The Positive Side

Summer 2021 

The Parent Trap

An increasing number of people living with HIV want to become parents. In the age of “Undetectable = Untransmittable” (U=U), why are they still facing stigma and discrimination?

By Alexandra Kimball

MG Raposo*, 50, always wanted to be a dad. Before immigrating from South America to Toronto in 1980, he grew up in a bustling household. “I’m the baby in a big family of 12,” he says. “My house was a neighbourhood hangout. I love children.” As a gay man living with HIV, though, he had thought parenthood was “unrealistic.” It wasn’t until he was in his 40s that he reconsidered his dream of being a father. He was in good health with a stable job and a solid social network. He felt ready. “I was done living la vida loca,” he laughs. “My ex-roommates had adopted a little girl and I started asking them questions about adoption.” He researched the Children’s Aid Societies (CAS), which are government-approved agencies providing foster care and adoption for Canadian children. Through CAS, adoption is possible even if a parent is single, gay, or living with HIV.

At first, things went smoothly. “I had a great social worker,” Raposo says. As part of the process, the social worker conducted a home study. They assessed Raposo’s parenting abilities by interviewing him, his friends and family members. They also made home visits to confirm his residence was safe for children, and they reviewed his finances. Raposo passed the home study and a criminal background check, but he hit a roadblock when he asked his doctor to confirm he was healthy. “He said, ‘I’d approve you to adopt a dog,’ but it wasn’t fair for me to bring up a child if I had a shorter lifespan,” Raposo remembers. “I felt like the ground disappeared under my feet.”

A month later, Raposo was in the emergency room for an unrelated incident. An HIV specialist happened to be on duty, and they started talking. Raposo mentioned that his doctor had refused to write a letter, and she told him that was wrong. “She said, ‘Why not?’ She wrote me a letter and gave it to my social worker,” says Raposo. With the letter, he was approved for adoption. Two years later his son, Terrance, was placed with him at 18 months old. By adoption standards, this was very quick. “It’s the best thing I’ve done, being a dad,” he says. While single fatherhood can be challenging, he has a strong support network. “He’s with me all the time,” Raposo beams. “My friends know, if we go to dinner, my child is coming along.”

Barriers to care

Since 1996, people living with HIV have been protected from discrimination under the Canadian Human Rights Act. Despite this, stigma persists. Canadians living with HIV still face social and political barriers. For example, people who do not disclose their HIV status to their sex partners in certain contexts can face criminal charges. Family building is another area where people living with HIV can be marginalized. Many experts agree that as people with HIV live longer, healthier lives, more of them are interested in becoming parents. This includes gay and bisexual men who may not be aware of their options. In 1995, CAS approved gay and bisexual men for fostering and adoption. Since then, adoption has been a common form of family building for gay couples and single gay and bisexual men. However, a 2018 study of HIV-positive gay and bisexual men in the UK found that while over half wanted to become fathers, their healthcare providers “rarely” talked about parenting options.

The reality for people living with HIV, no matter their gender or sexual orientation, can be very complex. In 2014, researchers in the Women and HIV Research Program at Women’s College Hospital surveyed 75 Canadian adoption service providers. They assessed any barriers HIV-positive people might face. While 64 percent said that people with HIV could adopt with them, 23 percent weren’t sure.

The study also found that some forms of adoption had more barriers than others. For example, HIV-positive people could not apply for any international adoptions because of policies in the host countries. In Canada, private adoptions—which arrange adoption directly between a Canadian birth family and the prospective parent(s)—were also difficult. This is because an applicant’s health history is shared with birth families. This means that these families could discriminate against people living with HIV. The study found that public adoptions through CAS, like Raposo’s, were the most accessible to HIV-positive people. However, when researchers did a follow-up study of people’s experiences through the adoption process, they found that obstacles remained. These came from social workers, family doctors, and administrators who may lack knowledge around HIV.

“There is a lack of knowledge and awareness about HIV among service providers,” says Angela Underhill, PhD candidate and co-author of the study. “Somebody who was really worried about the process may call an agency to find out if they are eligible and be told ‘I don’t know’. This could discourage them from trying other providers,” she explains. Uninformed doctors, like Raposo’s, may refuse to give medical clearance for an applicant. And for people trying to adopt outside their specific region, their health information is shared even if they’ve already been approved in their home province. “There were extra challenges throughout the process, and opportunities for bias and discrimination,” Underhill says.

