Being Alive 1995 Mar 5: 3
The threat of mandatory testing for HIV infection is at our
door once again. Earlier in the epidemic, such threats targeted
gay men and evoked massive, coordinated and for the most part
effective campaigns to defeat them. This time the target is
women. Will the AIDS community mount a similarly massive
The context is the wish by many to separate people with HIV
into "innocent victims" and others. The "innocent victims"
deserve a lion's share of resources and an intense prevention
effort to reduce their numbers. The rest of us get what's left.
After all, we brought this plague on ourselves.
Foremost among the "innocent victims" are babies. In 1993, the
most recent year for which data are available, an estimated
7,000 infants were born to HIV-infected women. Assuming an HIV
transmission rate of 15 to 30%, about 1,000-2,000 HIV-infected
infants were born in the US that year. (While even one new HIV
infection is one too many, we should note that this number is
but a tiny fraction of the total, perhaps 2 or 3%. Where's the
commensurate concern for the much larger numbers of young gay
men, adult women or gay men of color who are newly infected
The specific trigger for the new calls for mandatory testing
was a research study. The study, known as ACTG 076, randomized
about 400 pregnant, HIV-infected women to receive either AZT
during pregnancy and labor (and their newborns to receive AZT
for several months after birth) or an inactive placebo. The
reported results (New England Journal of Medicine, November
1994) state that the women on AZT had a 67% lower risk of
having an infected baby than the women on placebo. The
researchers stated that about 25% of the women on placebo
passed HIV to their infants vs. about 8% on AZT.
Well before the report was published, depending only on
enthusiastic press releases, pediatricians, bureaucrats and
politicians leapt into action. A slew of proposals appeared
providing that women "at high risk" be "required," "counseled,"
or "strongly encouraged" to be tested for HIV in order that
those found positive could be "invited" to take AZT during the
rest of their pregnancy and labor. Though these proposals vary
in language and detail, they all amount to forms of coercion. A
mandatory testing proposal narrowly failed to pass the New York
State legislature last summer. It is being re-introduced in the
legislature which has since become more dominated by
conservatives - the kind who want government off their backs
and onto ours.
The Gingrichites in Congress recently pushed hard for making
mandatory testing a condition for communities receiving any
further federal funding for AIDS. Similar measures are being
avidly pushed at the local and state levels across the country.
Still, you might say, what's wrong with a little coercion if
it's for "the greater good of society"? We have a drug that
works, we have a population of mostly young and inexperienced
women who need guidance and we'll save the public medical care
system a lot of money. So they say.
The Problem With the Science
The 076 study is controversial and has been since its
inception. At the very least, it is being way overgeneralized
to apply to women far different from its selected study
population. The results may indeed indicate the possibility of
reducing risk of transmission for some women, but it is very
difficult at this point to separate wheat from the chaff.
The women in 076 started with relatively high T-cell counts
(the median was 550) and all had access to comprehensive pre-
and post-natal care. (In contrast, most low-income women whose
HIV infection might be newly detected in mandatory testing
would have neither high T-cell counts nor access to good pre-
and post-natal care.) The women on the study had taken little
or no AZT previously. Indeed, AZT would not normally be
prescribed for most of them.
At the time of publication, complete data on the HIV status of
the children were available for only 75 (about 20%). It is
necessary to test children repeatedly and as late as 12-18
months after birth to determine whether a positive antibody
test accurately reflects infection of the child. For the first
months of life, an infant relies on its mother's antibodies
which will reflect her own HIV infection.
The study claimed that there were no short-term adverse effects
of AZT on mothers or newborns. Even if this is true, what about
longer term effects? Though the study acknowledges the
importance of long-term follow up to monitor for late-appearing
toxic effects, most of us do not trust either the researchers,
FDA or manufacturers to aggressively seek and publicize such
information. It's not in the interests of the main players to
find problems later on after big resources have been committed
to marketing and new policies.
Anecdotal reports are accumulating of damage to the immune
systems or other organs of HIV-negative infants born to mothers
on AZT. While one cannot rely on these stories for policy or
decisions, there are enough of them to warrant both caution in
implementing a change in the standard of care and urgent action
to collect and investigate these reports.
A final major problem is the reluctance of the 076 researchers
to release all of their data for independent critical analysis.
Rumors of suppression of conflicts in the data-which may or may
not be true-abound in this atmosphere of secrecy.
All of us in the adult AIDS community want the full data badly,
and not only to criticize the study. We want to know for whom
AZT treatment is effective and safe! Contrary to the apparent
beliefs of the pediatric AIDS community, we are not "barbarians
at the gate" seeking to undermine their commitment to
preventing pediatric AIDS. It is plausible to us that for some
number of women who have not taken antiretroviral therapy
before, the reduction in viral load typical in the first months
of taking such drugs may indeed reduce the risk of
transmission. Yet AZT is toxic, its benefits are time-limited
and are being newly questioned all the time. (For instance, the
AZT arm of a study comparing AZT to ddI to AZT and ddI in
children was halted last month. The independent data and safety
monitoring board found that AZT was so ineffective in
preventing disease progression and the incidence of toxic side
effects was so unexpectedly high, that it would be unethical to
continue to give these kids AZT alone.)
We want the maximum possible information to help women decide
whether, for them, the risks or the expected benefits weigh
more heavily on the scales. We do not want to have the choice
even indirectly made for us based on inadequate information,
whether the subjective motivation of the "choice dictators" be
prejudice or ostensible beneficence.
