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| The FAIR Foundation focuses on the need for fairer and more equitable research distributions for diseases in the USA. However, the UNAIDS, World Health Organization (WHO), NIH and AIDS activists continually speak of AIDS decimating the world and use that argument to argue for more research funding. What are the real facts? See the infection rate globally at less than one percent in every country except two here and read articles on the overestimation of AIDS cases by UNAIDS and WHO here. |
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July 21, 2007 Search ends with transplant for man La Quinta resident Richard Butler was in bad shape - "days from dying," his wife said. A 66-year-old father of two daughters and two stepdaughters, this former city planning commissioner and Rotarian, was suffering from cirrhosis of the liver. Butler's deteriorating condition meant he would eventually need a transplant. And, in June, that's what doctors told him. On June 21, he collapsed. Butler's wife, Marty, took him to Eisenhower Medical Center, which does not have a transplant center. She said doctors told her Butler was in the end stages of liver disease and nothing could be done to save her husband. After five days there, Marty said she took the initiative and had him transferred to Loma Linda University Medical Center, where doctors told her Butler was too ill - and too risky - for a transplant. Neither hospital would comment specifically on Butler's case due to doctor-patient confidentiality. A staff member at Loma Linda, however, put the Butlers in touch with Dr. Richard Darling, a dentist who's also president of the FAIR Foundation, which helps transplant patients. "He immediately told me: 'There's a little secret out there for getting an organ,'" Marty said. What Darling did was refer the Butlers to Dr. Donald Hillebrand, medical director of Liver Transplant at Scripps Green Hospital near San Diego. Butler was soon cleared for a new liver on July 11 and received it on July 15. While the first month is delicate, he's doing well and should recover, Marty Butler said. The switch to San Diego, both Marty and Darling said, saved Richard Butler's life. Darling, a former transplant patient himself, said transplant hospitals in more crowded regions have to compete with more patients for available organs, making those on their lists wait longer. "We do have a lot of demand here," said Stephanie Schmitz, a spokesperson for OneLegacy, a transplant center serving several counties, including Riverside. "When you look at the population, it's huge." Darling chooses his words carefully. He doesn't want to upset local doctors, but he's also "distressed at the large number of patients in our group who were told by valley physicians that death was inevitable with no possibility of a transplant." *** FAIR Editor note: to help reverse America's organ donor crisis, we urge you to support the effort for new organ procurement policies. Click here to do that. |
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Media items of interest as reported in FAIR newsletters FAIR's CEO appears on CNN to call for redistribution of AIDS funding and to rebut statements by Lance Armstrong that funding for cancer is not "fair." Here. The chief physician in charge of all USA AIDS research and $2.9 billion funding admits "...the scientific advancements that have been made in HIV [research] are breathtaking [with] highly effective drugs to suppress HIV to the point where what was a death sentence in the early eighties to now having patients who look and feel well, who are leading very productive, very gratifying lives..." Full story here. --An opinion editorial submitted to the Gannett newspaper in Palm Springs, CA by 80-year old FAIR member Phyllis Wit has created a heated debate regarding funding for cardiovascular disease, prostate disease, etc. versus HIV/AIDS. --Hepatitis Magazine courageously printed a FAIR Foundation article that highlights the great gap between AIDS research funding versus the dollars spent on hepatitis B and hepatitis C. --Fairness Requested from TV's "Survivor,"
"The Apprentice," and from Donald Trump
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Following a car accident over 30 years ago, Darling's health
drastically deteriorated after a tainted blood 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 organizations 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 etiology, 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. |
| In a stunning article published 6/20/04, Boston Globe reporter John Donnelly reports worldwide AIDS infections are now thought to be overestimated by as much as 50%. To view this important Globe report, click here. Recent studies in Kenya have confirmed millions of Africans previously thought to have AIDS are disease free. You may view the BBC story here. If the news organizations have taken the stories off their websites, you may view the stories on our site here. With correct and unbiased statistical reporting, proper emphasis can be placed on the diseases that are actually causing the most destruction both worldwide and in the USA. |
