OTI Online
Volume 10, 1988

HIV-POSITIVE WOMEN HAVE RIGHTS TOO
and They're Often Denied
by Barbara Santee, Ph.D


AIDS and reproductive rights. Many people do not see the connection between the two issues, but there is one a very strong one and we must be prepared to confront the challenges which will be thrown at reproductive freedom in the guise of "protecting the public good from the threat of AIDS."

Although women will be more impacted in many ways as the epidemic spreads, a major area of concern is that of reproductive rights. We've already heard expressed in the media the opinions of earnest individuals who even now are advocating that HIV positive persons should be tested, tattooed, quarantined even incarcerated against their wills. If carried one step further, this same rationalization can be used to justify laws forcing infected persons to be sterilized against their wills or coerced into having unwanted abortions.

This is not unwarranted speculation. We're familiar with cases of wholesale sterilization abuse of women who were forced to consent to the procedure before an abortion would be performed. Today, in 1988, many women are being forced to undergo unwanted court-ordered cesarean surgeries, some even performed contrary to the advice of their own obstetricians. Additionally, attempts are being made to prevent women from obtaining abortions because the men involved do not approve. One can add to this the parental notification statutes in 10 states and parental consent statutes in 14 states. These often legally-mandated actions carry rape beyond the vagina to the uterus.

As the AIDS epidemic spreads and hysteria mounts, will we soon hear the public outcry that HIV-positive persons be involuntarily sterilized by court-order? Or legally coerced into unwanted abortions? It is a frightening, but all too real prospect, especially when the appeal is made to a middle-class public not yet personally touched by the epidemic a middle-class which has lost patience with the high cost of social and welfare programs, high taxes and exorbitant medical expenses. A sadly informed middle-class, some of whom believe this plague is a punishment sent by God for certain types of, what they consider to be, socially unacceptable behavior. Add to this that of the women with AIDS in New York, over 80 percent are women of color traditionally the victims of forced sterilization and we have a very dangerous threat to reproductive rights.

To date, the plight of women has been virtually ignored in this epidemic. Only recently have we seen information about the effect of AIDS on women, although women represent the fastest growing group of people contracting the disease. Women now represent eight percent of the total AIDS cases in the United States, but 10.5 percent of the mortality. The percentage of women who have been diagnosed with AIDS as a result of heterosexual contact has risen sharply, from 11 percent in 1984 to 29 percent in 1987. Nationally, 55 percent of the cases transmitted heterosexually have been men to women (98 percent in New York City). It is difficult to know how many women are dying from AIDS because female mortality is not included in the routine reports issued on AIDS by the Centers for Disease Control or the New York City AIDS Surveillance Unit.

The reason for not including female mortality, of course, is that the emphasis has been placed primarily on gay and IV drug-using populations who are predominantly male. This has resulted in the needs of women (and their children) being pushed aside, not only in the statistics, but in AIDS educational efforts and the health and social service delivery systems. The statistical reporting system merely reflects the built in bias permeating the larger establishment, that there are so few women who die from AIDS, they do not merit their own category. While it is true that the number of women presently diagnosed with AIDS is relatively low compared to males, there are still 4,541 infected females who have been reported by the CDC nationwide. Over half of these women have died.

A similar excuse is given for not including women in AIDS research protocols there are so few women with AIDS and locating them is too difficult. Yet studies are done every day on people with rare and exotic "orphan diseases'', some with as few as 300 cases in the entire United States, and somehow the research scientist are able to locate them. Why is it so much more difficult then to find a woman with AIDS in New York City, for example, where perhaps as high as two percent of the women giving birth are infected? Perhaps one only need look at the roster of scientists doing the major AIDS studies 99 percent are male.

A drug that has been tested only on males may have a very different reaction on females, considering the differences in hormones and average body size. But this is precisely one of the reasons given for not including women, that there are physiological and hormonal differences between men and women which would require testing larger samples, thereby increasing the cost of the study.

