ddodell@stjhmc.fidonet.org (David Dodell) (05/27/91)
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J O H N J A M E S writes on A I D S
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copyright 1991 by John S. James;
permission granted for non-commercial use.
AIDS TREATMENT NEWS Issue #126, May 3, 1991
phone 800/TREAT-12, or 415/255-0588
CONTENTS: [items are separated by "*****" for this display]
Facing AIDS in Prison: Interview with Physicians
at Vacaville
Peptide T: Major Study Recruiting in Los Angeles
San Francisco: May 31 Overview of Hepatitis and AIDS
Conference in China
National AIDS Lobby Days, May 24 through June 3
AmFAR Grants for Community-Based Trials:
Letter Due May 23
Breast Cancer Demonstration May 12; Solidarity Growing
Among Cancer and AIDS Activists
***** Facing AIDS in Prison: Interview with Physicians
at Vacaville
by Denny Smith
Under any circumstances, coping with HIV infection is
difficult. But the challenge may be made easier with certain
privileges, such as financial mobility, or access to cutting-edge
research. Such privileges are not available to people living
behind prison bars.
Over the past several years, we have received many letters
from people with HIV in prisons around the country. Many have
questions about new treatments for a certain diagnosis, though
they may not have access to a competent HIV physician. In some
institutions people with AIDS must tolerate amazing neglect; in
others, the care is well-intentioned but hampered by apathetic
correctional systems or AIDS-phobic state legislatures.
HIV concerns are exacerbated by long-standing problems in
the penal system. We spoke to two members of ACT UP/Los Angeles,
which organized a demonstration at the California Institute for
Women in Frontera, in Southern California, last November to
publicize charges of poor medical care there. Although a number
of women held at Frontera are known to have HIV, the facility has
no licensed clinic to provide basic acute care, and no infectious
disease specialist on staff. At least five deaths at Frontera
are alleged to have resulted from neglect of prisoners needing
medical treatment. Not all of the deaths are connected with HIV
infection, but without dependable diagnosis and followup, inmates
with HIV in any prison are particularly susceptible to
misdiagnosis and inadequate treatment.
Under the California Department of Corrections, most male
prisoners who require ongoing medical care of some kind are
housed at the California Medical Facility in Vacaville, a few
hours northeast of San Francisco. Women are generally sent to
the California Institute for Women in Frontera. We were allowed
to interview three physicians who care for inmates with HIV or
AIDS at Vacaville: Jessica Clarke, M. D., Ph.D., Jan Diamond, M.
D., and HIV Director Germn Maisonet, M. D. Our thanks to Public
Information Officer Lieutenant Rita Montez for arranging the
interview.
Dr. Clarke is also a volunteer Clinical Faculty at the HIV
clinic of the University of California in Davis, and Dr. Diamond
is Medical Director of the HIV Clinic at Contra Costa County
Hospital. Dr. Maisonet came to Vacaville from East Los Angeles,
where he treated HIV and substance abuse in his private practice;
he was also the medical director of the Van Ness Recovery House,
and of the Minority AIDS Project.
By the end of the interview, we were impressed by the level
of professional care for inmates at Vacaville compared to what we
have heard about other prison facilities. We were also struck by
the depth of the personal concern of these physicians for their
patients, and their frustration with the endless obstructions
inside an institutional bureaucracy.
The final draft of this interview was edited by prison
officials, as required as a condition for the interview, and
certain remarks which addressed the level of HIV treatment at
other prisons, particularly during transfers between prisons,
were deleted.
* * *
DS: Are the three of you responsible for the medical care
for every inmate at this facility?
JC: We only care for those who are known to be HIV+. We
have at least 240 patients, and there are 90 beds for acute care
in the prison hospital. We do not see inmates who may have HIV
but are not identified. We estimate from previous seroprevalence
studies that there are now 4,000 to 5,000 HIV-infected inmates in
the prison system. But only 550 have been identified.
DS: Not everyone has been tested?
