FAIR's Board of Directors Highlight December News  We are honored to announce three new members to our national Board of Directors, bringing the total number of Board members to twenty-nine. Melba R. Moore, MS, Commissioner of Health, St. Louis City Department of Health, St. Louis, Missouri; Member, Webster University’s Arts and Sciences Advisory Board, St. Louis Connect Care, and the Regional Health Commission; John F. Kennedy School of Government for State and Local Executives; 20 years experience in the public sector, management and executive leadership. John J. Fung, M.D., Ph.D., FACS, Chairman, Department of General Surgery; Director, Transplant Center, Cleveland Clinic Foundation. Past Chief Operating Officer, Thomas E. Starzl Transplantation Institute, Chief, Division of Transplantation Surgery and Director of Liver Services. Cleveland, Ohio Click here for full curriculum vitae  D. Leigh Aveling DMin., MFT, Chaplain: Loma Linda University Medical Center and Loma Linda University Behavioral Medicine Clinic; Adjunct Assistant Professor, Faculty of Religion, Loma Linda University. Loma Linda, California Ray Hill Honored in Houston Who is our Board member Ray Hill? Ray was one of this country's most strident gay, AIDS activists when confrontation was necessary to achieve their goals. Now, while still helping HIV/AIDS patients, he focuses on those with hepatitis C (HCV) because HCV is now killing more AIDS patients than AIDS is.  Ray was recently honored in Houston twice for his work--once by the ACLU and by Houston's gay community, yet again as their hero. Full story-click on Ray.

Illinois HIV/AIDS Deaths Plummet

Further evidence of the plummeting death rate for HIV/AIDS in America is the 2004 total for the entire state of Illinois. Indeed, the domino effect of prevention education, HAART (Highly Active Anti-viral Therapy) and Harm Reduction techniques (clean syringes) has resulted in a 93 (ninety-three) percent decrease to 100 (one hundred) deaths. Click the dominoes for more info.

San Francisco Dept. of Public Health admits to.....

FAIR previously reported on San Francisco overestimating HIV cases by 83 percent. Now they admit to including non-residents in their totals as well. Those totals resulted in large governmental Ryan White AIDS funding dollars for their city. Will they return some of it now? Click on the Golden Gate Bridge, > page 12 for their confession, then review the entire SF HIV/AIDS report with extensive statistics: e.g. the SF AIDS death rate has fallen 88 percent (Page 62) and of the 18,518 cumulative AIDS cases, 53 were in heterosexuals (Page 15).

FAIR in the Washington Post

Washington Post reporter Rob Stein brought to the public's attention a new NIH research policy and asked FAIR's President for our perspective. Read the full story here

Traveling with FAIR--to Chicago

FAIR's Founder gave presentations calling for fair and equitable research funding at the Georgia Doty Health Education Fund's "2005 Hepatitis & HIV Health Disparities Conference" in Chicago. Dr. Darling is pictured here with St. Louis Commissioner of Health and FAIR Board member Melba Moore at the concluding dinner. Click on them for more pictures of the event that featured author, activist and comedian, Dick Gregory.

Coma Life and FAIR in UNOS Magazine Book Review

UNOS (United Network for Organ Sharing) oversees all transplants in the USA. Author, heart-transplant recipient and noted book reviewer, Jim Gleason, wrote an in-depth review of our Founder's book, Coma Life, in UNOS's bi-monthly magazine, "Update." To read this excellent review, which references FAIR, click here.

FAIR Rebuts the Knoxville News Sentinel

Knoxville, Tennessee News Sentinel reporting led citizens in the Volunteer State to believe the disease is a major problem for all, including senior citizens. She even said, “trends of seniors using sexual enhancement drugs” and “of older men dating younger women” are “contributing factors to the rise of infection rates in the older community." Are seniors mirroring the sexual revolution of the sixties? We think not. Read our submitted rebuttal here.

FAIR Submits to the AASLD

The American Association for the Study of Liver Diseases (AASLD) recently held its annual convention. FAIR Board members Dr's Darling, Morse, and Concepcion submitted an Abstract entitled "MAKING THE CASE FOR INCREASED NATIONAL INSTITUTES OF HEALTH RESEARCH FUNDING FOR LIVER DISEASES." Although it was not chosen for presentation, we provide it now for your review. Click the microscope.

