The FAIR Foundation is dedicated to fair and equitable distributions of Nation Institutes of Health (NIH) research funds for all diseases, including the sixteen that kill more Americans than AIDS.

www.fairfoundation.org

3/30/05

The Honorable Congressman Tom Davis (R-VA-11th)
Chairman, Committee on Government Reform
2157 Rayburn House Office Building
Washington, D.C. 20515

RE: Committee Hearing: Stalking a furtive killer—A Review of the Federal Government’s
efforts to Combat Hepatitis C

Dear Congressman Davis,

Thank you for holding the referenced Committee hearing on hepatitis C. Please accept this letter as our formal request to testify at the next hearing on hepatitis C so that we can give evidence on this insidious disease that has caused one of us (R. Darling) to have three liver transplants, a heart attack, diabetes, muscular dystrophy and coma. Our testimony would include the following issues:

In reviewing the testimony from the Hearing, we note one area that was not addressed: insufficient funding by Congress and the National Institutes of Health (NIH) for hepatitis C. This is especially evident when NIH funding is compared to that for HIV/AIDS.

The death rate in our country from AIDS has plummeted as evidenced by the 98 percent drop in California’s newly infected AIDS patients[i] to 201 (as of 2/28/05) and this success against AIDS is being repeated throughout America, yet AIDS still receives ten percent (or 2.9 Billion) of the entire NIH disease research budget. On the other hand, although hepatitis C kills almost as many Americans as AIDS and has infected four to five times as many citizens, it received only 130 million in 2005.

Such exorbitant funding for AIDS has resulted in unfair allocations for all non-AIDS diseases, including the sixteen that kill a million more Americans than AIDS annually.[ii] For example, cardiovascular disease kills almost a million Americans compared to 18,017 (2003)[iii] for AIDS, yet the NIH is spending only $40 on each CVD patient versus $3,084 on each AIDS patient in research.[iv] Diabetes kills more citizens than AIDS and breast cancer combined, yet only $80 is spent on each diabetic in research and for hepatitis C patients, the low amount of $25 allotted.

Regardless if the funding comparison is measured utilizing “allocation per patient,” “allocation per death” or “total allocation” per disease, the great success of AIDS researchers has resulted in funding for AIDS now being disproportionately large relative to hepatitis C funding. In addition, hundreds of millions of dollars are raised for HIV/AIDS by celebrities and non-profit organizations (amfAR, etc.) while similar efforts do not exist for hepatitis C.

The NIH has responded to The FAIR Foundation’s requests to cease the favoritism afforded HIV/AIDS and to reallocate some of the present AIDS dollars to other diseases like hepatitis C by referencing global AIDS and the fact that AIDS is communicable (infectious).

What is the solution for global AIDS—more research? No, the answer to global AIDS is the same solution that has dropped the death rate in California’s newly infected patients 98 percent, namely: preventive education, the drugs that have been developed that have converted AIDS from an acute illness into a chronic illness (HAART or Highly Active Anti-retroviral Therapy) and Harm Reduction Policies.

Regarding the “communicable” nature of AIDS, hepatitis C is also a communicable disease and based on the NIH response, hepatitis C deserves more funding.

An unrecognized factor negatively impacting all non-AIDS diseases like hepatitis C is the “compounding effect” of present NIH policy. The existing funding total of each disease may be viewed as their “principal balance” for this analogy. If the President were to announce another 2 percent increase in NIH funding as he has in the past, the increase in AIDS funding would be approximately $60 million whereas hepatitis C will receive only $2.6 million. Each year the additional increases in the “principle balance,” or total funding, results in the “compounding interest effect” that increases the disproportionate funding for AIDS. Consequently, the gap in funding between AIDS and all other diseases like hepatitis C grows even larger.

The FAIR Foundation (FAIR is an acronym for “Fair Allocations In Research) is a national organization representing thousands of Americans—concerned citizens—who want change in the allocation priorities of the NIH as they apply to all diseases, including hepatitis C.

We are respectfully requesting that this letter and the enclosed 39 brochures be made available to all Committee members, and we look forward to your response regarding our testifying at the next hearing.

Thank you for your consideration.

Sincerely yours,

President and CEO, The FAIR Foundation                   Waldo Concepcion, M.D., FACS
2003 National Public Citizen of the Year (NASW)         Board of Directors, The FAIR Foundation
                                                                          Clinical Associate Professor of Surgery;
                                                                          Associate Chief, Division of Transplantation:                                                                           Stanford University Medical Center

[i] http://www.dhs.ca.gov/aids/Statistics/pdf/Stats2005/Feb05AIDSmerged.pdf Page two
CA Office of AIDS – patients infected in 2004 who died in 2004
[ii] http://www.fairfoundation.org/thesixteen.htm
[iii] http://www.cdc.gov/hiv/stats/2003SurveillanceReport.pdf Page 16
[iv] http://www.fairfoundation.org/factslinks.htm