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AIDS FOCUS
Living With AIDS
Services and Empowerment for PWAs
Critical Task for AID Atlanta
The typical rebuttal to any individual who's statements are critical of AID Atlanta focuses on
how much good the agency accomplishes, how many clients they have served or how
important the agency's services are to people with AIDS or ARC. However, it is precisely for
these very reasons that it is vitally necessary to scrutinize the current functioning of AID
Atlanta. The recent Robert Wood Johnson (RWJ) Foundation report offers the Board of
Directors of AID Atlanta an opportunity to examine key areas of the agency. Unfortunately,
the response of the Board at last Wednesday's meeting was generally to discount the
significance of the unfavorable feedback and the individuals who compiled the report.
At the AID Atlanta Board meeting, the RWJ Foundation was repeatedly compared to an
"accrediting organization" by Board Member Don Smith. Dr. Smith opined that AID Atlanta
needs to take this type of feedback "with a grain of salt". Accrediting organizations, however,
do not provide direct funding to organizations they review. There exists a basic difference
between accrediting agencies and funding organizations. Funding organizations have an
inherent obligation to investigate how their financial awards are being utilized and have the
option of discontinuing funding. Also, the content of the feedback offered by the RWJ site
review team does not lend itself to being taken with "a grain of salt", as Dr. Smith suggested.
Buren Batson, Executive Director of the agency, stated during the course of the meeting that the
individuals who conducted the site visit were "...a group of academicians who know nothing
about management" The individuals involved in the site visit may know nothing about
management but their credentials and reputations suggest that they are experts in evaluating the
outcome of management i.e. services rendered.
The issue of lack of minority representation on the Board was also addressed during the
meeting. It was stated that this seemed to be a problem for AIDS service organizations in other
cities. Nancy Paris, Vice President commented that she felt the lack of minority representation
on AID Atlanta's Board was "more reflective of Atlanta titan the rest of the country". The
meaning of this statement was lost to most of those in atlcndcncc. It could be interpreted in
many ways, few of which would encourage increased minority representation on the Board.
During the course of the evening, a Board member commented that there "...must be a lot of
powerlessness in being a PWA and we should listen to our clients". AID Atlanta recently
increased the number of PWA/PWARCs on its Board of nineteen voting members from one to
two. AID Atlanta must be willing to not only listen to their clients, but insure direct input by
actively soliciting increased PWA/PWARC representation on its Board. AIDS service
organizations in other cities have recognized the value of substantial PWA representation on
their governing boards and key committees.
There is, indeed, an initial sense of powerlessness in an AIDS or ARC diagnosis and routes
for self-empowerment seem limited by the current structure of AID Atlanta. It would seem a
primary goal of an AIDS service organization should be to foster empowerment for its clients
via active involvement at the policy-making level of the organization. AID Atlanta staled their
intention to establish a PWA/PWARC advisory committee to the Board last year, but the
committee still does not exist
AID Atlanta has indeed made major accomplishments in its relatively short history. Its staff
and volunteers are dedicated and caring individuals whose contributions are critically important
to the clients they serve. When people express hesitance to volunteer their time or money for
political reasons, I emphasize the importance of the mission of the agency. We must continue
to donate our money and our energy, but we must also insist on accountability and
responsiveness from the Board of Directors. It is evident that there are members of the Board
who are concerned with providing PWA/PWARCs with services and encouraging their
empowerment Others, however, continue to foster the sense of powerlessness our community
experiences in this epidemic.
- John Kappers
John Kappers is a PWARC, employed as personal director at a local hospital. He is involved
in several AIDS activist organizations.
Updates
AIDS Drugs
Updates
No breakthroughs were reported at the July
14 Atlanta conference on AIDS drugs but
there was promising unofficial word on a
National Institutes of Health (NIH) study
combining AZT and DDC and news that AL
721 is losing favor among physicians and
some persons with AIDS.
This second conference to update
information on experimental AIDS therapies
was held at Emory University's Woodruff
Auditorium and was led once again by
Atlanta physician-researcher Dr. James
Braude, who was joined onstage by Dr. Barry
Gingell, medical information director of the
Gay Men's Health Crisis, infectious disease
expert Dr. Carlos Lopez, and insurance
representative Dan Easton.
In the NIH study, persons taking AZT and
DDC on alternating weeks reportedly have
suffered no significant side-effects past the
40-week mark and are deriving the benefits of
both drugs. This is especially good news for
persons unable to tolerate the side-effects
sometimes caused by full-dose AZT, and of
strong interest to researchers seeking potential
early intervention treatments for persons
who's immune systems show signs of
declining into full-form AIDS as evidenced
by lowering T-cell counts.
In other AZT news, an ongoing study
suggests that persons receiving a half-dose of
AZT for nine months appear to suffer no
more infections than persons taking a full and
more toxic dose over the same period of time.