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Group targets disease funding Local advocates call for fairer allocations By ANNETTE WELLS, Staff Writer Heart disease kills nearly 60 times more Americans each year than HIV/AIDS, but a half-billion more in federal dollars fights HIV/AIDS. Local health officials say this is irresponsible on the part of the National Institutes of Health and they're urging change through the Fair Allocations in Research Foundation (FAIR). "There are 16 diseases listed above AIDS as far as killing more Americans each year, and yet they are all dwarfed by the amount of money given to AIDS research and AIDS support,' said Dr. Donald J. Hillebrand, associate professor of medicine and medical director of liver transplants at Loma Linda University Medical Center. Hillebrand is one of six Loma Linda University physicians and one of 27 physicians, nurses and disease advocates countywide who sit on the FAIR Foundation's board of directors. WHAT'S FAIR? "The initial response from people is that they may think we just want to take money away from AIDS research, and that's just not the case,' he said. "This isn't about one particular disease or any one group of diseases, it's about taking a fair approach to distributing research money.' Dr. Richard Darling, president and CEO of the FAIR Foundation, said that for each AIDS patient, the NIH spends about $3,000, compared to just $36 for each patient suffering from cardiovascular disease. "That doesn't include what the states are spending and what rich individuals like Elton John are giving,' he said. "Deaths from AIDS is a tragedy, just as death from any other disease is a tragedy, but the NIH is spending 10 percent of its entire research budget on this one disease. Even the flu kills 2 times more people than AIDS.' A February report by the federal Centers for Disease Control and Prevention shows that heart disease, cancer, stroke, chronic lung disease, accidents, diabetes and flu and pneumonia were among the leading causes of death in the United States. In 2002, cardiovascular disease killed 950,000 people nationwide while AIDS killed 16,371, federal statistics show. BURDEN OF ILLNESS Paul Williams, a spokesman for the institutes' HIV/AIDS division, could not provide The Sun with an expert to interview, but sent the paper four pages of comments on AIDS research and NIH priority-setting. The NIH does consider the burden of illness when considering research priorities, the group says. "Research and the NIH priority process are inherently dynamic. They develop and adjust to new public health challenges and opportunities. The distribution of funding for any year is but a snapshot of an evolving process,' the statement reads. "Once an emerging health problem is identified, the amount of disease-specific funding is largely determined by the state of science.' Since 1995, HIV mortality has decreased about 80 percent, but remains the fifth leading cause of death for people ages 25 to 44. Karlie Stanton, a press officer for the Centers of Disease Control's HIV/AIDS and sexually-transmitted disease program, said AIDS deaths have declined mostly because of treatments made available in the mid-1990s. "We still estimate that 850,000 to 950,000 people are living with HIV/AIDS today and that about 40,000 new cases will be reported each year. However, people are living longer and healthier lives with it.' In February, the CDC showed that 1,505 people died of AIDS in California, whereas 68,234 people died of heart disease and 53,924 died from cancer. FUNDING DECISIONS Hillebrand agrees that research has paid off for HIV/AIDS, but that it shouldn't continue to get all of the funding. Allocations should be based on impact of the disease, mortality and the number of cases, not on who receives the biggest lobby or who has the most celebrities as activists, he said. According to the NIH's report, disease burden includes more than a count of the number of deaths. It also considers incidence, severity and economic costs of a disease. Steven English, chairman of the Inland AIDS Project's board of directors, said he doesn't think AIDS research receives too much funding. "How many years have they been funding cardiovascular research? I hate answering a question with a question, but that's sort of the same answer people have been giving about breast cancer and prostate cancer,' he said. "People have been studying cancer for 50 years. If you took all the money given to cancer research and compare it to the money spent on AIDS, it would just be a drop in the bucket.' English said AIDS is an easy target because of its popularity, although people only started to understand it about 20 years ago. Like any new company just starting out, you have to put a huge financial investment into it, he said. Darling, who came up with the idea for FAIR after receiving a liver transplant, said experts also might argue that AIDS is a communicable disease as opposed to heart disease or diabetes. He said the fact that a disease isn't infectious doesn't mean it should receive a disproportionate amount of money for research. "The flu is infection. Hepatitis C is infectious and it is killing almost as many people as AIDS,' he said. "Yes, (AIDS) is infectious, but when you compare it to other disease, it doesn't warrant more funding than some of these other diseases.' Hillebrand and Darling want residents to ask their legislators to stop the favoritism toward AIDS. "If FAIR would have its effect, the need for organ transplant would be tremendously less. I might be putting myself out of work, but that's OK,' Hillebrand said. 3-9 |
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By Seth Borenstein December 18, 2003
