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We take this opportunity to express our deep appreciation for your generous pledge to the Bill and Melinda Gates Foundation. The FAIR Foundation is a national organization with thousands of members and supporters in every State and the District of Columbia. As members of the Board of Directors, we are overseeing communications to Congress and the National Institutes of Health with the FAIR Foundation’s goal of fairer and more equitable distribution of taxpayer supported research. Of particular concern is the funding for HIV/AIDS, a preventable disease, which is now receiving ten percent of the entire federal bio-medical research budget. We would welcome the opportunity to discuss our concerns with you in Omaha regarding these issues as they apply to your pledge to the Bill and Melinda Gates Foundation. Thank you for your consideration and with gratitude for your laudable generosity we are, Sincerely yours,
Richard Darling, DDS
Leonard J. Morse, MD
Lorenzo Rossaro, MD
Donald Hillebrand, MD
August 30, 2006 Mr. Warren E. Buffett Dear Mr. Buffett, Thank you for your response to our request for an audience as relayed by Margaret Lim. We appreciate and understand her comment that you have received “too many requests.” We would be most grateful and honored if you would examine the attached letter in lieu of our direct meeting. Sent to the Director of the NIH, Cc’d to President Bush and all Members of the Senate and House Appropriations Subcommittees and signed by our entire Board, it comprehensively states our concerns. As the years pass and you assess your investment towards improving global health via your most generous contribution to the Bill and Melinda Gates Foundation, we hope you will reflect back on Benjamin Graham’s words in Chapter 20 of The Intelligent Investor: “Diversification is an established tenet of conservative investment.” With such an approach, the Walter Lippmann quote in your Preface will be most salient here also in that you will “plant more trees [bio-medical research organizations] that other men [researchers] will sit under.”
With great respect and gratitude, we are, Editor note: This was
signed by Dr's Darling, Morse, Rossaro, Hillebrand and Berry as in the
initial letter.
Mr. Buffett's Preface to Benjamin Graham's book may be read
here. Included with the above letter to Mr. Buffett
and our brochure was our letter to the NIH Director Elias A. Zerhouni, M.D. RE: Fair and Equitable Research Allocations Dear Dr. Zerhouni, HIV/AIDS researchers and prevention advocates have
made great success against this illness in Such favoritism for HIV/AIDS has resulted in
disproportionately low research allocations for all For example, in comparison to the CDC’s estimate of
15,798 HIV/AIDS deaths, cardiovascular In addition, many
dozens of HIV organizations have communicated to Senators Specter and
Harkin While the above
statistics are associated with diseases that cause great mortality, it
should also
Regardless if the funding comparison
is measured utilizing “allocation per patient,” “allocation per
In response to our previous communications to
your office in which we offered objections to the · (Skirboll and Quantius) “I emphasize that disease burden includes more than a count of the number of deaths during a single year. NIH must also consider the incidence, severity, and economic costs of a disease as it judges the burden of a specific disorder, or we would never study chronic, non-life threatening conditions such as blindness, deafness, or arthritis.” o FAIR: We agree. Our recommended NIH Allocation Factors[6] mirror yours and include incidence, severity, and economic costs of a disease, but from our inception we have added anther to your list: if a disease is an orphan disease it shall receive additional funding. · (Skirboll and Quantius) “As you have repeatedly focused your premise t on (sic) the statement that "allocations are grossly biased towards AIDS" compared to other diseases, I would like to address that issue directly.” “You have chosen to use only deaths of Americans to determine your equation. To do so ignores the critical fact that AIDS is a global public health crisis that has already killed more than 22 million people around the world…” 1. FAIR: The key to global AIDS is well known, already exists and is the same solution that has dropped deaths in California’s newly infected patients 98 percent. It was well stated by Dr. Fauci stated many months ago when he was asked on CNN “What is the solution for global AIDS?” He did not say “more research;” he did say, “Prevention.” In President Clinton’s and CNN Medical Correspondent Gupta’s TV special, “The End of AIDS,” they and many eminent HIV advocates pointed out that the solution to global AIDS is primarily preventive education, providing the existing medications (HAART) and setting up infrastructures to deliver both. Research was rarely mentioned except in reference to vaccines, which I’ll discuss below. FAIR supports increased global efforts to provide prevention education, HAART and to establish health infrastructures to accomplish their distribution as well as the ABC health policies (Abstinence, Be faithful, and use a Condom) as advocated by Presidents Bush and Clinton. · (Skirboll) Your "proration" in that regard [prorating research dollars based on mortality] is problematic both in the numerator and denominator.” o FAIR: We agree. FAIR does not support the theory of “Proration” anymore, thus our name has changed from our early days as ProrateNIH to The FAIR Foundation. One of your allocation factors, that our recommended policies mirror, is “mortality.” However, we believe there should be a slight emphasis on mortality to prevent inverted situations whereby a disease that is killing relatively few accumulates excessively large research allocations. HIV/AIDS receiving one-half billion more than CVD when the latter kills almost a million more annually in the USA is just one example of this. · (Skirboll and Quantius) “The transmissible nature of HIV makes it radically different from non-transmissible disease such as heart disease and cancer.” o FAIR: If one is going to use the “infectious” argument, one