www.facebook.com/NationalHemophiliaFoundation twitter.com/NHF_hemophilia /stories/feed

Bringing Up Baby

Family planning options for HIV-discordant couples

By Heather Boerner | 09.19.2011
Originally Published September 2011
Baby boy crawling

When Robin Bratton met her future husband, Val D. Bias, in the 1990s, she was impressed by his kindness and his brilliance. She also liked that he was a “doer.” “He was someone who lives his life with passion,” explains Bratton-Bias.

Within the first month, the couple became serious, and Bratton-Bias had a realization that surprised her. She’d always aspired to a loving, long-term relationship, but she had never been the type to moon over wedding dresses. Then suddenly, she saw her future, with Bias playing a starring role as her husband and the father of her children.

“It sounds corny, but it was like I’d been waiting to exhale,” she says. She realized the feelings and qualities she’d been missing from previous relationships. “We had very similar values, and family was very important to us, whether it was blood family or family acquired going through life.” They married in 2001.

But no love story runs smoothly, and the couple faced some particularly tough hurdles. Bias has severe hemophilia B and has had a few injuries that required years of rehabilitation. He has also been HIV-positive since 1982, when he contracted the virus through contaminated blood products used to treat his hemophilia. Still scarred by the death of his first wife in 1992, who contracted HIV from him, Bias had given up on having children, even though he had spent much of his early career working with young kids. “I was concerned and terrified that I would pass HIV along again,” says Bias, CEO of the National Hemophilia Foundation. “Robin reawakened the desire for children in me.”

Once they were married and had agreed on having kids, the couple investigated several methods. They considered sperm washing, but it would have been more difficult because Bias had had a vasectomy. Plus, storing HIV-positive material was illegal in California, where they lived at the time. Instead, Bratton-Bias underwent intrauterine insemination (IUI) with donor sperm several times. They even started the arduous and expensive process of in vitro fertilization (IVF). Bratton-Bias hoped to have one child through pregnancy and one child through adoption later on.

[Steps for Living: Family Planning: The Next Generation]

But after beginning the process of IVF, the couple’s reproductive plans were put on hold when Bias broke both his legs, precipitating a two-year recovery. By 2007, they decided to try adoption. They considered international adoption, but had heard it could take several years to find a child. It was also helpful that in the US, the Americans with Disabilities Act protects people with HIV or hemophilia from adoption agency discrimination.

They met with a US facilitation agency, which matches birth mothers with adoptive parents. Their profile was posted on the agency’s Web site in March 2008, and by July, a birth mother contacted them. Two and a half years ago, the couple adopted Langston Alexander Bias at birth. “He’s spectacular,” says Bratton-Bias, chuckling. “And of course I’m not biased at all.”

In their desire to have children, Bias and Bratton-Bias are not alone among serodiscordant couples—those in which one partner is HIV-positive and the other is HIV-negative. According to a June 2011 article in the American Journal of Obstetrics and Gynecology, more than 50% of these couples want to have children. A growing body of evidence suggests it’s possible for serodiscordant couples to conceive without passing the virus on to the mother or child. And the options for how to bring a child into their families have grown.

“Now is the golden era for serodiscordant couples,” says Deborah Cohan, MD, MPH, associate professor of obstetrics, gynecology and reproductive sciences at University of California, San Francisco’s Bixby Center for Global Reproductive Health. “There are a lot of different options available today for safely getting pregnant, and couples need to figure out which is best for them.”

Always a Risk

In 1990, the US Centers for Disease Control and Prevention (CDC) recommended against inseminating women with semen from HIV-infected men, after an HIV-negative woman contracted the virus from her husband, who had hemophilia and was HIV-positive. But since then, highly effective HIV antiretroviral therapies, such as Atripla, TPV, raltegravir and etravirine, have changed the playing field.

Some people, like Bias, now have undetectable viral loads—the amount of HIV in a person’s blood. Research has shown that viral load is the single most powerful predictor of HIV transmission. A 2011 clinical trial found that when a man faithfully takes his HIV medications and has a CD4-cell HIV count of less than 50, only 0.8% of HIV-negative women contract HIV through unprotected sex. The risk for couples who use reproductive technology is even lower.

The risk isn’t zero, however, because, while sperm do not carry HIV, it can live in semen. And, the viral load in seminal fluid can be different than it is in blood. That, combined with occasional slight increases in viral load despite antiretroviral treatment, means there is always some risk when an HIV-positive man’s sperm is used for conception. The only way to ensure that an HIV-negative partner stays that way is to use donor sperm or adopt.

Zero risk isn’t always a couple’s goal, however, Cohan says. “Women in serodiscordant relationships, by nature of being involved with someone with chronic medical conditions like hemophilia and HIV, are obviously willing to accept some level of risk,” she says. “Many medical providers underestimate the amount of risk women are willing to take.”

In fact, Cohan is now conducting an online survey of HIV-negative women in serodiscordant relationships that shows, so far, that on average, women are willing to risk contracting HIV to get pregnant if the risk is 1 in 10,000 or less. But everyone is different, and the option a couple chooses will depend on how comfortable they are with risk.