Other diseases that grab headlines or have advocacy groups or celebrity spokespeople – such as AIDS, Alzheimer's or Parkinson's disease – kill far fewer people than the inseparable duo of influenza and pneumonia. But the National Institutes of Health spends between eight and 100 times more money researching those more prominent diseases than it spends for flu. This year the federal government is spending about $50 million on flu research at NIH and on tracking and fighting the flu at the Centers for Disease Control and Prevention, according to the U.S. Department of Health and Human Services. That's $100 million less than it spends on persuading people to commute in nonpeak traffic hours. The NIH spends on average about $700 per flu fatality. In contrast, it spends about $12,000 per Alzheimer's death, $14,000 per Parkinson's death and $158,000 per AIDS death. NIH spends $25 million a year on flu research, but it spends $79 million a year researching anthrax, which killed five people in 2001. Flu spending is so modest that it isn't listed on the NIH budgetary breakdown for disease spending. The Bush administration hopes to at least triple flu spending by adding $100 million, according to Health and Human Services Secretary Tommy Thompson. The problem, experts say, is that flu isn't new or sexy. "There's a battle out there over dollars. Certain diseases are not on the front burner because we're familiar with them," said University of Pennsylvania bioethics director Arthur Caplan. "We underspend on a variety of ailments that aren't glamorous, and flu is one of them." "It's always been this way," said longtime influenza researcher Dr. Edwin D. Kilbourne, a retired professor of immunology at New York Medical College in Valhalla. "One of the chief reasons is that people forget (about how bad flu can be) between epidemics. It tends to get confused with the common cold and trivialized." But the flu isn't the sniffles. It kills 36,000 people in the United States in an average year and in bad years – with this year predicted to be one – the U.S. death toll can reach 70,000. When a global pandemic – a widespread outbreak of a new strain – hits, the worldwide death toll could reach in the millions. The 1918 Spanish flu pandemic, which started in Kansas, not Spain, killed at least 20 million people worldwide, including about half a million in the United States. Deaths aren't the only toll, experts said. In an average year, flu also sends 114,000 people to the hospital, infects about 54 million Americans and costs the economy $12 billion. Flu is so prevalent and expensive that Medicare this year will spend $98.5 million on reimbursements to doctors and hospitals for flu-sick seniors. Dr. Martin Blaser, vice president of the Infectious Disease Society of America and chairman of the department of medicine at the New York University School of Medicine, blames the media and the public for flu's paltry budget. "The media pays attention to very dramatic sexy things like West Nile
and anthrax," Blaser said. Flu needs star power, he said, such as actors
Michael J. Fox for Parkinson's or Christopher Reeve for spinal-cord
injuries. |
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Judge Rules for HIV Patient in Transplant
By CHARLES SHEEHAN
The Associated Press
PITTSBURGH (AP) - An HIV-positive man in need of a liver transplant was
wrongly denied coverage under the state's Medicaid program, an
administrative law judge ruled.
William Jean Gough's liver is deteriorating because of hepatitis C. The
46-year-old was accepted as a strong candidate for the lifesaving
operation in August by Pittsburgh's Thomas E. Starzl Transplant
Institute.
The state Department of Public Welfare, which oversees the state's
Medicaid program, denied coverage for Gough, saying that infection with
the AIDS virus is a life-limiting condition that rules out a transplant.
In a ruling made public Wednesday, Judge Bernadene Kennedy dismissed the
state's argument, saying that scientific
advances allow people with HIV to live full lives.
Gough ``could live 10, 20, 30 years or more with a liver transplant,''
Kennedy wrote. ``Given his ability to successfully control his HIV,
the appellant may live a prolonged life and
maintain quality of life equivalent to non-HIV transplant patients.''
The judge expedited the case because Gough's condition worsens by the
day and he could be ineligible for a transplant if his liver
deteriorates too much.
Doctors said the Altoona man could die in nine to 12 months without a
transplant. The average wait is six to 12 months.
``I've struggled with this disease for many years and you've got to have
hope,'' Gough said Wednesday. ``I just think it's a lack of education in
our health care system. It seems to me the state's working off of old
criteria.''
The Department of Public Welfare will not appeal the judge's ruling,
spokeswoman Stephanie Suran said.
It is the second time in two months that Lambda Legal, a gay legal
rights group, has successfully argued that patients with HIV should not
be excluded from transplants just because they are HIV-positive.
In October, Kaiser Permanente, one of the nation's largest health
maintenance organizations, approved a kidney transplant for an
HIV-positive man in Denver, reversing an earlier decision. The HMO
initially refused John Carl's request for a new kidney, saying a
transplant on someone with the AIDS virus is too risky because drugs
used to prevent rejection of a new organ can jeopardize their already
weakened immune systems.
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Wees.
A spa supervisor at the Marriott Desert Springs Resort, Van der
Wees was rushed into the emergency room at Eisenhower Medical
Center with cirrhosis of the liver. 