Another reason for excluding pre-menopausal women from the clinical drug trials as a class is that there may be a risk to the fetus should a pregnancy occur. The presumption here is that all fertile age women are at risk of pregnancy and, upon becoming pregnant will, without exception, carry to term. There is no discussion of any anomalies the drug may cause to the male reproductive capability or his chances of producing a defective child. And no consideration of the individual situations of women, some of whom may be sterilized, abstaining, using birth control consistently and successfully for long periods, or who would want to have the child regardless of study participation. If this rationale is carried one step further, it should effectively eliminate reproductive-age women from all drug protocols because of the potential risk during pregnancy. "The women, children and drug users with AIDS tend to be disproportionately Black or Hispanic. Other than persons in institutions, however, women are the only adults officially excluded as a class."*

Persons with AIDS (PWAs) are increasingly being rejected for treatment by the medical establishment. Dentists and doctors are refusing to work on gay males or IV drug users for fear of infection. Some surgeons will not operate on individuals who are known to be HIV positive, and a few doctors even have stopped doing surgical procedures altogether out of fear. As the epidemic spreads more and more into the female population, there is no doubt that more obstetricians and gynecologists will stop accepting women whom they consider to be in "high risk" groups, regardless of whether they are infected or not. In New York City, that will be primarily Black and Hispanic women. (The designation of "high risk" groups has stigmatized particularly gay men and intravenous drug users, and increasingly is being used to label persons of color. This pigeon-holing ignores the fact that it is the high-risk behavior of individuals which puts them in jeopardy, and not the social or ethnic groups they belong to.)

Even now, it is becoming more and more difficult for HIV-infected women to find physicians or clinics who will accept them as abortion patients. An infected woman may go from one doctor to another, trying to find one who will perform a procedure, until it becomes too late for her to obtain a safe abortion. It is even more difficult for those women who are in the public health care system.

Many persons with AIDS have lost their jobs, their insurance coverage, and their homes. In addition to being very ill themselves or caring for a loved one who is ill, if they wish to have an abortion, they must also deal with the Medicaid system. Federal Medicaid coverage for abortions was eliminated in 1977. Since that time, the legislatures of 37 states have also eliminated state Medicaid funding for these procedures, leaving only 13 states where abortions are paid for by local Medicaid funds. In addition, the Reagan Administration has seen fit to push regulations that will prohibit abortions and abortion counseling by any family planning programs that receive federal funds. Without federal or state Medicaid coverage for procedures, many poor women will not have the freedom to chose abortion as an option. Fortunately for the poor women in New York, the state continues to bear the medical costs of abortion procedures. But every year, we are threatened by numerous bills that are aimed at taking away that coverage.

Lawmakers must reinstate both federal and state Medicaid funding for abortion procedures in order to assure that poor women, regardless of where they live in the United States, can freely exercise their right to choose if, when and under what circumstances they want to become parents, and being infected with AIDS virus should in no way abrogate that right.

After visiting a new gynecologist for the first time, a Long Island woman wrote of her misgivings when asked to fill out a form indicating if either she or her husband were Black, Hispanic, gay or used IV drugs. They were none of the above, but she wondered how different her treatment might have been if she had belonged to one of the "offending" categories. This was an office with a white, middle-class clientele who were presumably at very low risk. Such a questionnaire is not only an affront to personal dignity, it is also useless. Few people want their privacy intruded upon by divulging, even to a physician, that they are either bisexual, gay or using drugs.

One infected woman was turned away from an abortion clinic and told to go to a local hospital. The clinic claimed that: "The hospital is better equipped to deal with the safety precautions necessary for working with HIV-infected patients" and, in point of truth, many facilities are inadequately situated and equipped to deal with this unforeseen and deadly pandemic. But what about those women who are unaware they are infected? Studies from two large metropolitan hospitals in New York City show that 42 and 86 percent of the women who were infected did not know they were infected when they gave birth. No matter how truthful she is, it is not the patient's self-reporting of her HIV status that protects medical staff, but routine use of safety precautions with all patients, whether or not their HIV status is known.

