Pubdate: Sun, 16 May 1999 Source: Sacramento Bee (CA) Copyright: 1999 The Sacramento Bee Contact: P.O.Box 15779, Sacramento, CA 95852 Feedback: http://www.sacbee.com/about_us/sacbeemail.html Website: http://www.sacbee.com/ Forum: http://www.sacbee.com/voices/voices_forum.html FEWER MOTHERS PASSING ON AIDS MEDICATIONS CURB HIV IN NEWBORNS Not long ago, most AIDS babies died before their first birthdays. Most of their mothers, too, lived under death sentences. But times have changed dramatically for women infected with HIV and their offspring. Today, thanks to new uses of drugs to combat the virus, doctors are seeing dramatically fewer babies born with HIV, and even fewer who develop AIDS. Children who do become infected can be treated and live nearly normal lives. And although women of childbearing age, particularly African Americans, represent an increasingly high percentage of people contracting HIV, they no longer are destined to leave their babies motherless. "The impacts have been amazing," said Lisa Ashley, nurse practitioner in the UC Davis Medical Center pediatric infectious diseases clinic. Just five years ago, a pregnant woman with the AIDS virus had about a 30 percent chance of passing HIV to her infant. Today, the risk is less than 5 percent if the woman takes anti-retroviral medication both during pregnancy and intravenously during childbirth. Such treatment became standard after a landmark study in 1994 showed that women with HIV could significantly reduce the risk of transmitting the virus to their babies if they were given the drug AZT during pregnancy, labor and delivery and if their babies received the drug during their first six weeks of life. At the UC Davis Medical Center, which draws patients from across Northern California and sees about a dozen pregnant women each year who are infected with the virus, the results have been remarkable. During the past three years, not a single person who has received full drug treatment has given birth to an infected baby, said Ashley. "In most of the major centers, it's a rare day now when someone is born with HIV," said Dr. Jason Flamm of Sacramento's Center for AIDS Research, Education and Services. For babies who do become infected, doctors can offer hope through the use of many of the same drug combination therapies that have caused death rates among adults to plummet. "Kids I didn't think would make it through the holidays a few years ago have turned around on these drugs," Ashley said. "They have gained weight. They have stopped getting sick. Some could barely eat before, and they're laughing and pulling themselves up and going to birthday parties." In some children, all evidence of the virus has disappeared. Statewide and national statistics are equally uplifting. According to the state office of AIDS and the federal Centers for Disease Control and Prevention: * Between 500 and 700 infants nationally became infected with HIV during pregnancy or childbirth in 1997, the last year for which CDC estimates are available, compared to 1,000 to 2,000 in 1994. * 385 new cases of AIDS were reported in children from July 1997 through June 1998, a 20 percent decrease over the previous reporting year. * Between 1996 and 1997, the number of children younger than 13 diagnosed with AIDS declined 40 percent. * In Northern California, 24 youngsters were born with HIV or AIDS in 1992. That number dropped to four last year. * Statewide, only 20 youngsters were diagnosed with AIDS in 1997, 19 of whom contracted the virus through their mothers. In 1992, 51 children were diagnosed. A Sacramento woman who four years ago was among the first in the area to undergo prenatal HIV treatment said she is "very grateful" she hadthe chance to do so. She said she once ended a pregnancy because such treatment was unavailable and "the belief was that HIV- positive mothers had HIV-positive babies." Now the woman, who herself is taking a combination of drugs that have reduced the level of HIV in her blood to zero, is raising healthy, rambunctious twin girls who are free of the virus. "Anyone in my position would still have a hard choice to make," said the woman, who asked to remain anonymous to protect her children from the stigma of their mother harboring HIV. "Gratefully, my choice worked out well. My girls are everything to me." Though she is healthy now, she has developed an arrangement with a couple who are acting as "co-parents" to the girls and have agreed to care for them if she becomes ill or dies, she said. Use of anti-retroviral drugs, in combination with a newer class of medications known as protease inhibitors, represents a monumental improvement in treatment of those with HIV, said Dr. Wanda Wenman, a pediatric infectious diseases specialist at UC Davis. Yet obstacles still remain, Wenman emphasized. Some of the women at greatest risk of contracting