Assessing Options

When the World Federation of Hemophilia (WFH) released the second edition of its monograph on conception in HIV-discordant couples in 2008, it listed these four options:

Timed, unprotected intercourse
In this method, an HIV-discordant couple has unprotected sex while the woman is ovulating. This is the lowest cost and most low-tech option, but it also carries the most risk. A 1997 Lancet paper found that women had a 4.3% risk of contracting the virus—but this was largely before antiretroviral therapy. A 2005 study in Spain followed 393 couples for 12 years and found that none of the HIV-negative partners contracted the virus if their partners were on antiretroviral treatments. Couples in which the HIV-positive partner was not on antiretroviral treatment had an 8.6% chance of passing on HIV.

Sperm washing and IUI
In this method, sperm are separated from semen in a lab. The sperm are washed twice and then inserted into the woman. Often, the woman has taken a hormone known as human chorionic gonadotropin (hCG), about 34 to 40 hours before fertilization, to stimulate the release of her eggs.

While the CDC recommends against inseminating HIV-negative women with the washed sperm of their HIV-positive partners, the American Society for Reproductive Medicine endorses treatment. Sperm washing with insemination is a more costly option than timed intercourse, but it’s also safer, with the risk of infection at 0.1% to 0.5%. Costs run about $1,265 per attempt, according to the March 2011 American Journal of Obstetrics and Gynecology. Because the average couple tries this about three times before they conceive, that’s about $3,542 to get pregnant.

Washed sperm and IVF
Unlike IUI—which involves injecting the sperm into a woman’s uterus with the hope that fertilization will happen naturally—with IVF, washed sperm is used to fertilize the woman’s eggs in the laboratory. Usually, a woman has taken hormones to induce ovulation of several eggs. Then, the fertilized embryos—usually more than one to increase the odds that the woman will carry one child to term—are implanted through a catheter into the woman’s uterus.

This option is the most likely to result in success, with a 38.1% pregnancy rate per procedure, depending on the number of embryos implanted and the quality of the eggs, according to a June 2011 paper in the American Journal of Obstetrics and Gynecology. It’s also considered very safe, with 0% to 0.4% chance of transmitting the virus. But it’s among the costliest, coming in at $12,513 per attempt. The average number of attempts is 1.4, according to the American Journal of Obstetrics and Gynecology.

IVF does not come without risks. While the average rate of birth defects for natural conception ranges from 3% to 5%, a 2009 review of the literature found that children conceived through reproductive technology, including IVF, had a birth defect rate of closer to 4% to 7%. With IVF itself, there’s a slightly increased risk of birth defects, ranging from 0.55% to 0.75%.

Artificial insemination using donor sperm
In this option, the couple buys frozen donated sperm or obtains fresh sperm from a known donor, and then performs IUI or IVF to achieve pregnancy. The Sperm Bank of California lists the average cost of one vial of sperm at $630 to $785, with several vials necessary for each ovulation cycle. Though conception rates vary by age of the mother, one study listed pregnancy rates per woman through IUI at 66%.

In addition to these four options, Cohan says there are two emerging options for HIV-affected couples:

Sperm washing with IVF-ICSI
Intracytoplasmic sperm injection (ICSI) is the next level in IVF safety. In this technique, couples undergo the process to harvest eggs from a woman for IVF and the man’s sperm is washed. But unlike regular IVF, in which the sperm and eggs are placed together for natural conception to occur, in ICSI, a doctor takes a single sperm and inserts it into an egg in the lab. Often, doctors will create several embryos this way and then implant the fertilized embryos into a woman’s uterus.

Like IVF, IVF with ICSI carries higher rates of birth defects than natural conception—a review in the June 2005 issue of the International Journal of Epidemiology found that the risk of birth defects is 1.12 times higher than it is for IVF alone, though it’s unclear why. Still, the study authors state that this is not a significant increase in risk. Although it’s the most expensive, at $15,128 per attempt, it’s also the safest in terms of risk of HIV transmission, with a transmission rate between 0% and 0.04%.

Pre- and post-exposure prophylaxis (PrEP)
This is the most experimental form of conception for serodiscordant couples. In it, the HIV-negative partner takes antiretroviral treatment prior to or after a pregnancy attempt to try to suppress any HIV infection in the semen. This approach is part of a growing body of research that shows that antiretroviral treatment may have preventive effects on people without the disease.

Recent studies found that PrEP can reduce the risk of HIV transmission by 44%. What’s hopeful about PrEP is that it’s a lower-cost option for couples and can be used in conjunction with any conception option from unprotected sex to IVF-ICSI, says Cohan.

But the science is contradictory: A recent study in Africa known as the Partners PrEP Study found that HIV-negative partners who took one antiretroviral medication, Truvada®—a combination of tenofovir and emtricitabine—were 73% less likely to contract HIV. The study was conducted by University of Washington researchers. But in a study that hasn’t been published yet, Cohan says, women taking Truvada were no less likely than women not doing PrEP to contract HIV. “I don’t think this is the nail in the coffin for Truvada, but it was a big setback and extremely disappointing and unexpected,” says Cohan.

