Travel with FAIR .... to the American Diabetes Association Expo in Tampa, Florida Once again, similar to the  avalanche of new members who joined in Phoenix, Seattle, Las Vegas, LA, etc. we were uplifted by the great support we received in Tampa, Florida. To view many of these new FAIR members, simply click on the ADA logo to the left. One is truly a hero to all patients with kidney disease who are in need of, or have had, a kidney transplant. Join many health care providers and our President and CEO January 18th in Reno, Nevada as he presents "Ethical Issues in the allocation of research dollars and in America's organ-donor crisis" at the Nevada Hepatitis C Task Force's First Annual HCV Conference sponsored by the University of Nevada School of Medicine. More info & to register

Presidential NIH Research Budget Request Lavishes $$
on HIV while other diseases bemoan their fate

Although annual deaths from cardiovascular disease (heart disease + stroke + high BP) and cancer are 871,000 and 560,000 respectively compared to 16,000 for HIV/AIDS, in the President's 2008 NIH budget only one disease gets more than a $6 million increase--yes, the Institute that oversees HIV research will get $210 million more while the National Cancer Institute gets $9 million LESS, neurologic disorders and stroke get $3 million more, heart blood & lung gets $7 million more and minority health is cut down by $1 million. Oh yes, the Office of the NIH Director (OD) is receiving $47 million more than the National Cancer Institute. Click on the President for the sad numbers for each Institute on page 7 and here for a definition of each Institute.

President Bush vetoes increase in bio-medical research funding, education and job training

FAIR joined with over 600 organizations in recommending passage of the 2008 Labor, Health and Human Services and Education Appropriations Bill that would have provided more bio-medical research funding. The President's response: "Some of its wasteful projects include a prison museum, a sailing school taught aboard a catamaran and a Portugese-as-a-second-language program. Congress owes the taxpayers much better than this effort." The veto by President Bush lends ongoing credence to FAIR's call for re-distribution of existing bio-medical research funds from HIV to other illnesses. We all live with a budget; if there are no more funds available, we have to allocate our funds differently and the government must also use this technique and stop HIV favoritism.

FAIR's information popular on the web

How many people click on our website's links to find out more information on research disparities and the need for new organ-donor policies? We average 19,000 clicks per week by visitors to our website.

FAIR to NIH Council of Public Representatives and NIGMS new Executive Director

The Council of Public Representatives (COPR) is a federal advisory committee made up of members of the public, who advise the National Institutes of Health (NIH) Director. We congratulated the six new members with our letters requesting that they consider our position on fair and equitable funding as stated to the House and Senate Appropriations Subcommittees in which we call for redistribution of a portion of HIV/AIDS research funding to other illnesses. We also communicated same to the new Director of the National Institute of General Medical Sciences (NIGMS), Sally Lee, BA.

FAIR to National Cancer Institute Director and others..

We sent similar communications to the three scientists from the NIH who were awarded the distinction of American Association for the Advancement of Science (AAAS) Fellow, one of whom is the NCI Director, John Niederhuber, MD. We also communicated with the five new members of the Advisory Council of the National Institute of Neurological Disorders and Stroke (NINDS), with seven new members of the NIH Peer Review Advisory Committee, the Director of the NIH's National Heart, Lung, and Blood Institute, the Director of the NIH's National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the newly appointed Executive Director for Management of the NIDDK.

FAIR to Macy's CEO on HIV/AIDS

Macy's annual charity event featured HIV/AIDS and Hollywood's Liz Taylor. FAIR's CEO & Board of Directors respectfully requested that Macy's consider our testimony to the Senate and House Appropriations Subcommittees in formulating the focus of their future charity auction so that the favoritism for HIV/AID cease and other illnesses might be considered. To read of their auction and our letter, click on Macy's logo. To read Macy's response to FAIR, click here.

FAIR to MORE Magazine--Few women are at risk from HIV

More magazine featured Mary Fisher, whose speech at the 1992 Presidential convention vaulted her to prominence as an infected HIV patient. Mary's health is good today 17 years after her speech; however the MORE article gave the impression that all women are at risk of contracting HIV/AIDS. Nothing could be further from the truth as we wrote to MORE in a Letter to the Editor.

Need a liver biopsy without needle insertion?

Many physicians are now using a blood test, FibroSURE, to determine the degree of scarring (fibrosis) that a patient has suffered instead of the invasive insertion of a needle into the liver (picture at left). FibroSURE, is available for patients with hepatitis C, non-alcoholic fatty liver disease (NASH) and alcoholic fatty liver disease (ASH). More information on each disease and important lab/patient requirements

TOTAL USA HIV/AIDS Funding for your state?

FAIR is always grateful when our members provide very informative links for you. In this Kaiser Foundation link provided by Kitty Candelaria, who is one of America's more productive hepatitis C advocates as Executive Director of the National Hepatitis C Institute, you can see that the favoritism for HIV is not only in research funding, but also in funding for housing costs, medicines, etc.

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, Now it is 3,272. Find out how many for your disease by clicking here. For example, there are a total of only 2,932 clinical trials for Diabetes, 413 for Alzheimer's Disease, 505 for COPD, 439 for hepatitis C (many involving HIV&HCV) and for our Focus Diseases of the Month: Autism = 104 and Fibromyalgia = 133.

FAIR Joins effort for overall increase in research $$

In a major effort organized by the Committee for Education Funding and supported by the Ad Hoc Group for Medical Research, FAIR joined with over eight-hundred other national organizations in urging Congress to increase bio-medical research funding with our jointly signed letter.

