Having Children When He's Positive and She's Negative
Special Positive Parenting Section
Dr. Deborah Cohan directs the Bay Area Perinatal AIDS Center (BAPAC), part of the University of California -- San Francisco's Positive Health Program at San Francisco General Hospital. It was here that women participated in the landmark ACTG 076 study which found that AZT lowers the risk of transmitting HIV from mother to child by 66%.
But despite all the power science offers to people living with HIV, when it comes to conceiving babies Dr. Cohan finds her medical judgment overruled by another force -- the law. In California, as in a few other states, it is illegal for any tissue to be donated from an HIV-positive person. This includes sperm from a HIV-positive husband to a HIV-negative wife. (Most of the issues discussed here are the same for a gay male donor.)
There's no law stopping an HIV-positive woman from becoming pregnant, but for couples where the male is HIV positive and the woman is HIV negative, the law in these few states stops them from taking advantage of reproductive technology that can bring their risk of HIV transmission down to practically zero.
"It's crazy. I'm in a position to see a lot of these couples, and even though we have the science to help them, our hands are tied," says Dr. Cohan.
In most states, people with HIV can -- in concept -- access reproductive services. Researchers have shown the safety of reproductive assistance in those with HIV. Altogether, they have documented hundreds of couples around the world who have succeeded in bearing children without transmitting HIV to the mother or the child while using reproductive services.
One case of transmission to a woman through sperm washing occurred in 1990, before PCR testing was available to test the sperm sample; the couple claimed to use condoms consistently, so it is thought the sperm washing sample led to the infection. The woman did not get pregnant. There have also been a few cases of HIV transmission to the woman when sperm washing and Intrauterine Insemination (IUI) were used, but it's believed that the couple's self-reported inconsistent condom use led to the infections.
Whatever society at large might think about positive people having babies, HIV specialists note that couples are at much greater risk of transmission without the expert guidance of medical providers. Trying to conceive on their own is not the only option they want couples to have. Specialists advocate for harm reduction -- reducing the harm associated with certain behaviors that people will engage in anyway.
Policy ShiftLast year, the American Society for Reproductive Medicine reversed its previous policy of almost a decade of not helping couples with HIV. The Society stated that, "according to the Ethics Committee, doctors practicing reproductive medicine ought not to deny treatment to individuals infected with HIV. Ethically as well as legally, they have the same obligation to treat HIV-positive patients as patients suffering from any other chronic disease."
But policy alone didn't move many reproductive service providers to help these couples. Some clinics are not readily accepting of couples living with HIV. Some simply don't have the technology required.
New Clinic for HIV-Positive People OnlyAt the urging of Chicago HIV specialists determined to help their patients conceive a child as safely as possible, andrology specialist R.S. Jeyendran, Ph.D., in January opened a clinic and laboratory specifically for couples living with HIV, Reproductive Lab Service. "Andrology" refers to male diseases, especially those of the reproductive tract. Jeyendran already had an established fertility clinic, Andrology Laboratory Services.
Dr. Jeyendran emphasizes that reproductive specialists need to be clear about the difference between the prohibition against HIV-positive sperm donors and the use of sperm specifically for a committed couple willing to accept the risk of HIV transmission. Women using sperm banks of anonymous donors -- samples that are basically bought and sold -- are protected against diseases, while couples wishing to conceive are only lowering the risk of disease, whether it's HIV or anything else. He says the word "donor" is misleading because a husband is not a donor. Instead, he would be a "depositer," someone who stores his semen for later insemination of a sexual partner.
"Right now it's a misdemeanor for a physician to transfer a contaminated sample," says Jeyendran. "But if you're transferring sperm from the woman's sexual partner, there's no issue. She's already at risk of infection." Jeyendran said the U.S. Food and Drug Administration (FDA) is planning to begin regulating the transfer of sperm from an HIV-positive man with the consent of his partner. With such a legal waiver, he says, "at least the federal government is doing the right thing."
