Announcements

** AZT Muscle Problems: L-Carnitine Study Recruiting

The Neuromuscular Diseases Section of the U.S. National
Institute of Neurological Disorders and Stroke (NINDS) is now
recruiting for a study of high-dose L-carnitine as a possible
treatment or preventive for AZT-related muscle problems.
Patients may be eligible if they are using AZT and
experiencing either fatigue, decreased endurance, or
weakness; these can be symptoms of AZT-induced muscle
toxicity. [Note: persons with HIV and nerve or muscle
disorders, whether or not they are taking AZT, may be
eligible for a separate NINDS study of a different treatment;
for more information, see the announcement below.]

This six-month study is being conducted at the National
Institutes of Health campus in Bethesda, Maryland, near
Washington D.C. All expenses are paid, except for the cost of
travel for the first trip to Bethesda to see if you qualify
for the study. (Lodging is paid for this first trip, and all
expenses are paid for later trips.) No insurance company will
be billed, and all information will be kept confidential.

There are no T-helper count requirements for this study. All
test results (including physical examination, laboratory
tests, EKG, echocardiogram, and muscle biopsy) will be
forwarded for the patient's clinical care.

This is a placebo-controlled study. At the end of the study,
if the treatment is determined to be effective, it will be
provided.

Background

L-carnitine is an essential nutrient, which is found
especially in muscle tissue. Deficiencies can cause muscle
and heart problems. A study published last year found low
levels in 72 percent of AIDS patients who were using AZT.1
Another study2 gave a high dose of L-carnitine for two weeks
to AIDS patients treated with AZT, and found improved results
of certain blood tests. The goal of the NINDS study is to see
if correcting an L-carnitine deficiency (if there is one)
could relieve AZT-related muscle problems.

Carnitine is sold in health-food stores and buyers' clubs.
But be sure to use only L-carnitine (not DL-carnitine, which
at one time was the only kind available there). DL carnitine
consists of a mixture of equal parts of L-carnitine and D-
carnitine. Only L-carnitine is active; and some people
suspect that D-carnitine might be harmful.

Better yet, if you can get your physician to prescribe L-
carnitine, you can be assured of getting the highest quality.
Some physicians will be reluctant, because this use (for AZT-
related muscle problems) is experimental and unproven at this
time.

References

1. De Simone C, Tzantzoglou S, Jirillo E, Marzo A, Vullo V,
and Martinelli EA. L-carnitine deficiency in AIDS patients.
AIDS. February 1992; volume 6, number 2, pages 203-205.

2. De Simone C, Tzantzoglou S, Famularo G, and others. High
dose L-carnitine improves immunologic and metabolic
parameters in AIDS patients. IMMUNOPHARMACOLOGY AND
IMMUNOTOXICOLOGY. January 1993; volume 15, number 1, pages 1-
12.

For More Information

For more information, call Edward J. Cupler, M.D., at NINDS,
301/496-9979.


** HIV-Related Nerve or Muscle Problems -- IVIG Study
Recruiting

A separate study of HIV-related muscle and nerve problems is
also being conducted at the Neuromuscular Diseases Section of
NINDS. This study is for patients with "inflammatory myopathy
and HIV-associated demyelinating neuropathy... We will
evaluate patients with neuropathic symptoms of numbness,
distorted sensation, or weakness starting distally and
progressing proximally."

This study is testing high-dose IVIG (intravenous immune
globulin) to treat these conditions. There are no T-helper
count requirements. It does not matter whether the patient is
taking AZT or other antivirals.

For More Information

For more information, call Edward J. Cupler, M.D., at NINDS,
301/496-9979.


** New York: Community-Based Aspirin Study Recruiting

A study of aspirin as a potential treatment for AIDS,
conducted by the Community Research Initiative on AIDS (CRIA)
in New York City, is now recruiting. The hope is that
reducing HIV-related inflammation might result in lower viral
burden. The principal investigator is Donald Kotler, M.D.,
Director of Gastrointestinal Immunology at New York's St.
Luke's Roosevelt Hospital Center.