JD: Voluntary testing is available, but it has been very
patchy. There is disincentive for the inmates to ask to be
tested, because anyone found to test positive is segregated from
the mainline. And the prison administration knows that they do
not have the capacity to handle everyone who is infected, so they
are not eager to find out. For a long time the California
legislature wanted to institute mandatory testing of prisoners,
followed by quarantine of the infected, ostensibly to stop
transmission. But when AZT became accepted therapy for treating
asymptomatics, they quickly figured out how much it would cost to
really know who had the virus, and they dropped their push.
DS: What is the rationale for segregating the
seropositives?
GM: I think originally the prison system worried that
inmates known to have HIV or AIDS would be abused by other
inmates. But that period is long over.
DS: Now it sounds like an impediment to what you might need
to do for early intervention.
JC: And at other institutions that don't specialize in
medical care, the situation is worse, because if someone tests
positive, they'll be put in lockdown until they can be
transferred here.
DS: How discouraging when someone knows enough to want
early care for HIV. Is HIV treatment information available, at
least in print, to the inmates on the mainline?
JD: There is no formal library with AIDS treatment
information, but some inmates subscribe to various newsletters.
DS: At AIDS TREATMENT NEWS we get a lot of correspondence
from prisoners around the country, most of whom can't afford to
pay a subscription fee. Many of them would like access to a
common copy at their institution.
JD: We would love to have a treatment library that all the
inmates could use, but that's one of the many things we haven't
had time to do.
JC: We also don't have good copying equipment, or the staff
to make current copies of newsletters available. This is a
system-wide problem within the Department of Corrections.
JD: And yet if you compare the HIV-affected inmates here to
a comparable group of people "on the street," I think you'll find
people here are much more well-read and self-educated. They have
time, and they also talk among themselves about new treatments
and their T-helper cell counts.
DS: I understand that condoms are disallowed in California
prisons.
JD: Handing out condoms is illegal, because sex in prison
is illegal. And inmates are given a disciplinary report if they
are found with a condom in their possession. Yet everyone admits
that there is a tremendous amount of bisexuality and
homosexuality in prisons, and there is a lot of coercive sex, and
outright rape in prisons. Nobody snitches because there is
nothing more dangerous than being labeled a snitch.
JC: The inmates tell me you can manage to get condoms, but
that it's a lot easier to get heroin. For instance, they might
have to use the thumb of a latex glove as a condom. But they're
not supposed to have them even for conjugal visits with their own
wives. Inmates known to have HIV are not allowed conjugal
visits, period. They can have visits with their parents only,
not their romantic partners, siblings, or their children, which
is a right allowed to non-HIV-infected inmates.
DS: So everyone must endure this irony: people with HIV
are segregated for no medical purpose, and they cannot have
conjugal visits, while people who are not segregated but might
have HIV are having sex with other inmates unofficially, and
conjugal visits officially, and all without condoms.
JC: Exactly! It's total insanity.
JD: It's criminal.
GM: Another inconsistency is the inattention paid to
recovery programs for drug users. A lot of our inmates were
substance abusers when they were on the street, and they tended
to fit a profile of patients who did not show up for
appointments, who did not give reliable medical histories, who
could not pay the bills. And now they're here.
DS: Well, here they're a captive audience.
JC: They are more likely to stay sober, and to keep
appointments, although of course, they can get illicit drugs in
prison, and they have the right to refuse medical advice and
treatment. We have three inmates who do AIDS education for the
others, in English and in Spanish. We help them, but they do most
of the work on their own. We're working on the principle that
people listen best to their own peers -- they use a heavy prison
lingo that's hard for us to follow!
DS: It sounds like chemical dependency, which predates some
people's convictions and may follow them after parole, is one
rail of the track they've been on.
GM: For some it's the whole train. And the prison system
is enabling the train to continue down the same track.
JC: The only CDC-sponsored drug recovery programs for
inmates on the mainline are NA and AA. For those in HIV
segregated housing there are no programs at all. This
contributes to an overwhelming recidivism rate.
