Early in the epidemic, people with HIV wrestled with the idea of having children, since there was a 25% chance the infant would be born with HIV. For some women and potential fathers, those odds were too high. Dina M., quoted in a 1991 article in The New York Times, had planned her pregnancy. But then she had second thoughts and had an abortion. "I just didn't know what to do. If I kept the baby my life would have probably ended. If I had the baby, there was the possibility that the baby wouldn't last very long." In the same article, one woman said her doctor in Manhattan, whom she had seen for six years, told her she did not feel "emotionally" she could deliver her baby and referred her elsewhere.
But the results of PACTG Study 076, released in 1994, showed that HIV treatment could dramatically reduce (66%) the chance of an HIV-positive mother passing the virus to her child. Subsequent research and clinical practice have resulted in lowering that risk to less than 1%. In New York State, for example, the number of cases of transmission during pregnancy has declined from 97 cases in 1997 to just three in 2010 -- a transmission rate of 0.7%.
Those odds are far more appealing, and the decision to become pregnant for people with HIV now focuses more on the issues that any couple faces: "Can I care for this child? Can I afford to raise a child? How can we get pregnant without harming our health, or the health of the person with HIV?" This last question is of particular importance for serodiscordant couples, in which one partner has HIV and the other does not. But even couples who both have HIV are often advised to always use condoms, to reduce the possibility of transmitting drug-resistant strains.
Fortunately, people with HIV now have a number of options when it comes to pregnancy. Unfortunately, some of these options are often out of reach financially for many people. And they may face opposition from friends and family. A 2007 amfAR online survey of people in the U.S. found that only 14% of those between 18 and 44 felt that women with HIV should become pregnant, and a third of all respondents said they would not support that decision at all.
The "Women Living Positive Survey" included 700 women with HIV from across the U.S. When asked about pregnancy, 61% stated that women with HIV can have children if they have the appropriate support. But 59% also felt that society strongly urged them not to have children. In addition, 57% of those who became pregnant did not discuss treatment options with their provider before they became pregnant. They often found information online instead, which, as the post from "Margarita" below shows, can be risky:
"It is very possible to have a child while one partner is positive and the other is negative. As long as the negative partner maintains an undetectable viral load, and you both lead a healthy lifestyle, i.e. exercise, proper diet, limit alcohol use and absolutely no drugs ... even weed, the chance of infection is very low. As an alternative, think about purchasing a juicer! Try juicing fresh veggies and fruits to boost both immune systems. Kale, Carrots, Oranges, Blueberries, Cranberries ... juice at least 3 times a week, you both will see and feel a difference."
Clearly, a completely unproven statement like this needs to be discussed with a care provider. Many in the study had to make changes to their regimen after they became pregnant, instead of learning about their choices beforehand. In her presentation on the study at the Vienna International AIDS Conference in 2010, Dawn Averitt Bridge stated:
"We have laws in place in the U.S. that prevent fertility treatments for HIV-positive women. The assisted reproductive technologies are quite good but, unfortunately, not available to many women and men ... And it's a huge problem. Many of us chose not to have children many years ago, because we were either told we were crazy, or the risks seemed too high. And because people have gotten older, because you had long-term HIV disease, whatever the reasons are, fertility has become a very big issue and a big problem."
The Ethics Committee of the American Society for Reproductive Medicine has stated that health care professionals may be legally and ethically obligated to help women with HIV who choose to become pregnant. They can refer patients to other facilities if they lack the expertise themselves, but a blanket statement of not offering care is no longer acceptable. In 2010, California mandated that all fertility centers provide appropriate fertility interventions to people with HIV or refer the couple to a center that offers such services.
The health of both partners should be evaluated and any problems should be addressed with their primary care provider. There are three different scenarios, and each one has unique issues and choices that affect the man, the woman, and the infant:
(It's important to remember that the infant can only acquire infection if the mother has HIV. If the father has HIV and the woman does not acquire it, there is zero risk of infection to the infant.)
In general, the partner with HIV should be taking HIV medication to ensure an undetectable viral load and raise the CD4 count as this decreases the risk of transmission in all three scenarios. If the woman is menstruating there is an increased risk of her transmitting the virus to her partner or for her acquiring HIV. For a man with HIV, there is likely a positive correlation between total sperm concentration and CD4 count. A 10-year study looking back at 181 men found that 42% had an abnormal semen analysis with at least one reading in the subfertile range. Fertility issues occur in both women and men with HIV. In addition, semen testing in men taking HIV meds has found a lower ejaculate volume, decreased sperm movement, and increased abnormal sperm. So some form of fertility testing for both partners may be a smart first step. After that, the couple must decide which of several methods to use.
This method protects either partner from getting HIV through sex. Most experts agree that HIV does not infect sperm cells. That makes it possible to use the sperm removed from the semen of a man with HIV safely. Two methods are most commonly used. In "density-gradient centrifugation" a sperm sample is mixed with a nutrient medium in a test tube and spun in a high-speed centrifuge. Sperm end up in the bottom layer of liquid and other cells which might be infected, remain in the upper layer.
This method can be further enhanced by the "swim-up technique". The washed sperm are placed in a petri dish and covered with culture medium (a liquid used to keep cells alive). Only the healthiest sperm swim into the medium, leaving other cells and HIV behind.
A 2007 study of eight sperm-washing centers in Europe, including over 1,000 couples, reported: "No female seroconversion occurred following treatment ... allowing us to calculate the probability of contamination risk to be zero." Overall, there have been no cases of a woman being infected with HIV in over 6,000 cycles of sperm-washing reported to date. Each sperm washing cycle costs between $100 to $300, and pregnancy rates are 15-20% per cycle.
But at least six states have laws preventing the use of sperm from men with HIV in artificial reproductive techniques. Even in states without such laws, some clinics may refuse to provide services to people with HIV, but people should continue to investigate reputable health care facilities.
