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Being Alive

Women Under Attack: It's Time for Action Now




 

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 counterattack? The Background 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 each year?) 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.



 




Information in this article was accurate in March 5, 1995. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.