DS: Why doesn't the Department of Corrections recognize
dependency as a medical problem, appropriate for treatment at a
medical facility like this?
JD: It costs money, and in my opinion, the criminal justice
system sees a prisoner as someone to keep away from society, not
someone to rehabilitate.
GM: But it costs $23,000 a year to house a well, non-HIV-
infected inmate in California. Multiply that amount by 100,000
prisoners in the state's institutions. What if you gave that
money to someone on the outside? They could support themselves,
they could get into recovery groups, they could get psychotherapy
if they were battered children, or children of alcoholics, or
objects of sexual abuse. They could develop practical social
skills.
JD: But instead we keep them in prison, in infantilizing
situations where nothing is expected of them, everything is fed
to them; they wait in lines and they have no responsibility. If
handled differently, this could become a real window of
opportunity for many.
JC: Segregation even further limits prisoners with HIV.
They cannot access the few skill development programs available
to inmates on the mainline.
JD: Four fifths of identified HIV-infected inmates are
completely quarantined from mainline inmates, with little access
to job and educational opportunities.
DS: Are all the people you see symptomatic? What if an
inmate at another institution becomes symptomatic?
JC: Here we see anyone with HIV infection, whether they are
healthy or quite ill. Prisons not equipped with medical
facilities will transfer their sick inmates to us eventually, or
to a community hospital for urgent care.
DS: Do you have time to give your patients good care?
JC: No, we don't have enough time, really, to spend with
patients. We definitely need more staff -- we have so little
administrative support. We need more paroling backup, more
psychiatric backup, some secretarial assistance. Prisons are
chronically understaffed. Even if they wanted to hire some more
people, there aren't a lot of people eager to work here.
DS: Do you have access to any medications you want to
prescribe?
JD: We can prescribe pretty much anything we need to. And
we have as much access to investigational new drugs (treatment
IND) as physicians on the outside have. We are careful to avoid
anything that resembles biomedical research on prisoners, but we
certainly give treatment IND drugs to those who need it and who
have no other workable medical options.
DS: I have to tell you that a lot of our readers now in
other prisons tell us a different story -- they frequently can't
get the attention or medications they need.
JC: Oh, we're very familiar with those stories. We hear
them from prisoners transferred here from other places. Just
during a transfer, inmates tell us that they feel like lepers.
And transfers can be delayed a long time because there is limited
space here.
DS: Whoever is responsible for these policies must not be
plugged into the contemporary network of treatment information.
JC: On the street if you need attention from an HIV-
knowledgeable caregiver, you will probably head for the nearest
big city. But as a prisoner you have no such mobility. Prisons
are usually located well away from urban centers.
GM: At least here, they are guaranteed some level of HIV
care. Depending on the geographic location of a prison, the
resident physicians may or may not be familiar with treating HIV
and AIDS. The isolation of geography can limit the level of
expertise in a given institution.
DS: When you receive a patient from another facility, what
are some of the diagnoses you feel are neglected at other
prisons?
JD: At the top of the list would be checking serum antigen
for Cryptococcus. I have never seen it diagnosed properly at
another institution. Then it would be titers for Toxoplasma.
And more and more we are seeing active undiagnosed tuberculosis.
DS: Do you use prophylactic drugs very much here?
JD: Yes. We use fluconazole for fungal prophylaxis, and
have been for over a year. And of over 100 patients with very
low T-helper cells, none of them have developed cryptococcal
meningitis. For comparison, in patients transferred from other
prisons who have received no prophylaxis, cryptococcal meningitis
is one of the three most common opportunistic infections. And of
course, we try to prevent PCP. I don't prophylax against MAI
because I don't think it's useful.
DS: Vacaville has only male inmates. Are there medical
facilities for women prisoners with HIV or AIDS?
JC: The only facility in the state for women is in
Frontera, and it has very little HIV-specific medical care. I
think it's safe to say that just like women on the outside, women
in prisons are going to be the last people to be taken care of.
