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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.
High speed connection required. Please allow 30 seconds for
Downloading
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.
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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
78629 Bougainvillea Drive,
Palm Desert, CA 92211
E-mail:
FAIR@dc.rr.com
FAIR is an acronym for Fair Allocations In
Research. FAIR is fair.
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