Points of Interest on NIH Research Allocations per 2005 budget, updated 8/10/04

AIDS deaths from CDC estimated at 16,371 in 2002

Cardiovascular Disease kills 950,000 every year, yet receives over 1/2 Billion less than AIDS

The NIH is spending $3,084 on each citizen estimated as having HIV/AIDS

Diabetes kills more Americans than AIDS and breast cancer combined, yet the NIH spends only $80 on each  diabetic

Alzheimer's Disease kills 3.3 times more than AIDS, yet the NIH spends only $155 on each patient with Alzheimer's Disease

Prostate cancer kills 2 times more than AIDS, yet the NIH spends only $150 on each patient with prostate disease

Hepatitis C (HCV) kills 12,000, yet the NIH spends only $25 on each hepatitis C patient

Hepatitis B (HBV) kills 5,000, yet the NIH spends only $32 on each HBV patient

The flu (influenza) on average, now kills almost 2+ times more than AIDS

Parkinson's Disease death rate similar to AIDS yet the NIH spends $162 on each patient

COPD = 119,999 deaths in 2000 yet the NIH spends only $5 on each patient

West Nile Virus cases in 2003: 9,858 with 262 deaths. West Nile Virus research allocation is $4,361 per patient. 406 cases and 7 deaths in 2004

Total USA HIV/AIDS budget for 2005 totals 20 Billion. 13.4 Billion for care, cash & housing assistance for patients. (From Henry J Kaiser Foundation)

The infection rate for AIDS throughout the entire world is 1 percent or less except in two countries, Sub-Saharan Africa and the Caribbean

Monkeypox cases confirmed in the USA: 37. SARS confirmed cases: 8. Deaths: 0 Research monies  unknown. Press coverage:  disproportionate.

Statistical supporting links may be viewed here

Please take a moment to view our eminent  Board of Directors

Volume 2: Issue 11
 

 July 2004
 

FAIR NEWSLETTER 

The FAIR Foundation on National Radio

The President and CEO of The FAIR Foundation, Dr. Darling, will be interviewed July 5th at 2 PM EST by Cliff Kincaid, who is hosting  Chuck Harder's nationally broadcast show, "For the People." Cliff has appeared on the Fox News programs Hannity & Colmes and The O'Reilly Factor and was a guest co-host on CNN's Crossfire (filling in for Pat Buchanan) in the past. He serves as editor of the Accuracy in Media (AIM) Report. If taped, the interview will be played the following day. To find your radio station that will have this show (by Liberty Broadcasting) click here. The FAIR Foundation is apolitical and is committed to fair research allocations for your disease regardless of political persuasion.
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Congressional Panel Questioning NIH Priorities

From “The Scientist” Amid various investigations into allegations of financial conflicts of interest at the National Institutes of Health (NIH), a congressional panel recently questioned senior officials over how the agency sets priorities for conducting research. "The priority-setting process at NIH and its centers and institutes has drawn questions, God knows, from members of Congress, patient advocacy groups, and others," said Rep. Michael Bilirakis (R-Fla.), chairman of the House Energy and Commerce Subcommittee on Health.

FAIR Foundation President and CEO, Dr. Darling, contacted every legislator mentioned and has offered FAIR's testimony in addressing the need for change at the NIH.

 Exorbitant AIDS Funding to Continue

Health and Human Services Secretary Tommy Thompson recently testified before the US Senate Committee on Appropriations and stated “The FY 2005 total HHS budget will continue .. with the request for HIV/AIDS funding of $15 billion, or +31 percent over FY 2001 for both domestic and global HIV/AIDS prevention, care, treatment, and research activities.” … “that amount included $784 million for States to purchase medications for persons living with HIV/AIDS.” Compare that to your ability to get funding for your medications. Full story here.

CDC Cuts Hepatitis C Funding

From the California Department of Health Services: The Centers for Disease Control in Washington, DC received news of their anticipated $2 million budget cut from NCID (National Center for Infectious Diseases) and consequently will not be funding any Viral Hepatitis Integration and Intervention Projects (VHIIPs). The funding cut is being appealed by the Division of Viral Hepatitis, but they doubt it will prove successful.