the virus, particularly intravenous drug users, are slipping through the cracks because they fail to get prenatal care or they are not tested for the AIDS virus when they do see a doctor during pregnancy, said Wenman and others. "I can't tell you how many times we have found out that a woman is HIV- positive only after her baby gets sick," said Ashley. Neither pregnant women nor newborn babies are required to be tested for AIDS in California, though doctors must ask women whether they want their blood to be screened for the virus. The Elizabeth Glaser Pediatric AIDS Foundation advocates a more aggressive approach, supporting a recommendation by the Institute of Medicine that the HIV test be integrated into the standard battery of prenatal tests for women, said spokeswoman Kelli O'Reilly. Under the "patient notification" proposal, women would be informed that the test is going to be administered and would have the right to decline it. Wenman supports such a proposal. The vast majority of women who are given the option of having the HIV test agree to it, she said. One question is how to reach women who are unwilling or unable to get prenatal care. A local organization, Harm Reduction Services, is attacking the issue by taking to the streets in search of women of childbearing age who may be at risk for contracting HIV and passing it to their infants. "Many of these women are afraid to get care because they have had bad medical experiences or are afraid they will be judged harshly because of their drug use, or that their babies will be taken away from them," said Eric Reininga, executive director of the group. Reininga said his organization's outreach workers target people in "high-density drug use" neighborhoods for tests and counseling and have linked dozens of women to prenatal services they might never have sought. "We can't get them into care or on the medications until we identify them," he said. "So we go out and find them." Wenman said she worries that women of childbearing age may put themselves at greater risk for HIV infection these days because of the availability of effective drugs. That, she said, is dangerous thinking. Although the drugs appear safe for the developing fetus and newborn, she said, "this is not going to be a normal pregnancy. There are more risks for the mother and more risks for the fetus" when the mother is being treated for HIV. "The best, most important factor in having a healthy baby is a healthy mother," she added. The fact that the UC Davis program has not seen a single pediatrics patient die of AIDS in three years is a testimonial to how effective the drug treatments can be, Wenman said. But she pointed out that the drugs are unavailable in developing countries, where HIV is rampant. Worldwide in 1997, nearly 600,000 children became infected with the virus, mostly during childbirth. Wenman cautioned that, even for children able to get them, the drugs are not "magic bullets." Many youngsters who had developed full-blown AIDS before the drug combinations were widely available still have significant problems, including stunted development and nutritional deficiencies, she said. "None of them thrive as well as healthy kids," said Wenman. "We can get them to school, they can be active, but they still might need support." One Sacramento youngster, who was started on the drug cocktails after she was diagnosed with AIDS at 7 months old, is smaller and more fragile than her peers, said her guardian and great-grandmother, who asked not to be identified. But the girl is healthy enough to enjoy most of the activities of other 4-year-olds, including preschool, bike riding and climbing on playground equipment. "When she gets home from school she's pretty tuckered out," her great- grandmother said. "But she's come a long way." The girl occasionally complains about the taste of one of the two medications she must take daily, a common problem for pediatric patients, Wenman said. She pointed out that only half of the protease inhibitor drugs currently given to adults have been approved for use in children, so doctors have fewer choices when a drug combination fails, causes intolerable side effects or tastes so terrible that a youngster refuses to take it. It is older children, Wenman said, who seem most resistant to taking large quantities of medications each day, potentially for the rest of their lives. "Try telling a teenager to take six pills three times a day," she said with a smile. "These kids are our biggest challenge." Still, for a significant number of mothers and their children, the effects of the drugs have been nothing short of miraculous. "I tell my grandchildren that one of them is going to go to college," said the Sacramento woman who is raising the HIV-infected girl. "Maybe it will be her. I sure am pushing for her." - --- MAP posted-by: Derek Rea