The study must continue for several more
months before meaningful conclusions can be
drawn, but the hope is that dose reductions
will lead to fewer side-effects such as anemias
and diminished white-blood cell counts.
Also, a follow-up study reveals that after 72
weeks, AZT still appears to reduce infections
and prolong life among some persons taking
the drug.
Evidence is now overwhelming that
Texas Lawsuit May Set
AIDS Care Precedents
aerosol pentamidine is a highly effective
prophylaxis against PCP in persons with
AIDS and others who's immune systems are
compromised (again as evidenced by T-cell
counts below 200). The efficacy of this drug
is one of the strongest arguments for persons
to know their antibody status and regularly
monitor the integrity of their immune
systems.
The efficacy of Dextran sulfate and
Antabuse remains inconclusive. But a New
Yoik physician following patients taking
Dextran sulfate alone and in combination with
other drugs reports rises (some of them
significant) in patients' T-cell counts.
However, this was not a controlled study in
which variables could be accounted for, and
the drug appeared most beneficial to persons
with T-cell counts above 250. The FDA has
recently approved further testing of Dextran
sulfate, though regrettably not yet in
combination with AZT.
Faith in A1721 as an effective treatment
for AIDS and ARC appears to be waning
among both physicians and some PWAs.
Word comes that the highly touted Israeli
study was apparently deeply flawed and that a
study of AL 721 in Munich concluded the
drug rendered no clinical improvement to
persons with AIDS.
Dr. James Braude reports that
approximately 25% of persons enrolled in
Atlanta's placebo-controlled Ampligen study
are experiencing rises in T-cell counts after
nine months on either drug or placebo.
Perhaps, one day, NIH will understand the
importance of studying this drug and others in
combination with AZT and DDC.
A major lawsuit over substandard care of
persons with AIDS in Dallas may establish
national precedents on whether indigent
patients have a right to health care.
Parkland Memorial Hospital, a large
county hospital comparable to San Francisco
General, treats over 1,000 patients with AIDS,
ARC or who are HTV-positive. Only one full
time and one half-time physician are available
to handle this patient load, which counts 700
patient visits per month. Typical AIDS
patients are persons who lost their jobs as the
disease progressed and exhausted their
savings, thus becoming indigent
The lawsuit brought by the Dallas Gay
Alliance and the American Civil Liberties
Union AIDS Project seeks to end these
practices:
• A waiting list for AZT. The cost of the
drug is not the issue because the AZT is
provided by a state program with federal
funds. But the hospital does not assign enough
physicians to monitor patients using the drug.
The lawsuit also names the University of
Texas Southwestern Medical Center, which
provides medical personnel-students,
residents, fellows and professors-for the
hospital. This medical school rotates its
personnel through all 132 of the clinics at
Parkland Memorial, except for one-the AIDS
clinic. This discrimination exacerbates the
shortage of physicians in the AIDS clinic.
The hospital admitted that in the one-
month period from April 7 to May 6,1988,
seven people on the AZT waiting list died.
These were patients for whom AZT was
medically prescribed but not available due to
hospital policy.
• Arbitrary denial of aerosol pentamidine
prophylaxis and treatment The hospital's full
time AIDS physician, after his recent
resignation, pointed out that pentamidine
costs the hospital about $100 per month per
patient, while each hospitalization for
pneumocystis costs the hospital $10,000 for
the average stay of seven days,
• Rationing of AIDS beds. Persons with
AIDS have been forced to wait for a rationed
AIDS bed until another patient is discharged
or dies, even though other beds are empty.
Patients ill enough to need hospitalization
have had to wait 12 hours or more for a bed.
The lawsuit was first filed in state court.
Judges in Dallas are assigned at random, and
a conservative judge was assigned to the case.
But even he ruled against the hospital, forcing
it to end the AZT waiting list, deliver aerosol
pentamidine, and end the AIDS bed control.
He gave the hospital 30 days to comply.
Then the hospital moved the case to the
federal court system. A moderate liberal
judge, with a reputation for being very
thorough and fair, had been assigned.
Recently the Dallas Gay Alliance has
asked the court for permission to change their
pleading to a class-action lawsuit, one which
would include 28,000 people and have a
wider impact The ruling on this motion is
pending.
-San Francisco Sentinel
- Terry Francis
Information on these and other drugs
are now available from numerous sources,
including the Gay Men's Health Crises,
Department of Medical Information, Box
274,143 WestTwenty-fourth Street, New
York City, NY 10011; and Project Inform,
25 Taylor Street, Room 618, San Francisco,
CA 94102. The toll-free national phone
number is (800) 822-7422.
The Atlanta Chapter
of the
National Association of People With AIDS
1132 W. Peachtree St.. 874-7926
meets the 2nd and 4th Thursdays of each month at 7:00 p.m.
Membership is open to individuals with AIDS or AIDS Related Complex
Next Meeting: August 11th