Most HIV care in California institutions happens here at
Vacaville, and I would like to see women be able to come here.
DS: When someone with AIDS is discharged from a hospital,
they ordinarily receive a sort of reorientation called "discharge
planning," to facilitate any outpatient care they may need, to
have prescriptions or financial benefits explained, or to have
future appointments arranged. What happens when someone with
AIDS is paroled from Vacaville? Do you do all the discharge
planning yourselves?
JC: We have no social workers to assist with an inmate's
release. We are regularly acting as social worker, psychiatrist,
and benefits counselor for our patients. Things can get very
hectic, too. Sometimes people get paroled without us knowing in
advance. We have had diabetic patients paroled without their
insulin, and patients with active tuberculosis paroled without
their TB medications. We have to ask inmates to tell us in
advance if they're about to be paroled.
JD: And unfortunately, people are by law automatically
paroled to the community where they were arrested. It's so
counterproductive. They can't start over somewhere new --
they're forced to return to the very environment where their life
grew out of control. When people are paroled, what they need is
a whole new life.
DS: Is there the possibility of compassionate release for
prisoners who are very ill?
JD: There are guidelines established for people who have
somewhere to go, and who supposedly have less than six months to
live. The Department of Corrections will say this is available.
But in reality, we're very frustrated with the amount of foot-
dragging involved with obtaining a compassionate release. We
make applications, we send letters, and maybe, maybe someone will
get out in a timely way. The only three inmates who have
obtained compassionate releases in the last three years died
within one week; one of them died a few hours after release.
DS: What about release to a hospice?
JC: I think one of the obstacles to releasing inmates to a
hospice is the mentality surrounding prisons in general. People
are in here because they're "bad," and must be reprimanded, and
they supposedly are not deserving of the caring and compassion
they'd get at a hospice.
DS: You've described many problems as apparently intrinsic
to the correctional system. What would change this systemic
inertia?
JC: Well, we're in a bureaucracy where it's very difficult
to get the staffing we need. Another problem is that there are
relatively few physicians willing to immerse themselves in HIV
care. At a lot of institutions, the resident doctors and nurses
have refused to even look at inmates with HIV needs. It's the
same problem on the outside, only worse in here.
GM: One out of every three African-American men in
California between the ages of 18 and 40 are involved at some
time with the prison system. Well over half of the patients we
see are men of color. Yet, poor people of color get better
medical care in prison than they do as free citizens in the
street.
JD: The key is prison reform. For instance, there must be
ways of dealing with nonviolent crimes other than spending
billions of dollars of our limited budget imprisoning people,
usually resulting in a permanent revolving door in and out of
prison.
DS: It must be oppressively daunting for people already
facing incarceration for much or all of their future to also face
the troubles of fighting HIV progression, or the trauma of full-
blown AIDS infections.
JD: Oh, we have one guy who survived a terrible bout of
cryptococcal meningitis, his first AIDS-defining diagnosis. His
mother came to California to visit but she died unexpectedly
before he saw her; then his ex-wife and his daughter both died,
we believe of AIDS. But he has maintained the most positive
attitude. He even takes care of other sick inmates. He's been
through all of this, and he's a joy to be around.
GM: There are people here who are decent human beings, who
have been through hell, and no matter what happens, they will not
be broken.
Prison Issues Resources
AIDS TREATMENT NEWS staffer Thom Fontaine has been
collecting prison-related information and letters sent to us from
people in prisons around the U. S. for over three years. He is
willing to send an information packet, including a list of HIV-
related periodicals, to any correctional facility that wants to
set up an HIV treatment library. Most inmates cannot afford
individual subscriptions to AIDS periodicals, and the resulting
lack of knowledge effectively constitutes a deprivation that can
lead to unnecessary illness and worse. Thom feels that every
correctional facility should take the responsibility to subscribe
to sources like the AmFAR Directory or AIDS TREATMENT NEWS or
Treatment Issues. If treatment information is uniformly
available, inmates and prison personnel can educate themselves,
and save lives and money by working cooperatively with
institutions on health concerns. Interested persons should call
Thom or leave a message at 415/255-0588.
