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1/4/06 The Honorable Ralph
Regula RE: Formal Request to Give Oral Testimony Dear Chairman Regula, Please accept this letter as my formal request to give public testimony before the Subcommittee on behalf of the FAIR Foundation members, including our 29-member Board of Directors consisting of eminent physicians and disease advocates (see enclosed list). The FAIR Foundation is a national organization representing thousands of members and supporters (many from Pennsylvania) who are calling on Congress and the National Institutes of Health for fairer and more equitable disease research allocations. I have recently given over seventy-five presentations to Legislative Health Assistants, including one to almost every Health Assistant who works for the House and Senate Appropriations Committee members (Viquar Ahmad included) regarding these issues. I am hopeful that you will now allow me to bring this issue of fairness directly to the Subcommittee with my oral testimony and the opportunity to respond to any concerns regarding our recommended policies to improve the present methods of funding research. Thank you for your consideration and I look forward to meeting your Subcommittee. Sincerely yours,
Dr. Richard Darling,
DDS: National Public Citizen of the Year (NASW-03) Note: In April of 2005, the FAIR Foundation submitted this written statement for inclusion into the record for the 2005 Hearing. Subcommittee on Labor-HHS-Education RE: Submission of written statement for the hearing
regarding 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 of the entire National Institutes of Health (NIH) disease research budget. 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. Only eighty-eight citizens died of the West Nile Virus (WNV) in 2004,[v] yet $17,408 is being spent on each patient infected with WNV and while hepatitis C (HCV) affects 4-5 times as many as AIDS and kills almost as many, only $25 is allocated for each HCV patient. 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 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 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 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, Congress must force realization upon the NIH that simply because an illness is “infectious” does not warrant disproportionate research funding. Furthermore, patients suffering from non-communicable illnesses such as prostate diseases, Alzheimer’s disease, arthritis, 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 announces 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. 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. We are including 18 brochures, one for each committee member and we thank you for your consideration. Sincerely yours,
Richard Darling, DDS Waldo Concepcion, M.D., FACS
[i]
http://www.dhs.ca.gov/aids/Statistics/pdf/Stats2005/Feb05AIDSmerged.pdf
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