. However, I would suggest that this isn’t the case at all, because Congress is most concerned about simply staying in office. The only way that is possible is responding in favor of lobbyists – not you, the average U.S. citizen. Anything lacking “star power” will rarely win in Congress, regardless of how attached or detached the NIH is from the government. You might also say that the only way HIV/AIDS research could have increased in the NIH was with star power and activism; the NIH wouldn’t increase funding on their own. I beg to differ. Because researchers at NIH know more than the senators and representatives that fund them, HIV/AIDS research money may have reached legit amounts much earlier, and activism wouldn’t have been necessary. I especially believe that nowadays, as we move towards a more accepting and prejudiceless culture.

Should the NIH take over all financial decisions, it is possible that they begin to provide less toward HIV/AIDS and more towards diseases with higher death tolls, such as diabetes and cardiovascular disease, in an effort to make funding more balanced among the medical research areas. I know many will not like this change, but all things considered, I’m okay with it. Tom Coates, a professor at the University of California in Los Angeles, and others suggest not to “drag AIDS care and prevention down to the level of every other disease, but let's bring everything else up to the level of AIDS” (“Experts”). Unfortunately, it’s wishful thinking. In an ideal world, we have unlimited funding to provide for scientific studies of all kinds. But we don’t; we’re in the worst recession since at least the 1980s.

The political influence is too great in an area that so vastly affects our well-being, and it’s affecting how money is spent. Let the NIH make its own decisions as to how money should be funded across its many ICs. We can make more rational, balanced, and effective decisions on the distribution of medical research this way. Call or mail your representative today.

Works Cited

"Appropriations." The NIH Almanac. National Institutes of Health, 3 Oct. 2011. Web. 30 Nov. 2011. <http://www.nih.gov/about/almanac/appropriations/index.htm>.

Disease Politics, 20/20. American Broadcasting Company, 1999. Web. 30 Nov. 2011. <http://www.fairfoundation.org/stossel.wmv>.

"Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)." NIH Research Portfolio Online Reporting Tools (RePORT). National Institutes of Health, 14 Feb. 2011. Web. 30 Nov. 2011. <http://report.nih.gov/rcdc/categories/default.aspx>.

"Experts Rethinking Billions Spent on AIDS." MSNBC.com. 18 Jan. 2008. Web. 30 Nov. 2011. <http://www.msnbc.msn.com/id/22726852/ns/health-aids/t/experts-rethinking-billions-spent-aids>.

Folkers, Gregory K., and Anthony S. Fauci. "The AIDS Research Model: Implications for Other Infectious Diseases of Global Health Importance." JAMA, The Journal of the American Medical Assocation 286.4 (2001): 459. American Medical Association. Web. 30 Nov. 2011. <http://www.niaid.nih.gov/about/directors/Documents/aidsmodel.pdf>.

"NIH Fact Sheets - HIV/AIDS." NIH Research Portfolio Online Reporting Tools (RePORT). National Institutes of Health, 14 Feb. 2011. Web. 30 Nov. 2011. <http://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=30>.

NIH Peer Review Revealed. National Institutes of Health, 29 Sept. 2011. Web. 30 Nov. 2011. <http://youtu.be/fBDxI6l4dOA>.

"Our Government's Bio-Medical Research Allocations by the National Institutes of Health." The Facts. The FAIR Foundation. Web. 30 Nov. 2011. <http://www.fairfoundation.org/factslinks.htm>.

United States of America. Department of Health and Human Services. National Institutes of Health. By Francis S. Collins. Fiscal Year 2012 Budget Request. 11 May 2011. Web. 30 Nov. 2011. <http://www.nih.gov/about/director/budgetrequest/fy2012budgetrequest.pdf>.

United States of America. Department of Health and Human Services. National Institutes of Health. NIH Grants Policy Statement. 1 Oct. 2011. Web. 30 Nov. 2011. <http://grants.nih.gov/grants/policy/nihgps_2011/nihgps_2011.pdf>.

United States of America. Department of Health and Human Services. National Institutes of Health. President's Proposed 2012 NIH Budget. 14 Feb. 2011. Web. 30 Nov. 2011. <http://www.nih.gov/about/director/budgetrequest/NIH_BIB_020911.pdf>.

What Happens to Your NIH Grant Application Video. National Institutes of Health, 16 Sept. 2011. Web. 30 Nov. 2011. <http://youtu.be/DuuAGROm_1Q>.