Mothers and AIDS.

AIDS is the seventh leading cause of death in young children. A new study, however, has shown that AZT will help protect unborn babies from their mothers' HIV infections. Should HIV tests be required of pregnant women and newborns?

It's a political quagmire: individual liberties vs. life and death; a mother's rights vs. her infant's. And it's tied into two short acronyms: HIV and AIDS.

HIV and AIDS have made steady inroads among women in the United States. In 1985, only 7 percent of newly diagnosed AIDS cases involved women; as of June 1994, women accounted for 18 percent of new AIDS cases.

In 1993, approximately 7,000 HIV-infected women gave birth in the United States, according to the Centers for Disease Control and Prevention (CDC). Of those newborns, 1,000 to 2,000 are infected with HIV - now the seventh leading cause of death in children aged 1 to 4.

A year ago, a joint study by American and French scientists showed that the drag AZT could decrease by 67.5 percent the transmission rate of HIV from infected mothers to their newborn babies. That finding reopened the controversy over mandatory testing - since studies estimate 44 percent to 50 percent of HIV-infected women don't know they carry the disease. It has been estimated that 100,000 women are infected with HIV, but no one knows for sure.

ROUTINE HIV TESTING ENDORSED

On one side of the debate are those who believe all pregnant women should be routinely tested for HIV as part of a prenatal checkup.

A majority of states have laws or regulations that require women to be tested at least once during their pregnancy for syphilis. In 45 states, the District of Columbia and the Virgin Islands, all newborns are routinely tested for up to nine genetic diseases such as sickle cell anemia and phenylketonuria. Babies' blood samples also are tested for HIV in those same states, but the results are kept secret and are used only to track the epidemic in women and children. These numbers are then used to estimate needs for HIV services and prevention programs.

Why not a routine HIV test?

Because, from the beginning, HIV/AIDS has been "addressed totally backwards" as a public health hazard, says W. Shepherd Smith, president of Americans for Sound AIDS Policy.

"Early diagnosis and information used confidentially to help patients is what medicine is based on," he contends. "That hasn't been the case with AIDS."

Since the early 1980s when AIDS was considered a disease of homosexuals and when an HIV antibody test first became available in 1985, the test was perceived by gay coalitions as a potential tool for discrimination. Intense lobbying efforts ensured laws that provided a solid cloak of confidentiality, that allowed testing only after counseling and only after written consent.

Despite public education on the disease and how it is transmitted, a stigma still attaches to a diagnosis of HIV or AIDS. And discrimination follows its victims. The result has been reinforcement of confidential and anonymous testing as well as consent laws set in concrete.

Dr. Lou Cooper, director of pediatrics at St. Luke's-Roosevelt Hospital in New York and a member of the board of directors of the American Academy of Pediatrics, gives a good explanation of the laws' metamorphosis in New York where confidentiality is paramount:

"In the 1980s, when the AIDS hysteria was so high, a 20-plus page bill on confidentiality and HIV passed the Legislature. The language was proscriptive, and it became even more proscriptive through regulations."

Although New York has often been referred to as the "epicenter of the AIDS epidemic" with the highest number of cases in the nation (more than 80,000), Cooper concludes that the state's laws are "anachronistic at this point." Counseling that could encourage more women to be tested has been relegated to a few state counselors while private physicians are "scared away from doing HIV testing" because of liability and confidentiality regulations.

Because pregnant women are not routinely tested - in New Yolk or nationwide for that matter - Smith says, "Babies are denied the opportunity to get treatment. Criminal is an apt word to describe it.

"It's killing kids who don't have to die, making kids wards of the state because their families can't care for them, forcing kids to suffer," he says. "In no other disease has the total focus been on the rights of the infected, totally neglecting the rights of the uninfected."

Dr. Arthur Caplan, director of the Center of Bioethics, University of Pennsylvania, is even more blunt. "AIDS testing of pregnant women should be mandatory. Privacy and confidentiality are important, but if you can prevent actual transmission of a disease - that takes precedence over privacy."

Caplan says that voluntary testing is generally aimed only at high-risk groups. "If you're not in a clear, at-risk group, you're not tested," he says. Researchers have reported that private practitioners are not routinely counseling women about HIV infection.