Paying for It

IVF and IVF with ICSI are the most expensive ways a couple can get pregnant, and how to pay for it is something that many grapple with. For Vaughn Ripley, 44, and his wife, Kristine, of Brunswick, Maryland, this was literally the $100,000 question. Ripley, a vice president of a Virginia IT company, has mild hemophilia A and was diagnosed with HIV in 1986 after using contaminated blood products to treat his hemophilia. In 2000, he and his wife began putting together the financing to travel to Italy for IVF with ICSI. They expected it to cost $100,000 for just one cycle. As far as they knew, it wasn’t available in the US.

But then the couple discovered a facility in Boston that does the procedure: the Bedford Research Foundation’s clinical laboratory. By doing the procedure in the US, the Ripleys’ insurance plan would cover almost all of the first cycle and portions of subsequent cycles. The final price tag, after five tries with IVF, was close to the $100,000 mark. The couple was rewarded twice for their financial investment—with Trinity, 6, and Xander, 3.

“It’s kind of funny that we’d planned to spend $100,000 on just one cycle, but we weren’t successful the first three times,” Vaughn says. “We spent years thinking we wouldn’t be able to have a child and then, out of the clear blue, we could. The cost was worth it for us.”

The same was true for Carol Madeiros, a pharmaceutical representative in Mayfield, New York, who became pregnant through IVF for the first time in 1998. Madeiros has von Willebrand disease, and her husband, Larry, had severe hemophilia B and HIV. He died from HIV complications in 2001.

When the couple first started considering children in 1995, a fertility doctor told them they shouldn’t have a child—not because Larry was HIV-positive, but because he had hemophilia. Instead, the couple found a new doctor. Around the same time, Abbott, the company Carol works for, increased fertility coverage to four lifetime IVF cycles. “It was almost like it was meant to be,” she says. The couple decided to go for IVF. They conceived two children: Ashley, 13, and Taylor, 11.

In some cases, insurance will cover IUI and IVF. It may depend on state laws and whether you meet your insurance company’s definition of infertility. The key is to talk with your fertility doctor and your insurance company about your options.

Personal Choice

For Dan and Susan Hartmann of Oakland, California, the decision to have a baby came after a long and thorough process. Dan, who has severe hemophilia A, was diagnosed with HIV when he was 12. He contracted the virus from contaminated blood product he was infusing to treat his hemophilia. In ninth grade, two major things happened in his life: He announced to his school that he was HIV-positive, and he and Susan Slingluff were placed in the same earth science class. He was smitten with her, but much to his disappointment, the pair didn’t date much in high school.

Decades later, Dan looked up Susan on the Internet. He was in New York. She was in San Francisco. But soon after they reconnected in 2000, they became serious. Right away, even before they got married in 2006, Susan wondered about having kids. “We wanted to have a family,” she says. “But we didn’t know how it would happen.”

They began to weigh their options, risks and costs. It became clear that most options would be out of their price range. They thought of asking family members if they would be willing to donate money to the cause if they decided to pursue insemination. But, they decided against that plan.

Finally, in 2008, the Hartmanns settled on what seemed like a crazy option to them, but one that the WFH monograph addressed: unprotected sex. Dan’s viral load had become undetectable in 2005, and the couple had pored over the evidence available to them. “We could just do this,” Susan remembers telling her husband. “There are couples and women with HIV who get pregnant all the time and have healthy babies.”

Once decided, they went about conception nervously. Five times over two successive months, the couple had unprotected sex while Susan was ovulating. They agreed that if, after any attempt, Susan decided it was too much of a risk for her, they would stop and consider other options.

Although the couple is glad they took this option, they know it’s not for everyone. It’s something to consider with caution and only after long thought. Even though they were successful and Susan remains HIV-negative, the couple is clear that their path may not be right for everyone.

“Even to someone with my same viral load, I wouldn’t necessarily recommend our route,” says Dan. “Your comfort level with risk could be different from ours.”

Bearing Fruit

For her part, Susan never changed her mind about the risk she was taking. Their daughter, Ryan Nicole Hartmann, was born 18 months ago. With her strawberry blonde hair and blue eyes, she doesn’t look much like her darker-haired parents. But she does look like her father when she’s cranky, Susan says. “There’s this funny picture of Dan when he was 3 or 4 where he’s making this incredibly grumpy face,” she says, laughing. “I’ve seen that grumpy face for the last 18 months.”

Susan says the decision of how to bring a child into your life is individual and based on a lot of honest discussions about what feels safe. “HIV is always the elephant in the room,” she says. “You have to sit down and have some frank, hard, real conversations about risk, expectations and desires. You have to look at all the nuances.”

This includes discussing how long an HIV-positive parent may live and what the couple would do if one partner transmitted HIV to the other. This was something that Carol Madeiros and her husband considered carefully. Even without her husband now, Carol says she wouldn’t change her decision. After all, her husband lives on in Ashley, who has Larry’s positive spirit, and in Taylor, who has Larry’s analytical side.

“If I didn’t take this risk, I wouldn’t have these two beautiful children,” she says. “I’m much more of a what-if type of person, but that’s not how Larry lived. Now my wisdom is always, never give up.”

Learn More