do you know if they ever tested ampligen on gulf war vets with gulf war syndrome????
POTOMAC, Md., March 17 /PRNewswire/ -- The following was issued today by
RESCIND, Inc.:
Recent findings reported in the January 15, 1997, issue of the Journal of the
American Medical Association (JAMA) point to evidence that "up to 80,000 of
the approximately 700,000 Gulf War veterans remain ill with vague symptoms
that resemble Chronic Fatigue Syndrome." This brings the total estimated
number of patients suffering from such debilitating diseases in the United
States to over 600,000, including civilians and military patients.
"This new information validates what many of us have suspected -- that
Chronic Fatigue Syndrome (CFS) is a poorly understood disease that severely
disables large numbers of people from all walks of life," said Tom Hennessy,
Jr., President of RESCIND, Inc., a patient advocacy group that first linked
the two diseases on CNN's "Larry King Live" on May 4, 1991. "It makes it
even more critical to see more research -- more clinical trials and wider
access to investigative drugs. We want to see both military and civilian
patients have accelerated access to Ampligen, the best studied treatment to
date, which holds considerable promise."
Treatment For Patients Outside the United States
The only therapy for Chronic Fatigue Syndrome with confirmatory placebo-
controlled and open-labeled trials is Ampligen, a nucleic acid drug developed
by the emerging biotech company Hemispherx BioPharma in Philadelphia. The
drug is not approved in the United States, so most doctors must treat
American patients symptomatically. Patients with CFS suffer from many
symptoms, including fever, sore throat, painful lymph nodes, muscle weakness,
headaches, joint pains, sleep disturbances and cognitive impairment. This
chronic illness can continue for years, even decades, and patients often
become bedridden, suffering from pain similar to the pain of cancer and AIDS
patients in the last two months of life.
In Canada, Ampligen is approved under the Emergency Drug Release Program, and
in Belgium it is available to patients with cost recovery. In Belgium, a
clinical study recently reported at the annual scientific meeting of the
American Association for Chronic Fatigue Syndrome (AACFS) in San Francisco,
Calif., showed that approximately 80% of the patients treated with the
investigational drug Ampligen went back to work or to school six months after
the beginning of the treatment. These patients had been bedridden because of
CFS for between three and seven years prior to the beginning of the
treatment.
Only One CFS Patient Treated in the United States
In the United States, various clinical trial applications are pending before
the Food and Drug Administration (FDA), and physicians are filing for
individual approval for patients who do not qualify for formal trials. The
process is lengthy, and daunting for many physicians who are not equipped to
handle the necessary paperwork and numerous bureaucratic hurdles.
"The FDA still treats CFS patients as second-class citizens," said Sara
Oliver Millener, CFIDS Network, Greenville, S.C. "We do not receive the same
consideration as cancer patients, or patients suffering from HIV/AIDS or
Alzheimer's disease. They clearly do not understand the severe medical and
economic consequence of this disorder on an ever-increasing number of
Americans."
Millener, a CFS patient herself, recently facilitated the approval of the
first "Single Patient Treatment IND" for her friend Dr. Jonna Lannert of
Culver City, Calif., mobilizing elected officials, patient advocacy groups,
and health care providers.
"It took almost five hundred hours of telephone calls before the FDA even
reviewed the application for access to the investigational drug Ampligen,"
added Millener. "Dr. Lannert's case was desperate, so there was no choice
but to keep on trying, as her life was in the balance."
Dr. Lannert began treatment with Ampligen under the new protocol on March 6,
1997. Hemispherx, and Olsten Kimberly QualityCare, a major home- infusion
therapy company, made the drug, and at-home infusion, available at no cost.
"Now, at long last, there is 'a light at the end of the tunnel' for civilians
and disabled veterans united by a common goal," said Hennessy.
RESCIND, Inc. is a non-profit organization dedicated to repealing existing
stereotypes about Chronic Immunological and Neurological Diseases.
SOURCE RESCIND, Inc.
CO: RESCIND, Inc.
and.....
To Address Staggering Costs Resulting from Long-Term Disabilities
Suffered by Gulf War Veterans & Chronic Fatigue Syndrome Patients
GREENVILLE, S.C., April 2 /PRNewswire/ -- CFIDS Network, INC., a patient
organization, announced today that it has set up a series of meetings with
the Health and Human Services (HHS) and other departments of the government,
to press forward an initiative to study the investigative drug Ampligen as a
potential therapy for up to 70,000 Gulf War Veterans who suffer from symptoms
resembling Chronic Fatigue Syndrome (CFS).