Once the sperm have been separated from the semen, they must be placed in the vagina. Known as insemination, this can be done either by a doctor or at home. If done by a clinic, the cost is about $300 to $500 or higher per attempt. Since many couples can't afford that, some do it themselves. Sometimes called the "turkey baster" method, this should be done when the woman is ovulating (ovulation tests are available without a prescription).
If you have difficulty in conceiving or if your partner has a low sperm count, couples can opt to try in vitro fertilization (IVF) together with sperm washing. IVF entails removing eggs from the woman and fertilizing them with the man's sperm in the laboratory. The fertilized egg is then implanted in the woman. It's considerably more expensive than insemination: over $6,000 per cycle. The success rate after sperm washing is about the same as it is for HIV-negative semen: around 12% for insemination and just over 30% for IVF.
All of the above methods have been tested and are generally accepted by the medical community. But what about unapproved methods, like just taking off the condoms? This is the unspoken reality for many couples. Many doctors will not publicly discuss it due to the risk of transmission. In fact, one advocate with knowledge of this practice refused to be publicly interviewed for this article due to fears it would lead to his program's funding being cut.
But couples certainly are doing this, as noted in this forum post from a man who identifies himself only as Mauro:
"I am HIV positive. My partner is HIV negative. We have two beautiful daughters. Both conceived naturally. Both, like their mum, are HIV negative. We initially considered sperm washing, but we would have needed to use artificial insemination. This was extremely expensive and involved travelling and giving my partner hormone injections. This was not the way we wanted to have a baby. We decided that the risk of transmission with someone who was undetectable for many years, extremely adherent and had no STIs was very low. So we bought a cheap ovulation test and did it naturally ... and it worked ... twice!"
An unnamed woman wrote this at thebody.com:
"My husband is positive, I am negative. I have contacted local labs to see whether they could help with sperm washing but have not had any luck. The only way is to pay over $3000 to send the sperm overnight to a facility that will process the sperm and check if it is undetectable and have it sent back, then an additional $10,000+ for IVF. Since this is not an option -- next cycle I will use HIV meds and take my chances. I think it is really sad that there are so many of us wanting to have a child so badly that we are willing to put ourselves at risk. I feel I am playing Russian Roulette with my life and wish I could find an alternative solution to this."
In Italy, Enrico Semprini was one of the first to promote artificial insemination for serodiscordant couples. But according to Pietro Vernazza, of Switzerland's Cantonal Hospital, "about one third of the women who came for the first consultation would never show up for an insemination. And within Europe, all the centers have about one third noshows -- people who just don't follow up. Semprini followed up with them. And among the 500 couples, 250 are parents now ... We were sort of accepting that a major group was taking the risk and having unprotected sex. So we thought: It's okay. The risk is very, very low. It's probably in the range of one in 100,000, or one in one million. That's about the risk that you take when you mount an airplane."
To lower the risk as much as possible, Vernazza recommends these steps:
His study of 53 couples in which the man was HIV positive reported pregnancy rates of 50-75%, depending on the number of attempts. According to Vernazza, "It's certainly better than with the insemination practice, where we reach 40%." None of the women in the study were infected.
Much of the impetus for couples taking off the condoms comes from a study known as HPTN 052. It enrolled 1,763 couples (97% heterosexual) in which one partner, the man or the woman, had HIV, was not taking HIV meds, and had a CD4 count between 350 and 500. Half of the positive people in the study began HIV meds immediately, and half waited until the CD4 count dropped below 250.
The study was meant to run five years, but was stopped early due to the dramatic results. Of the 28 cases of HIV transmission in the study, 27 occurred in those who delayed treatment. That means that starting HIV treatment early reduced the risk of transmission by 96%. That's definitely lower -- but it's not zero.
In Madrid, Pablo Barreiro looked back at 74 serodiscordant couples (52 with positive men and 22 with positive women). They were advised to have intercourse only when the woman was ovulating, and only after the partner with HIV had an undetectable viral load for six months. 75 children were born, and no cases of HIV transmission to the partner or child were reported. Studies have shown, however, that some men with undetectable viral loads still have HIV in their semen, so all were advised that the risk of transmission was not zero.
If both partners are positive, the only risk to the adults is being superinfected with the partner's strain of HIV, which may be resistant to the meds the other partner is taking. If both partners are on HIV treatment and have undetectable viral loads, this risk is dramatically reduced. Both should be checked for STIs beforehand.
But there is still some uncertainty as to the risk of maternal HIV therapy, whether it be for treatment of her own infection or for PrEP, on the newborn, either early on or as that individual ages, and goes through different developmental stages. Some of this vagueness is due to the lack of long-term studies of the effects of HIV medications taken during the earliest stages of pregnancy on the newborn. It is also important to remember that the potential risk of toxicity to the newborn is greatest if exposure occurs during the first trimester of pregnancy. Unfortunately, most of the information concerning these risks is being collected through the Antiretroviral Pregnancy Registry (apregistry.com), which is voluntary and non-comparative.
Lastly, if the woman becomes pregnant and is HIV positive, it is important that she be followed regularly through pregnancy. Adherence is difficult, especially during the first trimester when nausea and vomiting are common and can be severe. Drug levels of many of the therapies are affected by pregnancy and may need to be altered at different times during the pregnancy. Optimal care is best done by a partnership with a knowledgeable clinician.
The bottom line is that having a baby when you have HIV is possible, but only safe when done in consultation with a medical provider who is an expert in this area. Simply taking off the condoms or attempting artificial insemination at home without medical advice is risky and often not effective. Discuss all your options with your care provider, clearly assess the risks, and use the approach that's best for you.
Mark Milano is the Editor of Achieve.