At least three chapters of ACT UP are working on HIV/prison
issues. Following are the contact numbers we were able to
verify:
* ACT UP/Los Angeles, Prisoners With AIDS Advocacy Committee
United, 213/669-7301.
* ACT UP/New York, Prison Issues Working Group (ask for
Ioannis Mookas), 212/564-AIDS.
* ACT UP/San Francisco, Prison Issues Committee, 415/563-
0724.
The only national organization addressing the needs of
prisoners with AIDS is the American Civil Liberties Union. Judy
Greenspan is the AIDS Information Coordinator of the ACLU's
National Prison Project, and she has offered to facilitate
connections between people who would like to work on issues of
AIDS in prison. She cannot solve individual problems for
prisoners, but she can send them a packet of resource
information. Interested persons may call 202/234-4830, or write
to the ACLU National Prison Project, 1875 Connecticut Ave, NW,
Suite 410, Washington, D. C., 20009.
***** Peptide T: Major Study Recruiting in Los Angeles
by John S. James
A controlled trial of peptide T, an experimental treatment
which some researchers believe may be helpful in treating
neurological effects sometimes caused by AIDS, is now seeking at
least 150 volunteers. This one-year trial, jointly sponsored by
the U. S. National Institute of Mental Health and the U. S.
National Institute of Allergy and Infectious Diseases, will be
run at a single site, the University of Southern California
School of Medicine, Los Angeles County USC Medical Center. (For
background about peptide T, see below.)
For the first six months on the trial, half of the patients
will receive a placebo; the others, peptide T. But during the
final six months there will be no placebo, so everyone will
receive the drug. Peptide T will be taken by nasal spray; the
dose will be 2 mg three times a day.
Volunteers will be allowed to use any FDA-approved
medications for prevention or treatment of opportunistic
infections, and they may also continue treatment with AZT or
other antivirals if they are taking them when they begin the
study. Also, it is OK to start a new antiviral treatment after
the first six months. So that accurate data will be collected,
it is important that volunteers not use recreational drugs,
sleeping pills, or tranquilizers during the study, and refrain
from alcohol for 48 hours prior to the monthly appointments for
tests. And volunteers must not have taken drug treatment for a
psychiatric problem within four weeks of starting the study, or
have taken Prozac (a longer-lasting tranquilizer) within eight
weeks.
Because this study will look mainly for neurological and
cognitive improvements, it is seeking volunteers who are HIV
positive and have problems with concentration or memory (for
example, frequently losing keys or wallets, or forgetting why one
came into a room). Yet these symptoms must not be too severe,
because volunteers must be able to complete a battery of
neurocognitive tests (tests of mental functioning) in order to
enter the study, and these tests can be somewhat difficult for
anyone.
Participants may have any T-helper count. They need to have
enough fluency in English to take the neurocognitive tests used
in the study.
Exclusion criteria include frequent need for hospitalization
or other serious underlying medical problems, more than 10 KS
lesions, pregnancy, or current use of cocaine, heroin, or
marijuana. There are various scientific reasons for these
exclusions. For example, a person with serious KS will be likely
to need chemotherapy before the study ends, and chemotherapy can
affect performance on the tests used in this trial, and therefore
affect the data and the study results.
Each participant will require tests on three days at entry
to the study. No hospitalization or overnight stay will be
required; however, it is possible to stay overnight at the
medical center, for persons from outside the area who want to
avoid the cost of a hotel. Later, monthly visits (each requiring
about two and a half hours at the clinic) will continue for 12
months. Two lumbar punctures will be required -- one at entry
to the study, and the other at six months. (Special very fine
needles are used, to reduce the possibility of post-tap
headache.) And tests of the cerebrospinal fluid -- for syphilis,
cryptococcal meningitis, and toxoplasmosis -- provide the
participant with valuable diagnostic information. The six-month
appointment will also include a skin test, which takes 48 hours
before it can be read; therefore two visits, 48 hours apart, will
be required at that time.
