FAIR NEWSLETTER 

$ One-fifth of a Trillion Dollars $

The prestigious Henry J. Kaiser Foundation reports annually on health issues, including the extent of US spending on HIV/AIDS. At the present rate of spending for HIV/AIDS of 20+ Billion per year, in two years it will be appropriate to state that since its inception in 1981, total US funding for HIV/AIDS will approach one-fifth of a Trillion dollars or $200 Billion. Full Report (Adobe Reader required)

Hepatitis B Added to FAIR Lineup

The FAIR Foundation has added Hepatitis B (HBV) to its list of featured diseases that are receiving disproportionately low research allocations from Congress and the National Institutes of Health. The Centers for Disease Control estimates there are 1.25 million Americans with HBV and 360 (three-hundred sixty) million infected patients worldwide. See the graphics and the facts.

"AIDS and Fuzzy Math"

The FAIR Foundation's focus is fair and equitable research allocations within the USA for all diseases. However, exaggerations of world-wide AIDS statistics must be exposed because they lead to unfairly low emphasis on all other diseases in the USA, including the sixteen that kill over a million more Americans than AIDS annually. In this excellent expose by Attorney, author and journalist, Michael Fumento, he reports that the man responsible for California's AIDS surveillance program when the disease was first detected and who became chief of the UN's Surveillance, Forecasting, and Impact Assessment unit of the Global Program on AIDS, Dr. James Chin, states that he saw the agency was using an estimated range of worldwide cases that was far too high and that "this causes serious misallocations [of funds] between AIDS and other diseases ...."

Support this Hep C Funding Petition and Start One
for Your Disease of Interest

Hepatitis C activist, Lucinda Aaron, has started a petition that aims to bring attention to Bill Gates on the need to spend some of his vast wealth on to help hepatitis C patients. Presently, Gates is spending billions to help AIDS patients. The FAIR Foundation endorses this petition and recommends that you take a moment to add your name to it also. At this site, you can access the Petition Site Home Page and start a petition for your disease of interest. We will then publicize your petition here also.

Traveling with FAIR

FAIR Founder, Dr. Richard Darling, DDS, has been traveling, doing FAIR Foundation radio interviews and giving speeches with video and PowerPoint presentations in various cities. Follow the picture and audio trail as he meets and gives presentations to the Vietnam Veterans of America (VVA) in Fresno, as well as to other FAIR Foundation members in Palm Springs & Loma Linda, CA; VT; MA; NH, as well as his meeting with transplant recipient FAIR members, including PBCers Co-Founder Joan Dale, in Vermont.

Your Donation Counts!

Remember that every dollar counts in the fight for FAIR and equitable allocations of NIH research monies. All of the progress we have made in educating America on the unfairness of present research policy has been made possible by the generous support of FAIR Foundation donors. Please click here and help us change our government's policies to insure proper research allocations for your disease of interest. Your donation will be greatly appreciated by all.

Focus Disease:  Autoimmune Hepatitis
(AIH)

•  AIH is a long term disease in which the patient's own immune system attacks the liver causing inflammation (hepatitis) and liver cell death. It is not contagious.

•  AIH can be very serious: The disease is usually quite serious and, if not treated, gets worse over time and can lead to liver transplant. Researchers think a genetic factor may predispose some people to autoimmune diseases. AIH is not caused by any action on the part of the patient such as drinking alcohol or harmful behaviors.

•  AIH can cause great suffering: Symptoms can include an enlarged liver, jaundice (yellowing of skin and eyes from excess bile in the blood), itching caused by bile not flowing properly and entering the blood stream, fatigue, abnormal blood vessels (spider angiomas), fluid accumulation or edema, loss of appetite, nausea and vomiting, join pain and arthritis and thyroid problems may be present. Those with advanced liver disease may experience fluid buildup in the abdomen (ascites), osteoporosis (porous bone leading to fractures), severe bleeding from veins in the esophagus or gut, and confusion (encephalopathy) from buildup of toxins in the brain that are not being filtered by the liver. The development of cirrhosis (severe scarring of the liver) is the end result of AIH in those who do not respond to treatment.

• AIH Discriminates: Similar to July's Focus Disease, Primary Biliary Cirrhosis, women get Autoimmune Hepatitis more than men. 70% of the cases are in woman between the ages of 15 and 40, women like Debbie Delgado Vega who we profile here this month.
  Although suffering with AIH so badly she needed transplant, she founded the Latino Organization for Liver Awareness and has helped over 100,000 Spanish speaking patients throughout the USA.
  Debbie Delgado Vega
   

• AIH treatment: Treatment works best when the disease is diagnosed early. Two drugs are primarily used: a corticosteroid called prednisone reduces inflammation, and prednisone and azathioprine (Imuran) both suppress the patient's overactive immune system. Some possible side effects of prednisone are weight gain, anxiety and confusion, thinning of the bones (osteoporosis), thinning of the hair and skin, diabetes, high blood pressure, cataracts and glaucoma. Azathioprine can lower your white blood cell count and sometimes causes nausea and poor appetite.

• Transplantation? Over the long term, many patients develop cirrhosis despite having a response to treatment, and patients who do not respond to treatment will almost always progress to cirrhosis. 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 AIH. By working closely with a hepatologist (liver specialist), there is good reason to expect a favorable long-term outlook.

• AIH 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 increased funding.

• AIH Internet Support Group: An excellent group providing support and education for those who suffer from AIH is owned by FAIR member and recent liver transplant recipient Joanne Cathcart. See it here: Liver Support-L. Other autoimmune liver disease patients with Primary Biliary Cirrhosis may also get help at 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 posting this in chat rooms, internet support groups, and by forwarding it to your friends and relatives with your recommendation that they join free HERE. With strength in numbers, we WILL achieve fair and equitable NIH distributions for Autoimmune Hepatitis and ALL diseases. Member sign-up information is confidential.

Facts on AIH from the NIH (NIDDK), Medline Plus. Jackson Gastroenterology, Howard J. Worman, MD and Hepatitis-Central

The FAIR Foundation
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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.