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The Lancet, Volume 364, Issue 9432, Page 409, 31 July 2004
doi:10.1016/S0140-6736(04)16748-2Cite or Link Using DOI

Richard Darling, President and CEO of the FAIR Foundation

Angela Pirisi Email Address
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While the 15th International AIDS Conference in Bangkok renewed fury among scientists, politicians, and activists about the failure to control the global HIV/AIDS epidemic, in the USA, a dissenter could be heard. Richard Darling, patient advocate and thorn in the side of the US National Institutes of Health (NIH) has a somewhat different perspective on the HIV/AIDS crisis. Darling's obsession is what he calls inequities in research spending by the NIH “that favour AIDS over all other diseases. Presently, AIDS is receiving 10% of the entire NIH research budget and that's disproportionate and unfair to all other diseases”, he grumbles. “More kids choke to death each year in the USA than die from AIDS”, he asserts. “For that matter, twice as many people die from the ‘flu each year, but it doesn't receive nearly as much funding”, he adds.
Following a car accident over 30 years ago, Darling's health drastically deteriorated after a tainted blood transfusion. He became infected with hepatitis C, and subsequently developed cirrhosis, liver cancer, hepatorenal syndrome, and myasthenia gravis; he had three liver transplant operations, became diabetic, and had a heart attack. He was in a coma for a week after his first liver transplant failed. He went on to become an advocate for liver transplant patients and an ardent supporter of organ donation. His experiences led him to found the Fair Allocations In Research (FAIR) Foundation, which campaigns for a change in the way that US medical research funds are allocated.
Darling complains that the NIH uses “emotional rhetoric” to justify “disproportionate spending” on AIDS research. He goes on to list other diseases that “deserve” a greater portion of funding, on the basis that they kill more Americans than does AIDS. According to the US Centers for Disease Control (CDC), 16 371 Americans died of AIDS in 2002. “Meanwhile, cardiovascular disease kills 950 000 Americans every year, and diabetes kills more Americans than AIDS and breast cancer combined”, says Darling.
However, the UNAIDS 2004 Report on the Global AIDS Epidemic stressed that high-income countries shouldn't be complacent about controlling HIV/AIDS. Their latest statistics show that after years of falling rates, infections are on the rise again in the USA, where 950 000 people are now living with HIV/AIDS, up from 900 000 in 2001. What Darling contests, though, is that AIDS in the USA causes more death and disability than many other diseases. It all depends on how you measure disease burden, which is where FAIR and NIH don't see eye to eye. Darling doesn't disagree with NIH's funding criteria, which weigh disease incidence, severity, and economic cost, among other factors. But his allocation model places more emphasis on mortality, since, he says, “the greatest degree of disability is death”.
Darling isn't alone in questioning how the NIH chooses to allocate its research dollars, given the recent Congressional enquiry and internal review. NIH Director Elias Zerhouni demanded that NIH employees disclose any compensation they receive from outside consulting to identify conflicts of interest. Darling says he'd like to see the same requirements for UNAIDS and WHO officials; he finds it unacceptable that “the organisations asking for $15 billion for global AIDS are the same ones that are providing the statistical estimates to justify such spending. Future statistical reporting should come from an independent agency.”
Lana Skirboll, Associate Director of NIH's Office of Science Policy, recently responded to Darling's criticisms with a four-page letter defending NIH's funding criteria. She charges that FAIR's formula doesn't account for either the international impact of disease or the potential epidemic spread of AIDS. Skirboll suggests that FAIR dismisses “the critical fact that AIDS is a global public health crisis”, destructive to communities around the world, and a threat to US national security.
Darling, however, doesn't agree. “UNAIDS, WHO, and the media would lead everyone to believe AIDS is destroying the world, which lends credence to more research money being spent in the USA on AIDS. The worldwide infection rate for AIDS, as reported by the WHO and UNAIDS, is less than 1% in every country except sub-Saharan Africa and the Caribbean.” Actually, the 2004 UNAIDS report shows that a whole continent can't be painted with the same brush, citing wide diversity in levels and trends of HIV infection in Africa. While six countries have HIV prevalence below 2%, it is over 20% in six others. In southern Africa, rates are over 17%; in Botswana and Swaziland they rise above 35%. But, Darling argues, what AIDS-ravaged countries need is not more research but access to the same things that have helped lower rates of infections and deaths in high-income countries, “namely prevention education and the existing, effective treatment”. Many delegates at Bangkok echoed his sentiments, such as Helene Gayle, President-elect of the International AIDS Society, who underlined the need to expand prevention and treatment efforts.
“Darling's purpose is to make everyone aware of the dichotomy in funding for preventable diseases compared to equally lethal and devastating diseases of obscure aetiology, especially malignancies and premature degenerative maladies”, says Leonard Morse, Chair Emeritus of the American Medical Association's Council on Ethical and Judicial Affairs and a FAIR board member. “The world must understand that although 38 million people are infected with HIV, AIDS is preventable.”
In the end, Darling says he is not interested in short-changing AIDS patients, nor does he want those with other diseases losing out. What he envisions is a group of representatives from both within and outside the NIH working to achieve a transparent and easy-to-understand process that is “fair and equitable”. “Americans with non-AIDS diseases do not want their future depending on the crumbs of AIDS research; they want the NIH studying their diseases. They only want what is fair for their disease, no more, no less”, he says.
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