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One of the results of half a decade of successful antiretroviral therapy combinations is that HIV-infected men and women have more optimism that they will live for 20 or more years after they are diagnosed with HIV. Along with this optimism come the desires and problems that uninfected people experience, including the desire to have children.
The question that most clinicians did not want to answer until recently — and which many gynecologists are uncomfortable discussing even now — is how an HIV-infected person can safely reproduce and give birth.
Four years ago, Stanley J. Bodner, MD, FACP, associate professor of medicine at Vanderbilt University School of Medicine in Nashville, TN, gave a lecture on HIV and discussed how he was helping an HIV-positive woman become pregnant. Women in the audience were angry with him for even suggesting this. "They thought it was wrong," Bodner recalls. "But it’s not wrong; people have a right to have a child."
Now that vertical transmission among pregnant HIV-infected women has been reduced to 1%-2% in the United States, there is slightly more tolerance for HIV-infected women who choose to have a baby, and it’s likely clinicians will see increasing numbers of HIV-infected couples who make this decision.
"Very few of us in the medical field are encouraging this group of people to try to achieve pregnancy," says Rani Lewis, MD, associate professor of obstetrics and gynecology in the Division of Maternal Fetal Medicine at Vanderbilt University. Nevertheless, "HIV is no longer a death sentence," Lewis notes. "People are living with it for 10 to 20 years, and it’s hitting men and women in the 25-to-45-year range, and that group of people is the group most interested in having families."
The widely publicized reductions in AIDS deaths and infants born with HIV in wealthier nations where antiretrovirals are readily available have convinced many HIV-infected people that they can lead normal lives, and this includes giving birth.
"We’ve convinced everyone from a public health standpoint that if you just take these medications, we’ll decrease the likelihood that you’ll transmit this virus to your unborn child," says M. Keith Rawlings, MD, associate medical director at Southeast Dallas Health Center of Parkland Health and Hospital Systems in Dallas.
"The truth of the matter is that one of the major accomplishments in the 1990s is the ability to reduce vertical transmission," Rawlings adds. "So if you are a 20-something woman, there may be a desire to have children, and that’s not going to change because you’re HIV-positive. We have in essence sold you a truism that you can be pregnant and deliver an uninfected child."
To suggest an HIV-infected man or woman give up the idea of having children is asking them to do something that’s outside normal human experience, Lewis maintains.
Rebecca Denison, founding director of Women Organized to Respond to Life-Threatening Diseases (WORLD) in Oakland, CA, is an example of an HIV-infected woman whose desire to give birth was more powerful than her fear of the disease.
When Denison tested positive in 1990, she was told she had about a 30% chance of transmitting the virus to her baby if she chose to become pregnant. Five years later, she was married and wanted to have her own children.
"My reasons were the same as any woman who wants to have children," Denison says. "My brain said, No, you’re not going to do that,’ and my heart would say, This is the only thing in life I really want.’"
Her heart won. She became pregnant with twins without high-tech assistance and gave birth to healthy babies, who now at age 4½ years remain HIV-negative. While pregnant, she remained bed-bound by her physician’s orders and took a short course of AZT, followed by a single dose of nevirapine an hour before delivery. She delivered her children via a scheduled cesarean section.
Denison notes that all of the methods she used to protect her infants from becoming infected with HIV have now been proven in scientific studies to be effective strategies.
WORLD provides pregnancy counseling to people with HIV, as do some HIV providers. For instance, the Southeast Dallas Health Center has a number of serodiscordant couples who wish to start a family, Rawlings says.
Because Rawlings believes this issue is outside of his area of HIV expertise, he asked Lewis to visit the clinic and to speak with couples about how to reduce the risk of transmission while attempting to fulfill their dreams of parenthood.
Bodner has helped a variety of HIV-infected patients with reproductive issues, and he’s currently participating on a committee of the Triangle AIDS Leadership Alliance Mid-America that is addressing the issue of improving reproductive care for HIV-positive women. The committee is developing guidelines for counseling and prenatal care involving HIV-infected women.
The alliance was started by Triangle Pharmaceuticals in Durham, NC, as a way for the company to interact with physicians and listen to their concerns.
While the medical community readily acknowledges that the risk of vertical transmission can be greatly reduced through some acceptable medical strategies, there is no similar agreement about how an HIV-infected man can safely impregnate his HIV-negative mate.
"Couples in that situation need to understand there is a risk of transmission and there is no way to eliminate risk at this time," says Ida Onorato, MD, associate director for science at the Division of HIV/AIDS Prevention in the Centers for Disease Control and Prevention in Atlanta.
"So a couple should be given all of the information available on risks and benefits, and it’s up to the couple as to what their decision should be," Onorato says. "Certainly, they should not try to attempt to conceive on their own, using some kind of natural method that they’ve read about, and they should not conceal from their provider what their situation is."
The CDC recommends none of the high-tech reproductive methods that are being used and studied by some physicians around the world because none of these have enough published research regarding their efficacy and safety, Onorato says.
Many urban HIV clinics deal daily with HIV-infected women who have become pregnant accidentally or who first learned of their HIV status when they became pregnant, so the issue of planning safe reproduction is a moot point.
"When protease inhibitors were the new kids on the block, I think there was some theorizing in the community that there might be individuals wanting to become pregnant, but this group was never bigger than it was in the past," says Roxanne Cox-Iyamu, acting medical director for the Whitman-Walker Clinic in Washington, DC.
"We see five or six women become pregnant throughout the year, but very few planned pregnancies," Cox-Iyamu adds.
The bigger issue faced by Whitman-Walker patients is how single women with HIV can care for both their own health and that of their infants, Cox-Iyamu says.
Likewise, the AIDS Action Committee in Boston has had few HIV patients who have planned pregnancies. Most cases have involved women who have had unplanned pregnancies, and some of these women opt to have an abortion. But reproductive issues do arise occasionally. In those cases, case managers may suggest clients meet with a gynecologist who can discuss the disease’s implications for reproduction and what medications and other treatments might be necessary.
"What happens usually is someone from a foreign country has a different way of understanding HIV in general, and they think if their friend has a baby then they can have a baby," says Claudine Guerrier, bilingual case manager for AIDS Action Committee.
Guerrier briefly assisted an African woman who believed her HIV infection was caused by a curse from her mother-in-law. The woman had one daughter, and her husband, who was HIV-negative, wanted to have a second child. Guerrier gave the husband education about HIV, pointing out that he could contract the disease from his wife if they had unprotected sexual intercourse. She also told him that by insisting on having another child he could be causing his wife additional stress because she would need to take additional medication.
"He said he didn’t care because he wanted a family," Guerrier recalls. "I never saw them again."