U.S. Is Close to Eliminating AIDS in Infants, Officials Say

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nytimes.com/2005/01/30/nyregion/30aids.html?ei=5065&en=5e8876f16501e60b&ex=1107666000&partner=MYWAY&pagewanted=print&position=

By MARC SANTORA

IDS among infants, which only a decade ago took the lives of hundreds of babies a year and left doctors in despair, may be on the verge of being eliminated in the United States, public health officials say.

In 1990, as many as 2,000 babies were born infected with H.I.V., the virus that causes AIDS; now, that number has been reduced to a bit more than 200 a year, according to health officials. In New York City, the center of the epidemic, there were 321 newborns infected with H.I.V. in 1990, the year the virus peaked among newborns in the city. In 2003, five babies were born with the virus.

Across the country, mother-to-child transmission of H.I.V. has dropped so sharply that public health officials now talk about wiping it out.

“This is a dramatic and wonderful success story,” said Dr. Vicki Peters, the head of pediatric surveillance for the New York City Department of Health and Mental Hygiene. This winter, Dr. Peters presented a report in Bangkok for World AIDS Day documenting the improvement in New York.

The success in fighting mother-to-child transmission, a sweeping victory for public health officials, was made possible largely because of better drugs, but aggressive public education and testing, as well as cooperation at the federal and local levels, also played a significant role.

The advent of AZT, a drug used to attack H.I.V. in the blood and central nervous system, was critical. But equally important was simply getting mothers to know their H.I.V. status before they gave birth, a problem complicated by privacy and political and social issues.

Much of the developing world continues to be ravaged by AIDS, however. In sub-Saharan Africa, more than two million people died of the disease last year. “We have had incredible progress,” said Dr. Lynne Mofenson, the chief of the Pediatric, Adolescent and Maternal AIDS Branch of the National Institute of Child Health and Human Development, part of the National Institutes of Health. “But if you think about the U.S. and New York and then you think about Africa, it is like a tale of two cities, a tale of two epidemics.”

The advances in this country are considered stunning, given the scope of the problem two decades ago.

“What we were grappling with was death,” said Dr. Stephen Nicholas, a pediatric AIDS specialist at Harlem Hospital Center, remembering the late 1980’s and early 1990’s. “We were preoccupied by death.”

As AIDS spread from the gay community to drug users, women and finally their children, Dr. Nicholas recalled, frustration and hopelessness grew. At his hospital, 30 to 40 babies were dying a year. Mothers were giving birth to H.I.V.-infected children at an alarming rate across the country, estimated at 2,000 a year. While health officials did not track infant H.I.V. cases nationwide, they did count infants with AIDS, a figure that peaked near 900 in 1992. New York City was especially hard hit, accounting for about 22 percent of the infant infections.

Central Harlem and the South Bronx had the highest rates of infection in the country. Yvonne, a 37-year-old woman from the Bronx, gave birth in 1994 at Harlem Hospital Center, and learned that both she and the baby had H.I.V. only after the child, her second, began developing strange rashes and swollen glands.

 

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“I got hysterical and I went into a rage and I started throwing things,” said Yvonne, who asked that her last name not be used because her friends do not know she has H.I.V. "I thought everyone was lying and out to get me. I got really scared, to where I really didn’t want to touch my child.

“I thought I was going to die. I thought me and my children were going to die. I just assumed we all were doomed.”

Just after Yvonne gave birth, the tide began to turn. Several months after her son was born, a groundbreaking study was completed that changed the way pregnant women infected with H.I.V. would be treated.

Doctors suspected that AZT could be effective at reducing the presence of virus in the bloodstream and significantly decreasing the chances of transmission, but there was reluctance to give the drug to pregnant women. Eventually, faced with thousands of sick babies, the National Institutes of Health allowed a test in which some mothers were given a course of AZT and others were given a placebo. Public health officials anxiously awaited the results.

“I remember the day,” Dr. Mofenson said, recalling when the results were released in 1994. “It was absolutely incredible.”

The study showed a 67 percent reduction in the risk of transmission.

Moving with unusual speed, the federal government immediately allowed the women in the study group who had been taking placebos to switch to AZT, Dr. Mofenson said, and the babies born to those mothers also had a lower H.I.V. infection rate. Soon, women across the country were being treated.