AIDS Researchers cited again--Potential
Conflicts of Interest

FAIR has reported on potential and real conflicts of interest in HIV/AIDS research before (see A and B). Dr. Paul Volberding, a well-known AIDS researcher and other AIDS scientists were recently cited in bothersome ethical issues. Specifically, the authors of the guidelines widely used to establish standards for prescribing medicines are often paid by the drug companies whose products they discuss. Full Story

The HIV/AIDS Clinical Trials Parade Continues

In May there were 1,742 HIV/AIDS clinical trials, in August, 1,865, in October 2,233, in December 2,308 for HIV/AIDS compared to 1,220 for diabetes, 199 for COPD, 251 for hepatitis C. Find out how many for your disease by clicking here.

See a recent "Soapbox Alert" for citizens suffering from cardiovascular disease (heart, stroke & hypertension), chronic obstructive pulmonary disease (COPD) and diabetes here and send an alert to President Bush, VP Cheney, your Senators and/or your Representatives today! 

West Nile Virus Deaths Plummet,
Scientists Uncertain as to Why

West Nile Virus (WNV) deaths have plummeted to 97 yet the NIH is spending $19,758 per WNV patient compared to $40 per cardiovascular disease and $3,084 per HIV/AIDS patient even though CVD kills 930,000 compared to an estimated 18,017 from HIV/AIDS. Read the full story of scientists confusion over the drop in WNV deaths by clicking on that pesky mosquito.

Focus Disease:  Alpha-1 Antitrypsin

• Alpha-1 Antitrypsin Deficiency (Alpha-1) is an inherited condition characterized by low levels of a protein called alpha-1-antitrypsin (A1AT) that is produced mostly in the liver and found in the blood. The primary function of A1AT is to protect the lungs from a specific enzyme that can attack the lungs. Alpha-1 Antitrypsin Deficiency may result in serious lung and/or liver disease at various ages in life.  

• Alpha-1 Symptoms: shortness of breath, wheezing, chronic cough and sputum (phlegm) production (chronic bronchitis), recurring chest colds, eyes and skin turning yellow (jaundice), swelling of the abdomen (ascites), gastrointestinal bleeding (from large veins in the esophagus or stomach), decreased exercise tolerance, non-responsive asthma or year-round allergies, unexplained liver problems.

• FAIR Profiles Dave Courtney....Dave is a pre-lung transplant patient with liver illness due to his Alpha-1-Antitrypsin deficiency. As you see here, Dave needs oxygen to function, yet that does not stop him from traveling thousands of miles as VP of the Presumed Consent Foundation. We share his goal of fewer deaths in those waiting for organ transplants with the new organ donor policy of Presumed Consent. Dave is a member of the Public Policy Roundtable on Organ Donation Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and is President of the Texas Panhandle Chapter, Transplant Recipients International Organization (TRIO). He is an inspiration to all who meet him, and it is a privilege to have him as a member of our Board of Directors.

• Alpha-1 is serious and can lead to lung and/or liver transplant to continue life.  

• Alpha-1 and COPD: Alpha-1 is often misdiagnosed as asthma or Chronic Obstructive Pulmonary Disease (COPD). As many as 3 percent of all people diagnosed with COPD have Alpha-1.

• Should you be tested? The World Health Organization (WHO), American Thoracic Society (ATS) and the European Respiratory Society (ERS) agree: all COPD patients should be tested for Alpha-1. 

• Alpha-1 Support Groups: The Alpha-1 Association provides a link to support groups and you may access it here.

• Orphan Disease status: Alpha-1 is an orphan disease, which means that in comparison to diabetes, heart disease, etc. relatively few people have this illness  Because it is relatively rare, pharmaceutical companies do not engage in the necessary research because of the inability to produce their desired return on capital. 

• Alpha-1 and Research Funding? In its list of diseases and their research funding, our government does not even list Alpha-1. Alpha-1 and all other diseases except HIV/AIDS would receive larger research allocations under the FAIR Foundation's policies.

You have helped us grow rapidly, but we need more members to change Congress and the NIH. Please encourage new membership by posting this in chat rooms, Blogs, 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 Alpha-1 as well as ALL other diseases. 

The FAIR Foundation, 78629 Bougainvillea Drive, Palm Desert, CA 92211  
E-mail: FAIR@dc.rr.com

FAIR Mission Statement: The FAIR Foundation is dedicated to fair and equitable distribution of research funds by the government 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.