Compare Support for Your Disease

What kind of support is there for your disease in your state? Compare it to AIDS. Click here, then scroll.

FAIR Adds Stem Cell Research

The FAIR Foundation has added Stem cell research, Regenerative Medicine, and somatic cell nuclear medicine (SCNT) to its list of diseases in need of increased funding by the NIH because they show great promise for lifesaving cures for patients with heart disease, cancer, Type 1 diabetes, Parkinson's Disease, ALS, Macular Degeneration, spinal cord injury, MS, Lupus, AIDS, neurological disease, and auto-immune diseases. See it Here

Become a FAIR Advocate with a Click:

With a simple click here, then a copy and paste, you can easily convey your displeasure with present NIH spending on your disease and send a prepared letter to President Bush and your Congresspersons. Don't hesitate; do it today!

Focus Disease:  Primary Biliary Cirrhosis
(PBC)

  •  PBC is a slowly progressing disease of the bile ducts inside the liver. In PBC, the bile ducts in the liver become inflamed, which causes scaring that eventually blocks and destroys the bile ducts. Bile, which is needed for digestion of fat in the intestines, is produced in the liver and leaves it through these ducts. When the ducts are damaged, bile builds up in the liver and damages liver tissue.

  •  PBC: There is no cure. The cause of PBC is unknown, but because of the presence of autoantibodies (an antibody acting against the tissues that created it), it is generally thought to be an autoimmune disease whereby the body starts attacking itself (the bile ducts). PBC is not caused by any action on the part of the patient such as drinking alcohol or harmful behaviors.

  •  PBC causes great suffering: Symptoms can include jaundice (yellowing of skin and eyes from excess bile in the blood), cholesterol deposits in the skin, fluid accumulation or edema, darkening of the skin, and tear and salivary glands may not function properly, causing dry eyes and mouth. Arthritis and thyroid problems may be present, and osteoporosis, severe bleeding from veins in the esophagus or gut, and confusion (encephalopathy) from buildup of toxins in the brain not filtered by the liver. The bones can become soft and fragile, leading to increased risk of fractures. Itching, frequently severe, and fatigue are common symptoms. Itching is caused by bile entering the bloodstream. The development of cirrhosis (severe scarring of the liver) is the end result of PBC.

  • PBC discriminates: Women get the disease 10 times more often than men. It usually begins between the ages of 30 and 60.

  • PBC treatment is directed at managing symptoms and slowing down liver damage. Transplantation is now a standard form of treatment for advanced disease. Liver transplantation is highly successful in patients with end-stage liver disease resulting from PBC. By working closely with a hepatologist (liver specialist), there is good reason to expect a favorable long-term outlook.

  • Fairness? The NIH is spending only $?????? million dollars on PBC in research in 2005 versus $2.9 Billion for HIV/AIDS. We say ?????? because the amount is so low, it is not reported by the NIH here. That's not FAIR!

  • Primary Biliary Cirrhosis is a perfect example of how The FAIR Foundation Secondary Allocation factors will insure increased funding. The Secondary Allocation Factors insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding.

  • PBCers USA & Worldwide Internet Support Groups: Excellent groups providing a wonderful source of support and education for those who suffer from PBC and other autoimmune liver diseases include the following: PBCers USA, The PBC Foundation UK, Canadian Liver Foundation, PBC Patient Support Network Canada (Both Canadian groups are presented in English and French), PBCers Group Europe (text in English and other languages).

The FAIR Foundation is growing fast, but we need more members to change Congress and the NIH. Please help us by telling your friends and family to join free HERE. With strength in numbers, we WILL achieve fair and equitable NIH distributions for Primary Biliary Cirrhosis and ALL diseases. Member sign-up information is confidential. In addition, please forward this Newsletter on to your associates and friends.

Statistics from Jackson Gastroenterology, National Digestive Diseases Information Clearing House; Howard J. Worman, MD. Photo from Jackson Gastroenterology.

The FAIR Foundation

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FAIR is an acronym for Fair Allocations In Research. FAIR is fair.


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