He says most reproductive services labs have two main problems dealing with HIV: they don't have the right equipment to keep a separate lab within a lab for samples from HIV-positive men, and they don't want to risk negative publicity should an infection occur. "That's why we started this lab, so these concerns don't exist," he explains.
There's another big problem. Few labs can test for HIV, and there's no FDA-approved testing of sperm. For couples living with the virus, it's important that the semen sample be tested for HIV after it's been washed.
An Established ClinicWhen one Florida couple living with hemophilia and HIV tried to access sperm washing six years ago, no one would help them. But they got a tip: try Dr. Mark Sauer of Columbia University Medical Center in New York City. Dr. Sauer had a reputation for challenging conventional wisdom. When he received a letter of appeal from the couple, he agreed to help, and a program for people with HIV was born.
"Basically what we do at Columbia is not discriminate," Dr. Sauer says. "In some states, insemination -- with HIV involved -- would be seen as a felony. For that reason we put our work through an institutional review board, so that we do this procedure as a study."
Today, the Women's Reproductive Center at Columbia University has treated between 150 and 200 couples, and sees one to two new couples a week. He reports that, "The couples I see are very devoted. Many people, when HIV enters their lives, they walk out. These are also very well-informed individuals. It's insulting to think that they don't understand the risk. They live with HIV every day."
The Center uses a strict standard: ICSI with IVF (see "Step-by-Step: Sperm Washing" in this issue). "We're trying to change attitudes on a national level, so we're very careful," said Dr. Sauer. "I hope to educate my peers that this is safe and make this more open in my field." In addition to publishing reports on their work to get the word out to other fertility specialists, the center recently sent out a mass mailing to HIV doctors around the country to create awareness about their services.
"As an academic, I know that you can't tell which process is better and safer without thousands of people studied," Dr. Sauer said. "We do ICSI -- one sperm per egg. So you limit the exposure to the sperm. Insemination with semen from an HIV-positive individual is outlawed in approximately half of the states, so we get around that with ICSI." Men must be healthy, with less than 30,000 viral load and stable T-cells, and under the care of an HIV specialist. A third of the men also have hepatitis C.
"As an advocate of women's rights and children's rights, we should advocate for doing this as safely as possible," Dr. Sauer noted. "I would not advocate at-home insemination. Seroconversion with insemination at home over time is pretty high, about 20%.
Prohibitive CostsEven if people with HIV have specialists on their side, they'll find the cost of reproductive assistance shockingly high. Rarely will insurance cover these costs where HIV is involved. This is not so surprising, given that HIV is a relatively new disease, which in turn makes practically all of the science surrounding it new or outright experimental. Insurance providers are adverse to covering experimental therapies even in matters of life-and-death.
Not only are reproductive techniques expensive, some of the services must be used more than once. Sperm washing -- separating diseases from sperm -- is an established technology that costs a few hundred dollars. The cost of testing for HIV after the washing is done will cost a few hundred more. Prices are available at clinic Web sites.
However, using in vitro fertilization with artificial insemination to get the sperm into the woman runs approximately $8,000 to $12,000, or even as high as $20,000. Couples should understand that the in vitro procedure may not take. Using IVF, however, gives -- per cycle -- a higher pregnancy success rate, so there are advantages despite the cost.
Compassionate CareDr. Cohan says, "It's absolutely essential that women and couples with HIV have the right to live as couples who don't have HIV. They should demand the same services available to anyone else. That's their right."
As with all of HIV care, expert medical advice is vital to family planning. Only a compassionate medical provider will help couples navigate their options. Dr. Cohan believes a doctor's sensitivity comes through experience. The more HIV-positive patients doctors have had, the more open-minded they will be. She suggests that people check with the clinics currently helping couples with HIV to get referrals to medical providers near them.
She also recommends that individuals seek out other couples who've had children and talk with HIV service organizations such as WORLD -- Women Organized in Response to Life-threatening Diseases -- in Oakland, California. "That's a great place to start," she says.
Special thanks to Dr. Deborah Cohan of the Bay Area Perinatal AIDS Center, San Francisco General Hospital for her suggestions and review of the above information.
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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.