"Our mission is to educate and support patients, health professionals and the
general public about the latest research and treatments for CFIDS and other
CFIDS-like (GWS, MCS, Fibromyalgia, etc.) illnesses," said Sara Oliver
Millener of the CFIDS Network, and a CFIDS patient for 18 years. "Recently,
we aggressively pursued one avenue in which patients with CFS can regain
their health and dignity, by making the drug Ampligen available to citizens
of the U.S. I find the theory that military patients with Gulf War Syndrome
(GWS) could respond to the same treatment as civilian patients with CFS/CFIDS
quite intriguing. However, this is not a new concept. It was first
introduced in 1991 by long-time CFIDS activist and patient, Tom Hennessy Jr.,
of RESCIND Inc. Tom has paved the way for this initiative with a great deal
of research, jeopardizing his own health for the sake of others," she said.
"Now the time is right, particularly since recent studies done in Belgium
have shown that 80% of patients who had been bed-ridden for years went back
to work or school full time six months after the beginning of treatment with
Ampligen."
The significance of these findings is monumental, considering that 70,000
military patients along with over 500,000 U.S. civilians are severely
disabled by these diseases to the point where they can no longer work. The
loss of these incomes to the U.S. economy is staggering, which translates
into a loss of yearly taxable income of over $22 billion -- based on a total
of 570,000 patients at a median annual salary of $38,000. Assuming 80% of
this patient population recovers after treatment with Ampligen, the increase
in productivity to the U.S. economy in the next ten years would be over $175
billion should they be treated.
"Accordingly, we believe that every effort should be made now to introduce an
effective therapy to our sick Gulf War Veterans to stop this long-term
illness. The CFIDS community has already experienced the negative effects of
this disease on patients, their careers, families and the Social Security
budget. Now is the time to keep history from repeating itself with our Gulf
War Veterans, their families and the Department of Defense budget," added
Millener.
The only therapy for Chronic Fatigue Syndrome with confirmatory placebo-
controlled and open-labeled trials is Ampligen, a nucleic acid drug developed
by Hemispherx BioPharma, a biotech company located in Philadelphia. The drug
is not yet approved in the United States, so most doctors must treat American
patients symptomatically. Patients with CFS suffer from many symptoms;
including fever, sore throat, painful lymph nodes, muscle pain and weakness,
headaches, joint pains, sleep disturbances and cognitive impairment. This
chronic illness can continue for years, even decades, and patients often
become bed-ridden, suffering from unrelenting pain similar to the pain of
cancer and AIDS patients in the last two months of life.
Anywhere from 5% to 20% of Gulf War veterans are seriously sick with a
CFS-like illness, including joint pain, bone crushing weakness and fatigue,
cognitive difficulties, skin rashes and at least twenty other "symptoms that
exactly mimic CFS," according to Dr. William Reeves of the Centers for
Disease Control and Prevention. Millener continued, "Coming from a military
family with a father who was a fighter pilot in WWII and the Korean War and
having a husband who is a Vietnam Veteran, I am well aware of the sacrifices
our military personnel make for our country. There is no doubt in my mind
that they are entitled to any opportunity for a definite treatment. Why
shouldn't our citizens, military and civilian, have a treatment program
available to them as the patients in Canada and Belgium do?" She also noted
that many American patients are too ill to travel abroad to obtain therapy.
Earlier this year, President Clinton approved a budget with an increase of
$27 million in additional funding for research and treatment of Gulf War
Syndrome. Concurrently, President Clinton and Hillary Rodham-Clinton stated
that "something happened to our soldiers in the Gulf, and we are going to
leave no stone unturned."
"Likewise, the CFIDS Network, INC. is dedicated to aggressively pursue all
avenues of treatment which will restore health and dignity to those suffering
from CFIDS and GWS. The knowledge that there is a treatment for these
illnesses just intensifies our initiative to gain 'conditional approval',
begin Phase 3 of investigational trials, and make Ampligen affordable for
each U.S. citizen who wants it," concluded Millener.
SOURCE CFIDS Network, Inc.
ST: Maryland
IN: MTC
SU:
03/17/97 12:23 EST prnewswire.com
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