The study will administer high-dose aspirin (4 grams,
equivalent to about 12 ordinary [325 mg] aspirin tablets per
day), plus 3 grams of Sucralfate as a buffer to help prevent
stomach irritation, for eight weeks. Volunteers will be
randomly assigned either to receive the aspirin, or to
receive acetaminophen as a control. Volunteers must be
asymptomatic, with no history of opportunistic infections,
and with T-helper counts of 50 to 350. They will be tested,
and need to have a detectable level of HIV plasma viremia (so
that the study can detect improvement by telling whether the
viremia is reduced). They must have a platelet count over
150,000, cannot have a history of peptic ulcer or bleeding
disorder, and must meet certain other inclusion criteria.
They may be using AZT, ddI, and/or ddC, but these are not
required. They cannot be taking NSAIDS (non-steroidal anti-
inflammatory drugs), and cannot have used more than 0.5 grams
of aspirin per day for any period longer than a few months.
There are also certain other fairly standard entry criteria
-- for example, liver enzymes not greater than five times
normal. A total of 46 volunteers will be enrolled.

Several different viral tests will be used: plasma viremia,
quantitative HIV microculture, acid-dissociated HIV p24
antigen levels, quantitative HIV RNA in plasma, and
quantitative DNA and RNA PCR on lymphocytes. (The plasma HIV
RNA levels will be measured by David Ho, M.D., director of
the Aaron Diamond AIDS Research Center, who is donating his
services to this study.) A total of 46 volunteers will be
randomly assigned to the treatment or control arms.

Persons interested in enrolling in this study can call Bette
Smith at CRIA, 212/924-3934.

Note: AIDS Treatment News first reported aspirin as a
possible HIV treatment in issue #109, August 17, 1990. As far
as we know, the CRIA study is the first formal trial.

Caution: Dr. Kotler noted, "Due to the possible risks of
serious gastrointestinal problems and severe bleeding
associated with aspirin use, particularly in people with low
blood platelet counts, patients are strongly recommended to
consult with a physician before beginning any sort of long-
term aspirin treatment."


** California: Breast Cancer Research, Needle Exchange,
Insurance Reform -- Calls, Letters Needed Before October
10

AB 478, an important bill to support breast cancer medical
research and education with a cigarette tax of 2 cents a
pack, is now on Governor Wilson's desk. Unfortunately, Wilson
may veto it if he does not hear from the public. Wilson is
concerned that any tax increase will offend conservatives --
and he is also under pressure from the tobacco companies.

Why is breast-cancer research important to people with AIDS?

* AIDS, cancer, rheumatoid arthritis, diabetes, and other
diseases involving the immune system, are more closely linked
than people realize. Any solid progress against one will
almost certainly help research on the others. That's why the
LIFE Lobby in Sacramento, which addresses AIDS and gay
issues, supports AB 478.

* This bill brings new money into medical research, from a
cigarette tax. It does not shift money around to pit one
disease against another.

* Coalitions between AIDS, cancer, and other organizations
are extremely important.

* Arguments that funding should be determined by experts, not
legislation, are understandable, but they do not apply here.
First, this bill is good on its merits. Second, the public
should be involved in mobilizing the political will to get
medical research funded -- not excluded from the process. The
experts cannot create the needed political will alone.

To support AB 478, call or write to: The Honorable Pete
Wilson, Governor, State of California, State Capitol,
Sacramento, CA 95814, 916/445-2864, or 415/703-2218 (San
Francisco office), or 916/445-4633 fax. (Better yet, get your
friends to call, call talk shows, or write to newspapers.)

Other AIDS Legislation

Other AIDS-related bills supported by the LIFE Lobby at this
time are:

* AB 260: Allows needle exchange in San Francisco.

* AB 1100 and SB 590: Insurance reform to stop "post claims
underwriting" -- insurance companies canceling policies of
people with AIDS or other chronic diseases after they start
to file claims.

* SB 670: Protect confidentiality of T-helper count test
results (sometimes used to discriminate when HIV-test results
cannot be used in California).

* AB 623: Set up licensure requirements of residential care
facilities for the chronically ill.

October 10 is the deadline for Governor Wilson to sign or
veto all these bills. He usually leaves the controversial
ones until the deadline is near.

Note

Grassroots organizing on medical research funding is urgently
needed. For example, no one told AIDS Treatment News that the
cancer bill was on the governor's desk; fortunately, we
happened upon it in a newspaper. This should be all over the
talk shows, all over the newspapers and newsletters, and all
over the phone lines to the governor.

What is needed is (1) organizations to put out timely,
credible, user-friendly action alerts, probably by fax
broadcast, to (2) local organizers who will call their own
phone lists and phone trees, of (3) people ready and willing
to respond. More people must get involved in making this
happen.