Send a Get-Well Card today...for free

If you'd like to send a get-well card (or for any other occasion) to someone special today for free--a real card delivered by mail and ordered from your PC--just have your speakers on and click the "SendOutCards" logo. If you have any problems sending your card, call Dave at 802-839-0357 and he’ll gladly walk you through the system over the phone. (Note: FAIR has no financial association with this excellent service).

FAIR Members' Soapbox Alerts continue,

...this month to those suffering from orphan (rare) diseases like fibromyalgia and other non-AIDS illnesses such as autism. To easily send an alert today to President Bush, VP Cheney, your Senators and Representatives in support of fairer funding for orphan illnesses, click the Soapbox logo!

Focus Diseases:  Autism & Fibromyalgia (FM)

Autism

• What is autism?: Autism is a developmental disability (brain disorder) that generally appears between the ages of 15 and 20 months of age. Most patients then begin to lose speech, social skills and physical abilities and completely withdraw into a world of their own. Autistic children cannot perceive fear or dangerous situations, nor can they filter and ignore stimuli. They typically have a host of biomedical and neurological problems including chronic diarrhea because their intestines are so damaged that they cannot absorb vital nutrients, minerals, and vitamins. Liver and kidney functions are impaired, and immune systems are compromised and they cannot fight off simple infections.
   

• Autism is common: 1.5 million Americans and their families are now affected, making it more prevalent than AIDS as well as the following children's diseases combined: Down Syndrome, childhood diabetes, and childhood cancer.

• Autism is costly: The economic impact of autism is more than $35 billion annually and expected to more than double in the next decade.
   

• Autism and treatment: There is no medical detection,
  treatment or cure for autism.
   

• Diagnosing Autism: There is no specific test that can diagnose autism. Several specialized screening methods have been developed that are now used in diagnosing autism. To see a description of several of these methods click here.
   

• Autism and gender: Boys are 4 times more likely than girls to have autism. If your child is diagnosed with autism, early intervention is critical to gain maximum benefit from existing therapies.
   

• Autism support: Find a local autism chapter or support group: Find the nearest chapter; find a support group, online at A or B
   

• Fairness? The NIH is spending only $72 on each patient with Autism in research versus $3,052 on each AIDS patient.
   

• Links, statistics and information from the Autism Society of America (their free e-newsletter is available here). Further help from the Travis LaBoy Foundation and Autism Speaks.

Fibromyalgia (FM)

•  Fibromyalgia is a chronic pain illness characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances.
   

•  Fibromyalgia symptoms and suffering:
  
  1) Pain-The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
  
  2) Fatigue is an all-encompassing exhaustion that interferes with even the simplest daily activities.
  
  3) Sleep disorders that prevent them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the time they spend in deep sleep.
  
  4) Other Symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.
   

• FM and diagnosis: Currently there are no laboratory tests available for diagnosing fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination. It is estimated that it takes an average of five years for a FM patient to get an accurate diagnosis. Many doctors are still not adequately informed or educated about FM. Laboratory tests often prove negative.
   

• FM is where? The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected.
   

• FM is not caused by any action on the part of the patient such as drinking alcohol or harmful behaviors.
   

• Fibromyalgia discriminates: 5-7% of the US populations have it and it affects a higher percentage of women than men. It can also strike children.
   

• Fibromyalgia treatment: One of the most important factors in improving the symptoms of FM is for the patient to recognize the need for lifestyle adaptation with pain management, sleep management and psychological support to help with the suffering. Complementary therapies can be very beneficial. These include: physical therapy, therapeutic massage, myofascial release therapy, water therapy, light aerobics, acupressure, application of heat or cold, acupuncture, yoga, relaxation exercises, breathing techniques, aromatherapy, cognitive therapy, biofeedback, herbs, nutritional supplements, and osteopathic or chiropractic manipulation.
   

• FM and Prognosis: According to the National Fibromyalgia Association, most patients do tend to improve over time. By actively seeking new information, talking to others who have FM, re-evaluating daily priorities, making lifestyle changes, and working hard to keep a hopeful attitude, the FM sufferer can become the FM survivor!
   

• Making life with FM easier: books and brochures to make life with FM easier.
   

• An FM Survey: A recent informative survey by the National Fibromyalgia Association is available to view here. They recommend these seven steps to finding the correct doctor for your FM. Sign up to receive their free online newsletter with tons of information by clicking here.
   

• Fairness? The NIH is spending only $9 million dollars on Fibromyalgia in research in 2007 versus $2.9 Billion for HIV/AIDS as reported by the NIH here. That's not FAIR!
   

• Fibromyalgia 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.
   

• Support Groups for FM patients: Excellent groups providing a wonderful source of support and education for those who suffer from Fibromyalgia. Check for one in your state here.

Statistics and links from the National Fibromyalgia Association and the National Institutes of Health.

The FAIR Foundation is growing fast, but we need more members to change Congress and the NIH. Please help us by forwarding this Newsletter on to your associates and friends. With strength in numbers, we WILL achieve fair and equitable NIH distributions for Autism and FM patients and ALL non-AIDS diseases. Member sign-up information is confidential.  

 donate...

As you consider your year-end tax-deductible donations, we would be most grateful for your financial support. Please help us benefit all who need fair and equitable research allocations for their disease of interest and to achieve new organ-donor policies to reverse the organ-donor crisis in America. Indeed, we are the only nonprofit organization solely dedicated to fairness in research funding and we respectfully ask for your help in funding our effort. Remember, we have no paid employees. Indeed; we are all volunteers so every dollar of your donation will go to continuing our educating Congress and the NIH on the need for change to insure fair funding for your disease of interest. Thank you in advance for your generosity!  

Please make your donation on our secure website or mail a check made out to the FAIR Foundation at 78-629 Bougainvillea Drive, Palm Desert, CA 92211.

The FAIR Foundation; E-mail us at 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.