So, how many women are infected with HIV? That's an unknown, but if New York City is an example of what we can expect to happen to other large urban areas in the future, things do not look bright. The New York City Department of Health estimates that there are approximately 50,000 women in New York City of childbearing age who are already infected with HIV, and in 1988 it is estimated that in New York State, 700 infants will be born infected with the virus. There is a difference between having antibodies in the blood and having the virus in the blood. Antibodies are produced by the body as a defense against an infection, such as the HIV virus. The antibodies in the blood of a newborn baby have not been produced by the baby, whose immune system is too immature at birth; rather they are antibodies which have been transmitted from the mother to the baby during pregnancy. All babies born to HIV-infected women carry their mother's antibodies in their blood, but not all of them will be infected by HIV. Scientists believe that about 30 to 50 percent of the babies born with antibodies also will be infected with the virus. Generally it is estimated that some 75 percent of these virus-infected babies will go on to develop HIV-related disease. In other cases, the baby has temporarily absorbed the mother's antibodies to HIV but not the virus itself, and it is estimated that these latter children will probably shed any HIV antibodies by six to 15 months.

One recent study shows that one baby out of 61 born in New York City during the month of November 1987 carried antibodies to the AIDS virus. This means that at least one mother in 61 (or 1.4 percent of the women carrying to term in New York City) was infected. The figure is even higher for the Bronx one baby in 53 which translates into a staggering 1.9 percent of women giving birth. Recent data (July 1988) has indicated that infection among women who gave birth was as high as one in 22 in certain parts of the Bronx, Brooklyn and Manhattan. It also may be that an even higher percentage of HIV-positive women who know their status seek abortions, abstain, use birth control or practice safer sex so that the actual rate of infected women may be even higher than for women carrying to term.

It then becomes quite apparent that this weeding out process on the part of physicians and clinics is useless and these policies do nothing but deprive women of easy and early access to safe abortion.

If all staff is not adequately trained and all safety precautions are not instituted for every patient, including those women whose HIV status is unknown, then these arbitrary rules are as meaningless and dangerous as AIDS testing is. As we know, there can be false negative or false positive results with AIDS testing, meaning that some women who are infected would receive clinical services and some who are not infected would be turned away. It can take from four to six weeks up to six months or longer for the body to produce enough antibodies to show up on the AIDS test. During this time, ordinary testing would show nothing. Besides, a person may be tested today and become infected tonight.

Add to that the recent discovery that the virus can lurk in macrophages a type of immune system cell found in tissue, semen and vaginal fluid, in blood throughout the body and in the brain and reproduce without also invading T-4 cells, and without triggering the production of antibodies. The common screening methods to detect AIDS antibodies are useless in detecting the invasion of the macrophages. In addition, the macrophage tests are difficult to perform and are available at only a few research laboratories at this time. Because of the difficulties in performing the procedure, they may be available only to those considered "high-risk" when they are finally used as a more widespread screening method. Since the nation's blood supply has not been screened by this method, anyone who has received a transfusion would have to be put in that category. Under the circumstances, screening pregnant women for the AIDS virus truly becomes an exercise in futility.

It is important also to remember one simple but very fundamental thing about testing: It is never done for the sheer pleasure of the exercise or for the results to lay around in a dusty file somewhere. Testing any kind of testing, whether IQ, SATs or AIDS is done for one reason, and that is for someone in power to use the results for some judgmental purpose, which almost without exception eventually will be acted upon. With AIDS, the purpose often includes discrimination and prejudice against the HIV-infected person. And information obtained under a given set of circumstances can easily be used for reasons other than those for which it was originally intended for example, to target pregnant women for unwanted procedures.

