|Note: Publishers retain the right to alter the
submissions and Hepatitis Magazine chose to do that. Their new publication was
similar to the article we originally submitted, however they omitted the co-infection chart, footnotes and they
changed some text. Below is the original submission to Hepatitis Magazine.
Their version may be viewed
The Case for More
Hepatitis B & Hepatitis C
As a child, if your grandfather had slipped you $25 or $30 in crisp bills, you would’ve been elated. But what if he then turned to your sister and handed her $3,000? Would you have shouted, “That’s not FAIR!”? Without a doubt.
Believe it or not, if you suffer from hepatitis C (HCV) or hepatitis B (HBV) your government, via the National Institutes of Health (NIH), has handed you that measly $25-30 for research, and unfairly given each of your sisters – a.k.a. patients suffering from AIDS – a whopping $3,084.
In 1999, an ABC 20/20 television broadcast by journalist John Stossel,(i) with statistics from the American Diabetes Association, showed the NIH was spending $28 on each diabetic for research versus $2,400 on each AIDS patient – even though diabetes was killing more Americans than AIDS and breast cancer combined. Each patient with HCV had $10 spent on him or her for research (1999 statistics for HBV are not available). So what has happened since then?
Congress decided to double the NIH research budget and offer fifteen percent increases to the overall NIH budget yearly. However, when allocating the funds the NIH didn’t place emphasis on the plummeting death rate for AIDS and adjust the spending for AIDS and other diseases accordingly. Much like compounding interest, the spending differential that existed in 1999 increased greatly so now the NIH is spending $3,084 on each of the 950,000 estimated AIDS patients compared to $25 on each one of the 5.3 million Americans with HCV and $32 on every one of the 1.25 million HBV sufferers. This is especially disturbing when one realizes that the AIDS 2003 California death total of 318 (as of 10/31/04) in newly infected patients(ii) represents a 97 percent decrease while the rate of AIDS deaths in the entire USA has fallen well over 80 percent.(iii) That’s right, let’s hear you say it… “That’s not FAIR!”
The ADA/Stossel study addressed research allocations per patient for 1999. Let us look at the 2005 allocations budgeted per death for hepatitis C and hepatitis B versus AIDS and other major diseases.
$178,975 is now being spent per AIDS death versus only $10,833 and $8,000 per HCV and HBV death respectively. Further, the amount for AIDS doesn’t include the billions spent by pharmaceutical companies, the billions contributed by the fifty states or the cumulative billions raised by Hollywood and concerned citizens.
One of the most ironic consequences of the disproportionate funding by the NIH is the plight of the patient co-infected with HIV/AIDS and HCV and HBV. This is especially glaring since more AIDS patients are now dying of liver disease, with HCV and HBV as causative factors, than they are of the opportunistic infections that used to kill them.(iv) Clearly, there must be change at the NIH and research allocations must be adjusted to eliminate these gross disparities in funding.
In providing balance to my call for change in Congress and at the NIH, I present opposing viewpoints as follows: from the National Institutes of Health’s Director of Science Policy, Lana Skirboll, Ph.D. Her entire letter to me may be read at http://www.fairfoundation.org/nihletter.htm.
v “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 health crisis."
o What do global AIDS patients need? Not more research. They need the same things that have dropped the death rate 97% in California’s newly infected patients and over 80% in the USA, namely, what our government has promised: 15 billion for prevention education and the available medical treatment (HAART: Highly Active Antiretroviral Therapy). In addition, “harm reduction” policies should be widely instituted.
o The infection rate in the world as reported by the World Health Organization (WHO) is less than 1% in every country except Sub-Saharan Africa and the Caribbean.(v)
o Recent testing by the CDC in Kenya has shown that millions previously thought to have AIDS are free of the disease(vi) and The Boston Globe recently reported that several AIDS specialists believe the current estimate of 40 million people living with the AIDS virus worldwide is inflated by 25 percent to 50 percent.(vii)
o The organizations (UNAIDS & WHO) asking for 15+ billion dollars for global AIDS are the same organizations providing questionable statistics - a clear and unacceptable conflict of interest.
v “Your solution [distribute with emphasis on mortality, then morbidity, degree of suffering, cost to society, etc.] does not account for the …potential epidemic spread of an infectious disease.”
o Hepatitis B and C are infectious diseases and therefore, under her definition, they deserve more funding. Indeed, the flu (influenza) is also communicable and it kills over twice as many Americans as AIDS. NIH funding on the flu is 50 million compared to 3 billion for HIV/AIDS.
o Furthermore, is one to say that because prostate disease, heart disease and Alzheimer’s are not capable of being transferred to loved ones, they don’t deserve their fair and equitable amount of funding?
v “Drugs developed to prevent and treat AIDS-associated opportunistic infections also provide benefit to patients undergoing cancer chemotherapy or receiving anti-transplant rejection therapy.” …”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 This is the old “AIDS funding may help your disease” argument. Indeed, researchers deserve great credit for AIDS research that has coincidentally been found to help other diseases, such as HBV (Epivir) and HCV. However, all patients want an appropriate amount of research funds studying their disease. They only want what is fair – no more, no less. It is inappropriate to tell non-AIDS patients, including those with HCV and HBV, to attempt to survive off “the crumbs” of AIDS disease research.
v In response to my organizations criticisms of the NIH, Anthony Fauci, MD, Director of the NIH’s National Institute of Allergy and Infectious Diseases stated to Washington Times reporter, Joyce Howard Price, “Many AIDS victims are young.” Dr. Fauci said he saw a need to therefore “maintain” or even “accelerate” the large [AIDS] research budgets.(viii)
o Every death of a child is a tragedy, but they must be weighed fairly against other causes. The CDC reports the number of estimated AIDS deaths for children under the age of 13 in 2002 was 33, under the age of 24 was 233 and total reported deaths in all AIDS patients age 34 and younger totaled 2,024.(ix) Deaths in children from cancer, heart disease, SIDS and many other causes greatly outnumber deaths from AIDS.
We should all applaud AIDS activists. They deserve great credit for bringing massive attention to their disease in the 80’s and 90’s and this activism culminated with immense funding for AIDS. But with AIDS funding so disproportionate to that for HCV and HBV, it is time for Congress and the NIH to take a second look at the need for greater HCV and HBV research allocations.
Until the HCV and HBV communities rises up in anger at the state and federal levels over these unfair allocations for research on their diseases, the status quo will be difficult to change. Indeed, the major organizations behind all diseases not receiving appropriate funding (ALF, HFI, HBF, ADA, AHA, etc.) need to act in unison in demanding change at the NIH and from their legislators. Only then will this unfairness be reversed.
BIO: Richard Darling, DDS, 2003 National Public Citizen of the Year (NASW); President and CEO, The FAIR Foundation; Member, National Viral Hepatitis Roundtable; Founder of the Coachella Valley Hepatitis C, Liver Disease & Transplant Support Group; author, Coma Life, an autobiographical memoir of three liver transplants from hepatitis C.