Dear Averi, 

I hope 2006 finds you in good health. Please accept this email as a follow-up to my presentation to you last October. 

Today, I want to insure that Congresswoman Delauro and you are aware of the latest statistics on AIDS deaths, which reflect the great success that has been accomplished nationally and in Connecticut. For example, in 2005, deaths in newly infected California AIDS patients plummeted 98.5% from their high of 9,602 in 1992 to 144 (one hundred forty-four) deaths as of 12/31/05 (see page two here). In Connecticut, the success has resulted in a 2005 HIV/AIDS death total of 17, an impressive 98 percent decrease from the high in 1995 (see CT Dept of Health). One might compare that total of 17 to 12,000 and 9,000 deaths for heart disease and cancer respectively. Please bring this news of great success against HIV/AIDS to Congresswoman Delauro’s attention with our continuing request that a portion of the present NIH research allocation for HIV/AIDS (ten percent of the entire NIH research budget) be reevaluated and redistributed to other illnesses.

The NIH has responded to this request from our organization by referencing global AIDS and the fact that AIDS is communicable (infectious).  

What are the solutions for global AIDS—more research? No, the answers to global AIDS are the same solutions that are responsible for the stunning decrease in HIVAIDS deaths nationwide, 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. Indeed, this was stated by the NIH’s Dr. Fauci on CNN when asked what the answer was to Global AIDS.

Regarding the “communicable” nature of AIDS, Congress must force realization upon the NIH that simply because an illness is “infectious” does not warrant disproportionate research funding and if one is to use the “infectious” argument it should be applied uniformly. For example, hepatitis C is also infectious and kills more AIDS patients than AIDS does now (see here), yet the NIH is spending $25 per HCV patient versus $3,084 per HIV/AIDS patient in research. Furthermore, patients suffering from non-communicable illnesses such as prostate disease, Alzheimer’s disease, diabetes, orphan diseases, etc. should not be discriminated against because they cannot transmit their disease to another person or because its etiology is congenital or acquired by environmental causes. 

An unrecognized factor negatively impacting all non-AIDS diseases is the “compounding effect” of present NIH policy. The present funding total of each disease may be viewed as their “principal balance” for this analogy. If the President were to announce a 2 percent increase in NIH funding, the increase in AIDS funding will be approximately $60 million whereas Alzheimer’s disease will receive only $14 million and Chronic Obstructive Pulmonary Disease (COPD) $1 million even though those two diseases kill, respectively, three and nine times more Americans than AIDS. 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 grows even larger. 

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 disproportionate and inequitable. In addition, hundreds of millions of dollars are raised for AIDS by celebrities and non-profit organizations (amfAR, etc.) while similar efforts do not exist for many other diseases.

The FAIR Foundation (FAIR is an acronym for “Fair Allocations In Research) is a national organization representing thousands of Americans—concerned citizens—who want the success of AIDS advocates and AIDS researchers recognized with a corresponding change in the allocation priorities of the NIH. On behalf of our members we are respectfully requesting that AIDS research allocations be reevaluated based on its lessened threat to our society with a corresponding redistribution of a portion of its funding to other illnesses. In light of budgetary constraints now eliminating funding increases for the NIH, such reevaluation is imperative.

Please thank Congresswoman Delauro for her consideration in this urgent matter and note that this email is co-signed by the FAIR Foundation’s 28-member Board of Directors of physicians and disease advocates.

Gratefully,

Richard 

Dr. Richard Darling, DDS: National Public Citizen of the Year  (NASW-03)
President and CEO: The FAIR Foundation, a national movement to reverse inequities in research funding distributions by Congress and the National Institutes of Health
Founder: The Coachella Valley Hepatitis C, Liver Disease & Transplant Support Group
Board of Directors: United Organ Transplant Association
Ambassador: OneLegacy, a transplant donor network
Author: Coma Life, an autobiographical memoir of survival over hepatitis C, liver cancer, 3 liver transplants, heart attack, diabetes
Address: 78629 Bougainvillea Drive, Palm Desert, CA 92211 Ph: 760-200-2766 

Co-signed by the FAIR Foundation Board of Directors