FAIR NEWSLETTER 

Stunning NIH Policy Change

As the 1990's came to a close the previous National Institutes of Health (NIH) Director, Harold Varmus, MD, surprised all by instituting a policy change that allowed NIH officials to accept outside income. This had previously been banned due to the possibility of conflict of interest in decision making. Since its inception, The FAIR Foundation has questioned the role of outside income to NIH officials and the possibility that such outside income has biased NIH officials towards increasing AIDS funding. In this two part series of excellent reports by "The Scientist" reporter, Ted Agres, the new NIH Director courageous admits the NIH needs "drastic reform" and admits to "vulnerabilities in system." Identified conflicts of interest led Dr. Zirhouni to propose a reversal of Dr. Varmus's policy, and a few days ago Dr. Zirhouni has proposed a 1-year moratorium on outside income. The articles: one & two.

FAIR Calls for Investigation: AIDS & the NIH
Outside Income Arrangements

In a letter to House of Representatives Joe Barton, (R-Fl), Chairman of the House Committee on Energy and Commerce, James Greenwood, (R-TX), Chairman of the House Energy and Commerce Subcommittee on Oversight and Investigation, and to all Subcommittee members, The FAIR Foundation's President and CEO, Dr. Richard Darling, requested that the subcommittee, which is investigating NIH conflict of interest issues, specifically investigate the outside income of every NIH official involved in AIDS funding decisions as well as the consulting records obtained from all drug companies involved with the production, research or distribution of AIDS drugs both within the USA and globally. The purpose of such an investigation would be to clarify if outside income arrangements are partially responsible for the bias that has led to such disproportionate HIV/AIDS funding by the NIH. Read the entire letter here.

The Vice Presidential Debate & AIDS
A FAIR Request for Balance

The moderator of the Vice Presidential debate, Gwen Ifill (from PBS's "Washington Week in Review") chose to ask the Vice-Presidential contenders what they would do to fight a specific disease. Did she pick a disease that is killing most Americans? Did she pick a disease that is affecting most Americans? No, she chose AIDS. FAIR wrote Ms. Ifill and requested balanced representation for all diseases that are killing over a million more Americans than AIDS annually. Click here to read FAIR's letter, Ms. Ifill's questions to Vice President Cheney and Senator Edwards as well as Senator Edwards comment that the Kerry/Edwards team plans on doubling the amount spent on HIV/AIDS in Africa. Such a doubling would result in funding for HIV/AIDS in Africa that is greater than the total amount spent in this country for EVERY disease. The Ifill letter has been transmitted to the President, the Vice President, the Kerry/Edwards team, to hundreds of media outlets and to the moderator of the third Presidential debate, CBS's Bob Schieffer, in the hopes that he will avoid a similar error when choosing a focus disease.

Focus Disease: Cystic Fibrosis (CF)

•  Cystic Fibrosis (CF) is a disease that mainly affects the respiratory system (airways and the lungs) and the digestive system (stomach, intestines, colon and other organs involved in the digestive process). CF causes thicker-than-normal mucus that can lead to obstructions in the respiratory and digestive systems. In the respiratory system, the abnormal mucus obstructs airways and also creates conditions that lead to repeated infections in the lungs. In the digestive system, the mucus can obstruct ducts in organs involved in digestion. CF can interfere with the liver, the pancreas as well as other organs that are part of the digestive process. This makes it difficult for persons with CF to effectively digest food and absorb nutrients.

•  Cystic Fibrosis and occurrence: CF occurs in approximately one of every 3,200 live Caucasian births (in one of every 3,900 live births of all Americans). About 1,000 new cases of CF are diagnosed each year. More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene. An individual must inherit two defective CF genes -- one from each parent -- to have CF.

•  Cystic Fibrosis causes great suffering: People with CF have a variety of symptoms including: fatigue and exhaustion; very salty-tasting skin; persistent coughing, at times with thick, sticky mucus in the  lungs; wheezing or shortness of breath leading to extreme difficulty in breathing; an excessive appetite but poor weight gain.

• FAIR Profiles and Remembers a special lady....
  Rosemary Quigley was a highly respected and loved medical ethicist who wrote of living with cystic fibrosis and undergoing a double lung transplant. Read about this courageous woman and how she brought the much needed ingredient of "Hope" to others. Click here

• Cystic Fibrosis treatment: The treatment of CF depends upon the stage of the disease and the organs involved. Clearing mucus from the lungs is an important part of the daily CF treatment regimen. Chest physical therapy is a form of airway clearance done by vigorous clapping on the back and chest to dislodge the thick mucus from the lungs. Other types of treatments include antibiotics to treat lung infections, decongestants, bronchodilators (drugs that open airways congested with mucus) and anti-inflammatory drugs. Lung Transplants Increase Survival Of Cystic Fibrosis Patients By More Than Four Years.

• Cystic Fibrosis Care is available: The Cystic Fibrosis Foundation has 117 accredited care centers to help patients. To find one in your state, click here.

• Cystic Fibrosis & Stem Cell Research? Stem cell research can provide breakthrough treatments and cures for diseases and injuries that affect millions of Americans with cystic fibrosis, Parkinson’s Disease, diabetes, cancer, heart disease, multiple sclerosis, sickle cell disease, HIV/AIDS, osteoporosis, ALS, autism, severe burns and spinal cord injury.

• Fairness? The NIH is spending 122 million on cystic fibrosis in research versus almost 3 Billion on HIV/AIDS

• Cystic Fibrosis  & The FAIR Foundation: cystic fibrosis and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's recommended policies.

The FAIR Foundation is growing fast, but we need more members to change Congress and the NIH. Please help us by posting this in chat rooms, internet support groups, and by forwarding it to your associates, friends and relatives with your recommendation that they join free HERE. With strength in numbers, we WILL achieve fair and equitable NIH distributions for Cystic Fibrosis as well as ALL other diseases. Member sign-up information is confidential.

Facts on Cystic Fibrosis from the Cystic Fibrosis Foundation, Journal of the American Medical Association, National Organization for Rare Diseases (NORD), American Thoracic Society as reported in "Science Daily" and from the California Stem Cell and Research Cures Initiative Organization

The FAIR Foundation
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E-mail: FAIR@dc.rr.com

FAIR Mission Statement: The FAIR Foundation is dedicated to fair and equitable distribution of research funds by the NIH for all diseases, including the 16 that kill a million more Americans than AIDS. A disease’s mortality rate shall be given emphasis in determining allocations and other secondary factors shall be utilized to insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding.

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