The Problems With the Policy
It is very unusual for public health policy to be abruptly
changed on the basis of a single study, especially a
controversial one. Good public policy and good science know
full well that a single study will at best provide incomplete
information. The results may turn out different in a different
study group or under the actual conditions of real life of its
intended subjects. Studies of alternative approaches to risk
reduction must be considered as well.
For instance, a recently announced observational study of
African women by scientists at Johns Hopkins University found
that women with vitamin A deficiency gave birth to HIV infected
babies at a rate more than three times that of women with
sufficient dietary vitamin A. For those with adequate vitamin
A, the rate of HIV transmission was comparable to that of the
US women on the AZT arm of the 076 study. This doesn't
necessarily mean that giving vitamin A supplements will reduce
the risks of the deficient women to this level, but it surely
poses the need for such an intervention study (and this would
cost only pennies!). Another study from France found that
adequate prenatal care was associated with low rates of
maternal-infant transmission comparable to the AZT arm of 076.
Such a "rush to judgment" usually happens when there is a
hidden agenda. And I submit that that is exactly what's
happening here. For some behind the mandatory testing
proposals, the motivation is clearly malevolent. These are the
folks who don't like HIV+ people, don't respect women or who
want to minimize the public costs of HIV care by any means.
Others, including perhaps most pediatricians involved in AIDS
care, are motivated by a sincere belief that they want to do
"what's best for the children." A problem is that they tend to
believe they know what's best better than the mothers do. (In
fact, nearly all studies confirm the common sense axiom that
pregnant women, when provided with adequate information and
care, will make rational and compassionate choices for their
fetus or newborn.)
Why This Is a Threat to All of Us
Regardless of motivation, the move toward mandatory testing is
a serious threat to all of us. If we allow one part of our
community, pregnant positive women, to be subjected to
compulsion and intimidation in the name of "the greater public
good," all of us are at risk. As new studies come out promoting
the effectiveness of one treatment or another, what's to stop
the policy makers from deciding that everyone deemed "at risk"
be mandated or "strongly encouraged" to be tested so that they
can be "strongly offered" the new treatment in the name of
reducing public medical care expenditures?
After mandatory testing, effectively mandatory treatment is not
far behind. With the new policy for women, what will happen
when they refuse AZT? Will their other care or social benefits
be jeopardized? Will it be used against them in custody
disputes or proceedings in the criminal "justice" system? In
the worst case analysis, could it be used as evidence of abuse
or neglect of their unborn infant? Wouldn't be the first time.
In fairness, I should add that so far, most of the more onerous
proposals for mandatory testing have been beaten back. The CDC
has just released for a period of public comment "Draft
Guidelines for HIV Counseling and Voluntary Testing for
Pregnant Women." As a result of vigorous protests by the
ACT-UP Women's Network and other HIV+ women (plus a few men),
these guidelines are careful to stress that while counseling
should be essentially mandatory, testing and the choice to take
AZT should be voluntary.
Offering counseling about HIV and HIV testing is, of course, a
good idea in all health care settings. Mandatory counseling is
not, because it is merely the first step on the slippery slope
of coercion. (And if you doubt that it is to be made mandatory,
check this out. A memo dated January 20, 1995, from HRSA, the
Health Resources and Services Administration, the division of
the Public Health Service responsible for distributing Ryan
White and other federal funds for AIDS care, stated in boldface
type: "HRSA supports these PHS recommendations and expects its
maternal and child health, primary care, HIV, and health
professions grantees to implement them.")
Once again, if the politicians and bureaucrats can get away
with it among pregnant women, it will only embolden them to go
after others of us. Finally, the men of the epidemic owe
something to the women. From early on, untold numbers of
lesbians and other women have thrown themselves into activism,
into care of ill people, into prevention outreach that have
benefited hundreds of thousands of men.
Now the women are under direct attack. We men owe them a
vigorous response, not only because of fairness and gratitude,
but because an attack on one is an attack on all of us. As the
German Pastor Martin Niemoller said of the Nazis, "First they
came for the communists, and I said nothing, because I was not
a communist. Then they came for the Jews, and I said nothing,
for I was not a Jew. Then when they came for me, there was no
one left to protest."
Thus far, the response of men and male-dominated AIDS
organizations has been minimal. It has not been made a priority
of the national AIDS Action Council, for example.
Will it be different here is L.A.?: What You Can Do
First, get more acquainted with the issues and the facts if you
need to. Read the Fall 1994 and Winter 1995 issues of Women
Alive. Get a copy of the CDC's Draft Guidelines and the HRSA
memo from the Being Alive office. Call Nancy MacNeil of our
Women Alive organization at 310.313.5139. Call me at
310.854.0542. Ask your other activist friends.
Second, write the federal AIDS "Czarina" Patsy Fleming to say
that you oppose mandatory counseling or testing programs for
anyone. Write the CDC to oppose its guidelines in their present
form. Tell HRSA to stop trying to condition federal funding for
AIDS care on implementation of mandatory counselling or testing
programs in any way, shape or form.
* Patsy Fleming National AIDS Policy Coordinator c/o The White
House Washington, D.C.
* Dr. James Curran HIV Program Centers for Disease Control and
Prevention Atlanta, GA 30333
* Dr. Stephen Bowen, Associate Administrator for AIDS Health
Resources and Services Administration Rockville, MD 20857
Finally, talk it up. Make this attack on women and all of us
Topic A in discussions with your infected and non-infected
friends, in AIDS care waiting rooms and support groups, with
your care providers and AIDS service organizations. Our freedom
depends on it.