In the debate over voluntary vs. mandatory testing, proponents of voluntary testing cite statistics from Harlem Hospital in New York. Its intensive and closely supervised counseling program is successful in persuading 90 percent of pregnant women or new mothers to be tested or to have their infants tested.

However, advocates of mandatory testing say that a more typical situation is shown by Metropolitan Hospital in East Harlem where doctors suspect only 30 percent to 40 percent of HIV-infected women are identified.

Women refuse the test because they don't believe they are at risk or because they are afraid of the test results.

New York needs to improve its data system, explains Barbara McTague of the State Department of Health, to reflect the effects of counseling on voluntary testing. "We suspect there is a lot more counseling and testing going on, but the information is not adequately reflected in our data. We are establishing a data collection system on counseling, testing and care. As the process develops, we'll get a better sense."

Debate in the New York Legislature last year on HIV testing bills centered on the "failure of voluntary testing." Dr. Harold Jaffe, director of the Division of HIV/AIDS at CDC, has pointed out that HIV testing is not offered routinely to pregnant women, even in inner city clinics where the greatest numbers of infected women are found. The American Academy of Pediatrics in its recommendations on HIV testing also points out: ". . .the percentage of pregnant women being evaluated for HIV infection is regrettably small."

At this stage in medical technology, HIV in children is deadly. Many children infected with HIV through their mothers don't make it to age 4, and most children die well before their teens.

Some state legislators have been pushing for mandatory HIV testing of babies - although the AZT studies have made this seem misguided since the drug can help prevent children from being infected before they're born. But the mother must know she is HIV-positive early in her pregnancy and get required treatment.

Even if the infection is not passed to the child before birth, there is the added danger for babies of mothers who do not know they are infected: HIV can be passed from mother to child through breast-feeding.

When blood samples from babies in the 45-state CDC study reveal the presence of HIV antibodies no one - not the mothers, not the lab technicians, not the doctors - knows what blood sample came from which baby. Newborn testing advocates want those tests opened or "unblinded" so that babies testing HIV-positive are identified.

Opponents of newborn testing point to consent and privacy concerns since testing a baby reveals the mother's HIV status, with or without her consent. They also point out that the CDC will not fund these studies if they are unblinded.

MAKE IT VOLUNTARY

The other side of the HIV testing debate is framed by calls for intensive, mandatory counseling of women followed by voluntary testing. With 300,000 women giving birth each year in New York, however, opponents point out that with the funding currently available, every woman could receive about 10 minutes of counseling.

The counseling option is endorsed by the American Academy of Pediatrics, CDC's draft guidelines released in February, American Medical Association and other major medical organizations and such groups as the National Organization of Women and the American Civil Liberties Union.

One of the only ways to ensure the success of voluntary testing is to lay part of the burden on the physician, according to New York's Dr. Cooper.

"We need to make it clear to doctors that they are obligated to educate women," he says.

In New York state, where about 1,600 HIV-infected women give birth each year, resulting in an estimated 400 HIV-positive babies, Cooper believes a good program of education, counseling, voluntary testing and AZT treatments will help decrease the numbers of infant HIV cases.

"If we frighten women away by requiring mandatory testing, we will also frighten them away from prenatal care," he says.

"We've made a lot of headway in dealing with discrimination and the stigma of being HIV-positive," says Barbara Warren of the AIDS Institute, New York State Department of Health, "but it's still there, and women are afraid of that."

Warren and her colleague, McTague, cited demographics that bolster the fear that women would flee a health system that tested them without their consent. Ninety percent of the HIV-infected women in the state are African American or Latino, live in New York City and were infected through intravenous drug use. Patients are poor, some are undocumented immigrants, some have marginal housing if they're not living on the streets, many do not have routine medical care, and some are involved in illegal activities such as drug use or prostitution that could result in their children being taken away.

"There's a real potential for discrimination with mandatory testing," claims Michele Zavos, an attorney specializing in AIDS law who is also a professor at George Washington University in Washington, D.C.

"How do you decide whom to test?" she asks. "Testing everyone could be incredibly expensive. Testing high-risk women would involve mandatory testing of women who are poor, women of color and who are IV drug users or partners of IV drug users.

"How do you mandatorily test without making it discriminatory? And, since we're talking poor women of color who generally only get health care in an emergency room, how are you going to give them AZT?" she asks. "If you are going to require a test, you should be prepared to treat those who are infected."