should use it uniformly. As stated above, many dozens of HIV organizations have communicated to Senators Specter and Harkin that “HCV-related liver disease is now the leading cause of death among people with HIV/AIDS” in the USA, yet funding is only $25 per HCV patient versus $3,040 per HIV patient. The flu (influenza) kills twice as many as HIV every year, yet only $199 million is spent on the flu versus $2.8 billion on HIV. A disease like HIV being communicable does not justify disproportionate funding. Patient with diabetes, Parkinson’s, Alzheimer’s, orphan diseases, etc. should not be penalized because their illness is acquired congenitally or by environmental factors. The NIH places an inordinate emphasis on whether a disease is infectious, and this is especially true with its funding for HIV disease. · (Skirboll and Quantius) “AIDS research is actually basic science, which has been determined to be related to AIDS, but it may, in fact, benefit a myriad of other disease research areas.” “It may be of interest to you that development of combination therapy for HIV infection stimulated interest in utilizing combination therapy to treat hepatitis C virus (HCV) infection. Pegylated interferon, initially tested on HIV-infected patients with Kaposi's sarcoma, later was shown to be effective for the treatment of HCV infection. “ o FAIR: Note their statement—the funding for basic science is “…related to AIDS” and it “may” benefit other illnesses. The basis science referred to here has AIDS as its basis, not the many non-AIDS diseases that it may help. AIDS activists use that argument to me regularly, “Don’t complain about AIDS receiving billions more than other diseases because AIDS research may help those illnesses some day.” Indeed, HIV research helped produce lamivudine for HBV and Peg-interferon for HCV. Those researchers deserve great credit for these achievements. However; all non-AIDS patients, including those with the sixteen diseases that kill a million more than HIV/AIDS here in the USA, want the NIH studying their disease in a fair and equitable manner, no more and no less. It is not fair to ask a patient with a non-AIDS illness to wait for the ancillary results of AIDS research. The HIV researcher is not studying HIV to find a solution to Alzheimer’s—if it does, well fine—but his/her goal is to advance the drug achievements against HIV/AIDS. Give the Alzheimer’s researcher appropriate funding because he wants the Nobel Prize for achieving the solution for Alzheimer’s, not HIV. · (Skirboll and Quantius) “It has been declared a threat to our national security….” o FAIR: We would be most grateful for your providing examples of our national security being threatened by HIV/AIDS. Now that effective
medicines have been discovered, there are new arguments for the NIAID 1. “..many AIDS victims are young” (by Dr. Fauci[8]), 2. Women are greatly affected by HIV/AIDS,” and, 3. To produce a vaccine (by Dr. Fauci[9]). FAIR’s responses to these arguments follow: 1. The CDC’s 2004 Surveillance Report reports the number of deaths in children in the USA under the age of 13 to be eighteen and the number of deaths from ages thirteen to nineteen to be 48.[10] Sandra Burchett, M.D., M.Sc., an infectious disease specialist at Children's Hospital in Boston and an associate in pediatrics at Harvard Medical School states what is commonly accepted as fact now, "Children who are diagnosed with HIV infection early and receive treatment for HIV can live not just better, but truly healthy, normal lives." Furthermore, in the CNN special President Clinton stated, “No one who has it [AIDS] has to die.” Regarding the severity of global AIDS on children, we have addressed that issue earlier. 2. The number of deaths in American women from heart disease, lung disease, breast cancer, colon-rectal cancer and AIDS is 267,000, 68,510, 40,410, 27,951 and 4,138 respectively.[11] Clearly, HIV disease is not the most urgent threat to woman when existing treatment is provided. Again, regarding the severity of global AIDS on women, we have addressed that issue earlier. 3. FAIR would like a vaccine for HIV and many other illnesses, but before large sums of NIAID funding are allotted for that purpose, we should endeavor to find better treatments for other illnesses that have not achieved the basic goal of effective therapy. Furthermore, if a vaccine is developed for HIV, then what is it? It will be yet another preventive policy and billions more will be needed to pay for this new preventive policy when we don’t have the funding now to provide medicines and develop health infrastructures in Sub-Saharan Africa. As stated above, we already have the preventive and pharmaceutical solutions to HIV disease. An unrecognized
factor negatively impacting all non-AIDS diseases is the “compounding
effect” of We join with you and
the Ad Hoc Group for Medical Research Funding in urging more overall In the years of our
communicating with you, the FAIR Foundation (FAIR is an acronym for
“Fair You have shown great
courage as NIH Director. In your 2/2/05 speech to NIH employees I have listed the FAIR Foundation Board of
Directors [as cosignatories] on the following pages for Sincerely,
Richard Darling, DDS Each member of FAIR's Board of Directors with their signature was included with this letter. Editor note: Two edits have been added since this was mailed to Dr. Zerhouni. They are enclosed in [ ] brackets. [1] http://fairfoundation.org/quiz/quiz.htm [2] http://www.fairfoundation.org/thesixteen.htm [3] http://www.fairfoundation.org/factslinks.htm [4] http://fairfoundation.org/states/hiv-aids_deaths_by_state.htm [5] http://fairfoundation.org/specter_letter_hcv_in_aids_pts.pdf [6] http://fairfoundation.org/factors.htm [7] http://fairfoundation.org/fauci.htm [8] Op. Cit. Note 7 [9] http://fairfoundation.org/news_letter/2006/03june/aids_vaccine.htm [10] http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2004report/table7.htm [11] http://www.fairfoundation.org/news_letter/2005/january/womenandaids.htm [12] http://fairfoundation.org/news_letter/2005/10oct/fair_travels.htm [13] http://www.nih.gov/news/pr/aug2005/od-25.htm |
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