Volunteers need not live in the Los Angeles area; however,
the study is not able to pay for their transportation. It is
important that those entering the study be able to stay with it
for the one-year period.
If this trial shows that peptide T is effective, then "best
effort" will be made to obtain it for the volunteers after the
study is over, until the drug is commercially available.
However, no guarantees of access after the trial can be given.
For more information about volunteering for this new trial,
call Bob Herr, at the University of Southern California Medical
Center, 213/226-4643.
Background
Peptide T has been controversial for years, but there has
long been consensus among knowledgeable researchers that the drug
appears safe. Originally it had been hoped that it would have an
antiviral effect by preventing attachment of virus to cells, much
like soluble CD4 was supposed to do. But (as with soluble CD4)
little or no antiviral effect was found. This disappointment
decreased interest in the drug among researchers and in the AIDS
community overall.
But though the drug did not appear to work directly as an
antiviral, many people who used it reported lessening of HIV-
related symptoms. And two small phase I studies found notable
improvements in neurocognitive test performance, and also in
constitutional symptoms (for example, weight gain and reduced
fatigue) in persons using peptide T. Because these trials were
small, and because they had no control group to allow direct
comparison between those using and not using peptide T, a larger,
controlled study is needed to confirm or disprove their results.
That is what the new phase II trial is designed to do. It is
intended to be a pivotal study of peptide T -- one that could
lead to drug approval -- in terms of neurocognitive endpoints.
Meanwhile, struggles continue to make peptide T accessible
to persons not in the trial who believe that the treatment is
important to them. An expanded access program, such as one for
ddI or ddC, certainly seems appropriate, especially for persons
with the neurocognitive symptoms for which peptide T seems to
have worked in the past. The most serious roadblock to such a
program is money, as no large pharmaceutical company is currently
developing peptide T; the two small companies most closely
involved could not fund a major program to provide the drug.
At a crucial meeting on peptide T at the National Institute
of Mental Health on March 8 of this year, agreements were reached
to continue providing access to participants in the phase I trial
now administered by the Community Research Initiative of New
England. However, this agreement does not cover participants in
another phase I trial, at the University of Southern California
in Los Angeles. ACT UP/Los Angeles is currently working to
negotiate such an arrangement; and they are trying to locate all
the participants in that trial. If you were in the earlier Los
Angeles trial of peptide T and are not already in touch with ACT
UP/Los Angeles, call them at the number below. [Note: The
principal investigator of the new phase II study, Peter
Heseltine, M. D., has arranged for participants in the old trial
to be included in the new one. Persons who were in the phase I
trial should call Bob Herr at the number above if they are
interested in entering the new study.]
In November 1990 it became more difficult than in the past
to buy peptide T in the United States, due to its changed legal
status when the FDA selected a manufacturer, Carlbiotech, to
provide the drug for the phase II trial now starting. An
arrangement was set up to grant case-by-case permission to
purchase the drug for personal use, and on March 8, the first
such permission was granted. We do not know whether or not this
system will in practice be feasible for others.
For information about how you can help in activist efforts
concerning peptide T, you could contact any of the following
people or organizations (partial list):
* The Provincetown Positive PWA Coalition, 508/487-3998;
ask for John Perry Ryan.
* ACT UP/Provincetown, 508-487-2063.
* ACT UP/Los Angeles 213/669-7301; or call Jim Jensen,
213/465-4549.
* Anna Blume, c/o Alternative and Holistic Treatment
Committee, 135 W. 29th St. #10, New York, NY 10001.
* ACT UP/Boston: call Rolf Erikson, 617/899-5847.
* Fred Nunley, message at ACT UP/DC, 202/728-7530.
For more information on peptide T, see AIDS TREATMENT NEWS
#22 (January 16, 1987), #34 (June 19, 1987), #84 (July 28, 1989),
and #119 (January 18, 1991). Note that our coverage has only
outlined parts of the complex, extensive, and controversial story
of this drug. Books could be, and will be, written about the
history of peptide T.