AZT treatment consists of five doses of the drug a day in the last six months of pregnancy, IV doses during labor and an AZT syrup given to the newborn for six weeks. The average price, according to McTague - $1,295 for all three components of therapy per patient.

Then there are the other costs - lab work, nursing, administration - amounting to about $1,057 for a total of about $2,352 per patient.

Medicaid money will be a major factor in paying those costs, McTague says.

And Dr. Cooper points out, "The cost of treating HIV is about one-and-a-half percent of total health care costs ($1 trillion nationally). So if you spend $16 million on treating all HIV-positive pregnant women, you're talking trivial costs. If you decrease HIV infection in babies by two-thirds, it far and away pays for the extra cost of the AZT. Proper care will always cost less than improper care. And AZT is primary prevention at its best."

THE HIGH COST OF NOT INTERVENING

The data are rough and the estimates are preliminary, but McTague has done the best she can to project the costs of a universal counseling and AZT program to reduce transmission of HIV from mother to baby.

She has estimated the cost of counseling for all women giving birth in New York City at about $5.2 million. The cost of an AZT program for HIV-positive mothers would be about $1.5 million. Total cost: About $6.7 million. By not intervening, by treating diseased babies and women, McTague projects medical costs at roughly $10.3 million. Identifying and treating pregnant women, thereby reducing the number of HIV-infected babies, could save the city about $3.6 million in health care costs.

McTague based her estimates on figures from a limited number of health care facilities offering AZT therapy times the 124,818 live births in New York City during 1993.

LOOKING AT A STATE ROLE

Attorney Zavos is emphatic about one aspect of the HIV/AIDS issue. She believes the first requirement for state legislators is to become educated on the issue before passing legislation. "I think they are obligated to understand the science of the disease and the realities of the people's lives who are infected."

State legislation can help combat discrimination and open the doors to necessary services, she says.

Cooper's advice for doctors is to use HIV counseling and voluntary testing as a "clear standard of care," a part of the routine care offered all pregnant women.

"Physicians should be taking the lead, working with legislatures to ensure there are no legislative barriers and determining where resources and structure need to be varied to fit the needs of patients and communities," he says.

"The goal," he says, "is to treat women and children and, as far as possible, decrease transmission."

He also suggests emphasis on community care centers for HIV-positive women and their babies.

"There are very few communities that are HIV free," he warns. The American Academy of Pediatrics agrees. In its new HIV guidelines, it reports that AIDS cases were no longer confined to urban areas and that more than 25 percent of women with AIDS are currently from smaller cities and rural areas of the United States.

Smith says there should be a standard of care to diagnose women for HIV when they become pregnant. "When something is made a standard of care in medicine, insurers, including Medicaid, pay for testing and treatment. If women want to opt out, they could sign a waiver saying that they were offered an HIV test and refused it. If that waiver wasn't signed, she would automatically be tested."

With the present laws, he adds, "We are guaranteeing malpractice in respect to HIV ad nauseam. The second largest liability insurer discourages doctors from testing because all the confidentiality laws subject him to a lawsuit."

Whatever course a state may take, however, there is no quick fix for HIV-infected women and babies. Prenatal testing will not catch those women whose first experience with medical care is when they deliver their babies in a hospital emergency room. And those are the women most affected by the HIV epidemic - the poor, the minority, the uneducated. And there will be women who are unwilling or unable to go through the AZT regimen.

But, when it comes to any laws involving HIV and AIDS, Zavos pleads: "Don't legislate based on ignorance and fear and don't legislate based on public fear. Become educated about the disease and listen to the people who have the disease before passing laws."

RELATED ARTICLE: States Adopt Testing Legislation

A handful of states have adopted some type of HIV testing legislation. These include:

* Michigan now requires physicians to offer HIV testing to all pregnant women and creates exemptions for women not giving written consent to being tested.

* Rhode Island requires its health department director to devise rules and regulations ordering HIV testing for newborns, without written consent, when there is a "high degree of medical suspicion" the child may have contracted HIV and the physician is unable to obtain the written consent of the mother. New York has a similar measure under which foster children can be tested by order of the health department.

* Washington state requires health care practitioners to ensure that pregnant women in their care receive AIDS counseling.

Tracey Hooker specializes in HIV/AIDS issues for NCSL. Dianna Gordon is an assistant editor of State Legislatures.