Recently an activist in the AIDS field confessed that she was very ambivalent about whether an HIV-positive woman should be "permitted" to bring a child into the world, a child who will probably suffer a great deal, cost society thousands of dollars, be orphaned and die before it is two years old. Already it has been suggested by some physicians that it would be better for women who are HIV-positive to be sterilized. But in our society, we do not force women who may be at risk for carrying fetuses with any other potentially terminal or debilitating illness to be sterilized or aborted. Why do we think any differently about AIDS? If an HIV positive woman chooses to carry to term, her decision is no more or less valid than that of a woman who makes that same decision after learning there is a high risk of having a child who will die shortly after birth because of some inherited or congenital disorder. There are children infected from birth who now are seven and eight years old, and they seem to be doing just fine. A new study to provide data on the medical prospects of children carrying the AIDS virus was conducted by Dr. Thomas Mundy of the Cedars-Sinai Medical Center in Los Angeles. The Study involved about 20 children who became infected through contaminated transfusions soon after birth in the early '80s. As of May, 1988, one-third of the children were still well and had not yet developed even any blood abnormalities associated with immune system damage. Another third have had more than the usual number of childhood infectious diseases, but, according to Dr. Mundy, their general health "is not out of the normal range". The final third have died of AIDS or are ill with the disease.

Whether these findings will apply as well to babies born with the virus is not yet known.

Some people will argue that with an AIDS baby, the mother will probably die first, leaving it orphaned and, therefore, the comparison with the other cases is not comparable. But we do not dissuade women with terminal cancer or other fatal diseases from having children whom they know with certitude they will not live to rear; nor do we stop women from reproducing who have a high risk of losing their own lives or health if they give birth. Even though female survival after contracting AIDS is shorter than male, still some 15 percent of AIDS patients survive five years or longer. Why do we balk when it comes to women with AIDS? Because there is a moral judgment about any sexually transmitted disease those who contract it are being punished for indulging in certain types of unacceptable behavior. Also, because many of the mothers are from minority groups, there is the implication that it doesn't matter whether these babies are given an even chance in life since they will become a burden on society. This ignores the heroic efforts of the minority community to care for these children within their own cultural context.

We have no way of judging what is going on inside the mind of a woman with AIDS or any other terminal illness. Having a child probably has very strong significance for her in terms of leaving something behind that is uniquely hers, or perhaps it is a way of denying her illness, of telling herself that she is okay. Whatever her reasons, the final decision should be left up to the woman in consultation with her physician. A personal decision. And that is as it should be.

A recent study indicated that the virus has been isolated in the cells of the large intestine, indicating that HIV may have the ability to pass directly through the intestinal wall during anal intercourse rather than being carried by the blood stream; and new studies reported in the Annals of Internal Medicine (March, 1988, Vol. 108, No. 3) suggest that "HIV enters cervical secretions from selected infected cell populations in cervical tissue, and these cells may be involved in transmission of HIV by heterosexual contact and to neonates born to HIV-infected women." If this is true, then some newborns may be contracting the virus during birth and not before. Perhaps future studies will indicate that cesarean delivery can cut down the number of infected babies born to mothers with HIV.

Justice William O. Douglas once wrote that: "The Constitution and the Bill of Rights guarantee to us all the right to personal and spiritual self fulfillment. But the guarantee is not self fulfillment. But the guarantee is not self-executing. As nightfall does not come at once, neither does oppression. In both instances, there is a twilight when everything remains seemingly unchanged. And it is in such twilight that we all must be most aware of change in the air however slight lest we become unwitting victims of the darkness."

We must not let the dawning of the AIDS epidemic become the twilight of our hard-earned right to reproductive freedom for all women!


Barbara Santee is a medical sociologist, earning her Ph.D. from Columbia University. She has served as senior staff member of International Planned Parenthood; was executive director of NYS-NARAL; and currently is a research consultant and writer on women’s health issues. Dr. Santee is acting president of the Women and AIDS Resource Network.

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