***** San Francisco: May 31 Overview of Hepatitis and
AIDS Conference in China
Misha Cohen, O. M. D., L. Ac., clinical director of Quan Yin
Healing Arts Center in San Francisco, recently returned from
Beijing, China, where she attended the International Symposium of
Viral Hepatitis and AIDS. Dr. Cohen will present an overview of
the results of the conference on May 31, 8:00 p.m., at Quan Yin,
1748 Market Street (near Valencia), San Francisco. She will also
show slides on the history of China and of traditional Chinese
medicine. A donation will be requested.
About 180 papers, mostly on hepatitis, were presented at the
Beijing conference, April 15 to 18, which was sponsored by the
Beijing Association of Integration of Traditional and Western
Medicine and by the Chinese Medical Association. Participants
came from all provinces of China, and from Japan, Singapore, the
Philippines, Taiwan, Hong Kong, Canada, and the United States.
The language of the conference was English. Most of the
participants were from Asia, where hepatitis is a major problem;
for example, that continent has about three quarters of the
world's cases of hepatitis B. Research, prevention, and treatment
of hepatitis in China are usually well ahead of practice in the
United States.
The large majority of the presenters were medical doctors
who, despite their Western training, also believe that Chinese
medicine is very important. Many of the papers concerned
laboratory work (such as virology), animal tests, epidemiology,
and prevention of hepatitis and AIDS; there were also
presentations on herbal formulas and other treatments. Dr. Cohen
presented papers on Chinese herbal medicine and on acupuncture in
the treatment of HIV infection and AIDS.
For more information on Dr. Cohen's May 31 talk about this
conference, call Quan Yin, 415/861-4964.
***** National AIDS Lobby Days, May 24 through June 3
One of the biggest obstacles to improvement in the Federal
response to the AIDS epidemic is the sense among many members of
Congress that their constituents do not care about AIDS. To help
overcome this problem, political and service organizations are
encouraging people from around the country to meet with their U.
S. Senators and Representatives in their home district offices.
When Congress is not in session, members and their assistants are
likely to be in their districts -- providing a good opportunity
for face-to-face citizen lobbying without the necessity of
traveling to Washington.
National AIDS Lobby Days, May 24 through June 3, has been
organized by ACT UP/DC and other ACT UP chapters, AIDS Action
Council, Gay Men's Health Crisis, Human Rights Campaign Fund,
Iowa Dignity and Equality Advocates, Mobilization Against AIDS,
National Association of People with AIDS, National Coming Out
Day, National Gay and Lesbian Task Force, and Project Inform.
The effort "is designed to bring out people with AIDS, HIV-
positive persons, gays and lesbians, families and friends,
activists, scientists, health professionals, social workers, etc.
-- in short the widest range of people who advocate a
compassionate Federal response to the AIDS crisis.
"In cities throughout the country, participants will visit
the district offices of their U. S. Senators and Representatives
to lobby for or against specific legislation. In addition, the
lobby days will be an opportunity for people denied SSI,
Medicaid, or entry to AIDS clinical trials to present their
personal stories to Congressional staffers."
For more information, call Robert Warnock, 202/328-8253, or
Michael Petrelis, 202/543-1070. Or write to ACT UP/DC, P. O. Box
9318, Washington, DC 20005, 202/728-7530.
***** AmFAR Grants for Community-Based Trials:
Letter Due May 23
The American Foundation for AIDS Research (AmFAR) will award
a maximum of eight Project Grants, of up to $100,000 each, for
clinical research projects at community-based clinical research
centers. A letter of intent to apply for these grants --
including an abstract of the proposed project, a biographical
sketch of the organization's executive director and of the
trial's principal investigator, and a list of participating
physicians -- is due at 5:00 p.m. Thursday, May 23, at the AmFAR
office in New York.