With no intervention, the likelihood that an infected mother will pass H.I.V. to her child is 20 to 25 percent, according to the Centers for Disease Control. A year after the introduction of AZT treatment, the risk had dropped to 8 percent, Dr. Mofenson said.

Since then, a combination of ever better drugs, more rigorous testing and partner notification, and greater awareness of the necessity of safe sex practices has contributed to lowering the risk even further.

AZT was most effective if taken during the second trimester and administered during labor. But many women, like Yvonne, had little if any prenatal care and did not know whether they had H.I.V. Dr. Lucia Torian, the director of H.I.V. surveillance for the city’s health department, said that in the first years treatment was available, the city and state were still finding infected mothers only when they gave birth to infected children.

 

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The stigma of AIDS posed a significant barrier to the flow of vital information. While the state started an AIDS surveillance program in 1981 and tested all newborns for H.I.V. beginning in 1988, for years the program was conducted blind, meaning that no names were attached to the data. If a mother gave birth to a sick child, she would not be told that she or the child had H.I.V. Often the mother would not learn that both had the infection until the baby showed serious, usually fatal symptoms. And health workers did not track down and notify sexual partners of those who had the disease, a standard practice with other sexually transmitted diseases.

David Rosner, a professor of public health history at the Columbia University Mailman School of Public Health, said the fear that AIDS patients would suffer discrimination was not without reason.

“When this disease struck, it was often seen as being brought on by the individual himself,” he said, noting that in other epidemics - from tuberculosis to cholera - a similar reaction had occurred.

Dr. Guthrie S. Birkhead, director of the AIDS Institute and the Center for Community Health at the New York State Department of Health, said that in 1997 the state finally began attaching patient information to the newborn H.I.V. tests it conducted and then passing that information along to a patient’s doctor, so that mothers could get treatment.

In 1998, a state law was passed that required hospitals to conduct immediate testing of newborns. The results could be learned in 12 hours, and patients could be treated promptly.

“The newborn testing became a safety net,” Dr. Birkhead said.

Although New York was hit harder by AIDS than any other state, New York lagged when it came to AIDS reporting, said Dr. Torian, of the city’s health department.

“It is very hard for us to understand at this point,” Dr. Torian said. “It felt from the public health point of view, and even from the personal view of the mother, not to be a rational stance.”

In the last four years, only one baby has been born with H.I.V. at Harlem Hospital Center. Gone are the days when every bed in an orphanage created to take in children born with H.I.V. was filled as quickly as it became available.

The city’s health commissioner, Dr. Thomas R. Frieden, said the turnaround in New York was “absolutely a success story.” But he cautioned that there was more to be done. He ticked off all the information he has at his fingertips when it comes to a disease like tuberculosis - from the type of drugs patients are taking to key lab tests to whether they are responding well to treatment - and noted that no similar system existed to closely monitor H.I.V. and AIDS.

“We’re not legally able to collect that information, and even if we were, New York State law would prevent us from using this data to improve patient outcomes,” he said, referring to state privacy laws.

And success in treating AIDS has raised the concern that the public may be growing complacent about AIDS prevention. A survey conducted by the city’s health department in 2003 showed that 40 percent of people who had sex with multiple partners said they did not use condoms.

But as the struggle with pediatric AIDS shows, much can be accomplished when there are a clear focus and a concerted effort. Not only are children born with H.I.V. living longer, mothers now can take action to make sure they never pass on the virus, and there is anecdotal evidence that many now feel free to have more children.

Yvonne and her H.I.V.-positive son, who just turned 11, are leading full lives. She had another child 14 months ago, this time getting treatment during her pregnancy that allowed her to give birth to a healthy baby, free of the virus.

“We don’t need to be bringing sick babies into the world,” Yvonne said. “We need to let everyone know it is still out there, but we can do something about it.”

 

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No doubt if so much time had not been wasted out of privacy concerns for pregnant mothers with AIDS, this day would have come sooner and more babies would have been saved. The ACLU and their ilk again showed no concern for the unborn, who if treated while in the womb, are 100% curable.