What would you do if you desperately wanted to have a baby, and your spouse had HIV?
In the mid-1990s, the introduction of highly-effective HIV drug regimens turned HIV from a death sentence into a chronic condition. People with HIV and their life partners could begin to imagine creating families and living to see their children grow up. But it was not until 2014 that researchers and policy-makers approved a prophylactic regimen that effectively protects against HIV-transmission even without condom use. (It still is not officially condoned for family-building purposes, but some physicians are willing to prescribe it for that purpose.) For almost two decades, HIV-discordant couples faced a special kind of infertility: it was childlessness caused by the threat of illness, by fear, and by a traumatized, cautious public health and medical community that could not move beyond its initial message, that “only condoms prevent HIV transmission.”
A new e-book, Positively Negative: Love, Pregnancy, and Science’s Surprising Victory over HIV, takes us into the lives of two couples who lived this history. Journalist Heather Boerner persuasively argues that social reality needs to catch up with medical advances: people with HIV are now living long, productive lives with a manageable chronic illness. They should be able to take advantage of the promises of recent medical breakthroughs in order to marry who they love and bear children.
The couples Boerner features each spent about a decade agonizing over whether to have a child. It had been tough enough to know, going into their marriages, that they were never absolutely safe from HIV transmission, though they used condoms conscientiously. Some risk was ever-present. But the condoms served both a practical and a ritual purpose: they really did reduce the chances of transmission, and at the same time, they provided emotional reassurance. And public health materials advocated condoms in an all-or-nothing way. Use condoms, stay safe; skip them, get sick. It seemed unimaginable to have sex without a barrier.
In the early 2000s, both couples received counseling on alternatives to traditional conception: adoption, artificial insemination with donor sperm, or in vitro fertilization with sperm-washing. Both couples felt strongly about having a child who would be genetically related to both mother and father. Sperm washing combined with IVF would make this possible, but it was tremendously expensive. In California, where one couple lived, it was illegal, an unfortunate side-effect of a 1989 law banning sperm donation from HIV-positive men.
During the years these couples agonized, a few clinician-researchers started to experiment with protocols to allow HIV-discordant couples to conceive the old-fashioned way. They were piggybacking on studies of HIV transmission in HIV-discordant couples. These studies had shown that highly active antiretroviral treatment (HAART), available since 1995, could reduce detectable viral load to almost zero, and researchers hoped that the drug regimen would dramatically reduce transmission as well. Researchers had also been investigating the possibility of using the drugs prophylactically, in HIV-negative people with HIV-positive partners. Both lines of investigation seemed promising.
Swiss clinician-researcher Pietro Vernazza, an HIV specialist, surveyed the state of knowledge in 2003, and decided that it was time to start cautiously offering his patients a new protocol. First, he would coordinate with the couple to be sure the HIV-partner’s infection was well-controlled with HAART, and that neither partner had an STI that could increase the chance of transmission. They would monitor the woman’s fertility, and she would take HIV medication as pre-exposure prophylaxis (PrEP) shortly before ovulation. The couple would have unprotected sex when conception was most likely. After, the woman would take pregnancy and HIV tests.
Vernazza’s patients were thrilled. But not everyone was happy with him. In 2008, when he issued a formal statement about his protocol, many researchers considered him irresponsible, perhaps even reckless. Sure, he had been successful thus far. But the results of a long-term, multinational study of HAART’s ability to prevent transmission was not yet complete. Vernazza did not have robust proof of the efficacy of his approach. And many public health advocates were nervous that Vernazza’s announcement would be taken as license to skip condoms all the time, among the many HIV patients who are not willing or able to take their medications conscientiously, because of mental health complications or drug addiction. The CDC maintained its position that those who were HIV positive should use condoms all the time, no matter what.
The couples Boerner features in Positively Negative struggled on. One testified before the California legislature and successfully helped engineer an exception on the ban of HIV-positive men’s sperm donations for HIV-discordant couples, only to discover that California fertility clinics still refused to perform sperm washing. The other learned of Vernazza’s research from an American HIV researcher, only to be rebuffed by her physician, who refused to prescribe the HIV drugs off-label so that she could use them as PrEP.
In the end, both couples conceived healthy children using Vernazza’s protocol, with the cooperation of empathetic physicians who were willing to let them make their own choices and take their own chances. But even with the support of these physicians, the years and years of struggle, and intimations that they were irresponsible for wanting to conceive, took a toll. One marriage went through a very tough time. The wives spoke of how tired, and angry, it made them that it took a decade of angst to feel empowered to go ahead and do what they could have just done at the beginning. And the process of conceiving was filled with constant fear and second-guessing. After what they’ve been through, they are unlikely to try for another pregnancy. In the end, there was joy at having a child, and relief at not being infected, but also bitterness.
In 2011, the long-term, multinational study of HAART demonstrated that it was very effective in preventing transmission. In 2012 the CDC acknowledged the beneficial use of HIV drugs as prophylaxis, and in 2014 issued detailed guidance for PrEP protocols. It still does not acknowledge “trying to conceive” as a legitimate use of PrEP.
In an epilogue, Boerner describes a conversation with a much younger woman who has had a baby with her HIV-positive husband. Her perspective seems so different from the featured couples’: she sees HIV as just another health condition to be managed. Sure, you have to take your pills, but as long as you do, it’s not that scary. She worries more about her husband’s knee problems than his HIV. And they are confident enough in HAART that they do not use condoms, never mind PrEP.
As Boerner points out, this is a new generation. They did not grow up in the 1980s, as Boerner and I, and many HIV researchers, did. AIDS was not the bogeyman used to scare teenagers out of sex, or at least into condom use. Younger people haven’t pictured a scenario in which one unfortunate sexual encounter could lead to an agonizing death a few months later. HIV is not stigmatized as it once was, or blamed on already-marginalized groups. This generation needs a multi-faceted approach to HIV. Yes, public health officials and activists should continue to urge condom use. Prevention is much better that treatment, and treatment often fails those who cannot adhere to a daily regimen. But treatment is also excellent, and HIV-positive people and their partners can be supported to have healthy families and good relationships. They need to be responsible, but they do not need to be burdened by the fear and trauma of the past generation’s experience of the infection before it was treatable.
Boerner wants to tell a story of “love” and “victory,” and on the face of it, this story certainly seems to have a happy ending. And all’s well that ends well, right? To me, though, the real lesson here is that public health and medical establishments move slowly, and people’s whole lives can be spent struggling in the gap between innovation and implementation. As a society, when it came to HIV and childbearing, we did not let couples make their own decisions and take their own risks. We did not really take infertility seriously, as a potentially devastating condition. We made it impossible for couples to decide that a small risk of HIV transmission was worth the possibility of building a family together. And we left those couples dangling for almost two decades, too long for many of them to ever bear children. In the future, will we do better in recognizing fertility and reproductive decision-making as a critical element of reproductive justice? Might we find a way to accommodate individuals’ thoughtful decisions about risk-taking, rather than making their decisions for them?