AmFAR will also award Operating Grants, but these are only
for research organizations already funded by AmFAR. (The Project
Grants are not restricted in this way.)
To apply, obtain instructions for submitting the letter of
intent from the American Foundation for AIDS Research, Community
Based Clinical Trials Program, 1515 Broadway, Suite 3601, New
York, NY 10036, 212/719-0033.
***** Breast Cancer Demonstration May 12;
Solidarity Growing Among Cancer and AIDS Activists
by Denny Smith
Obstacles to research progress, budget squabbles at every
level of government, and general dissatisfaction with the status
quo of health care are among the experiences shared between
activists dealing with cancer and AIDS. The number of women
diagnosed with breast cancer in particular in the United States
is growing, and so is the number of women who have decided to
bring their anger and frustration with public apathy to the
public. In the process they have made some medical and political
alliances with AIDS activists in New York and San Francisco,
alliances which could be crucial to long-range victories in
either camp.
One of every nine American women will face breast cancer in
her lifetime; 44,500 women are expected to die this year alone.
Those deaths, like so many deaths from AIDS, might be preventable
if an appropriate research and treatment agenda were in place.
Already, we have seen attempts of some researchers to set up
antagonistic relationships between different patient groups by
complaining that AIDS receives too large a portion of the
medicine budget pie. What we must insist is that the United
States can afford to increase the total medicine portion of the
national budget pie. Health care must become a "national
security" issue.
On Sunday, May 12, a coalition of organizations fighting
breast cancer will be marching on Sacramento, California, in what
is expected to be the nation's largest public mobilization to
address the subject thus far. For more information, interested
persons should call Breast Cancer Action, 415/922-8279. One
immediate goal of activists is to gain passage of H. R. 381, a
bill to earmark $25 million for breast cancer research. We hope
that this movement builds momentum to save lives, and fosters
self-empowerment among other patient constituencies.
***** Statement of Purpose
AIDS TREATMENT NEWS reports on experimental and
complementary treatments, especially those available now. It
collects information from medical journals, and from interviews
with scientists, physicians, and other health practitioners, and
persons with AIDS or HIV.
Long-term survivors have usually tried many different
treatments, and found combinations which work for them. AIDS
TREATMENT NEWS does not recommend particular therapies, but seeks
to increase the options available.
We also examine the ethical and public-policy issues around
AIDS treatment research and treatment access.
***** How to Subscribe to AIDS TREATMENT NEWS by mail
Send $100 per year for 24 issues ($100 for nonprofit
organizations, $200 for businesses and institutions), or $40
reduced rate for persons with AIDS or related conditions who
cannot afford the regular rate, to: ATN Publications, P. O. Box
411256, San Francisco, CA 94141. A six-month subscription (12
issues) is $55 for individuals or nonprofits, $110 for businesses
and institutions, or $20 reduced rate. For subscription
information and a sample issue, call 800/TREAT-12 (800/873-2812),
or 415/255-0588.
To order back issues, send $18 for issues #1 through #75,
plus the per-issue cost for each later issue you need. The per-
issue cost is $1 reduced rate, $2 individual or nonprofit rate,
and $4 for businesses and institutions (Note that issues 1
through 75 are also available through bookstores, at a retail
price of $12.95.) The back issues include articles on ddI,
compound Q, clarithromycin, azithromycin, fluconazole, AZT,
aerosol pentamidine, ganciclovir (DHPG), diclazuril, DHEA,
peptide T, passive immunotherapy, hypericin, and many other
treatments.
Outside North America, add $20 per year for airmail postage,
$6 airmail for back issues #1 through #75, and $.50 for each
additional issue. Outside U. S. A., send U. S. funds by
international postal money order, or by travelers checks, or by
drafts or checks on U. S. banks.
To protect your privacy, we mail first class without
mentioning AIDS on the envelope, and we keep our subscriber list
confidential.
Copyright 1991 by John S. James. Permission granted for
non-commercial reproduction, provided that our address and phone
number are included if more than short quotations are used.
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