Regardless of their gender, many HIV-positive people may want to have biological children. The good news is that people living with HIV can safely become pregnant if they are on effective treatment. If they have an undetectable viral load before pregnancy and maintain this throughout, there is no risk of transmitting HIV to their baby through pregnancy or childbirth. Dr. Deborah J. Money, professor of obstetrics and gynecology at the University of British Columbia, recommends seeing a doctor before trying to conceive. “This is to see if there are any challenges with your HIV,” she says. For example, someone’s HIV medication and viral load may need to be reviewed. “Secondly, there are other steps to pregnancy planning that affect everyone. These can be simple things like taking folic acid before conception, or more complex issues like older age, high blood pressure, obesity, and smoking.” For trans people living with HIV, biological parenting is also possible with effective treatment. But Money points out that “the overall barrier is getting the right expert advice.” Trans people face high poverty rates because of stigma and discrimination, and it can be hard to find experts on both trans health and HIV.

Surrogacy in Canada

Surrogacy is an alternative parenting option for people living with HIV, but it can present its own challenges. Lawrence Cutler and Jethro Green are a Toronto couple who have been together for 12 years. In 2015, they decided to expand their family. “I grew up in a large family, so home always included children for me,” explains Cutler, who was diagnosed with HIV in 2010. “Initially we thought of adoption,” he says, “but we were told that the only children available to adopt had developmental disabilities. That wouldn’t have been fair since we are older and couldn’t care for the child indefinitely.” The couple could have been foster parents, but they had concerns. They knew that Canada has a policy of family reunification. This is where each province tries to reunite foster children with their birth family before placing them for adoption. Cutler worried that “we could bond with a child and then see it go back home.” Like a growing number of gay couples worldwide, they decided to try surrogacy.

Since the mid-2000s, Canada has been a hub for people who want to have biological children through gestational surrogacy. This is where someone outside the immediate family carries a pregnancy for people who want to become parents, using an embryo made outside the body. In this process, known as in vitro fertilization (IVF), an egg is fertilized with sperm in a lab and then put back into a uterus. Canada also allows same-sex couples and single people to work with surrogates, and the process is more affordable than in other countries. This is because sperm or egg donors and surrogates can only be reimbursed for costs directly related to the surrogacy process.

Cutler and Green live in Ontario, where provincial insurance funds one IVF cycle per person. But because Green was not an Ontario citizen, he was not eligible for funded treatment. As a result, the couple used Cutler’s sperm. They didn’t expect any problems, because his viral load was undetectable. But after creating five embryos using eggs from a local donor, they struggled to find a surrogate. They signed with two different agencies who promised to find them a match, but the pair kept hitting roadblocks. Normally, the process takes a few months to a year, but the pair spent four years trying with no success.

The couple paid $15,000 total in “matching fees” upfront. They knew that once an agency provided them a match, they could not get a refund. “We matched with a few surrogates,” Cutler says, “but they had fertility problems. They wouldn’t have met the clinic recommendations.” The agencies knew of Cutler’s HIV status, and he wasn’t sure if it factored into the matching process. Were the agencies not passing their profile to surrogates because he was living with HIV? Or were surrogates rejecting their profile once they saw his status? Were the surrogates even informed about U=U? “We were getting frustrated and suspicious it had something to do with my status,” Cutler explains. “Were we being strung along?”

In 2019 the couple matched with a surrogate on their own through a Facebook group. But they found that Cutler’s HIV status kept coming up in ways that troubled them. “Our doctor had to tell the surrogate of my HIV status, which was a little strange because I’m undetectable,” he explains. The couple were especially worried about this disclosure when the surrogacy failed. “It’s a violation of privacy that is completely unnecessary,” he says. “These people aren’t in our lives, but now they have this stigmatizing information.”

Changing regulations

Sperm and eggs from people with an undetectable viral load have been approved for IVF since 2013. Because surrogacy uses IVF, they are also approved for this process. Despite this, there is still a lack of knowledge around U=U in the surrogacy industry. This means intended parents like Cutler are at a disadvantage. Surrogacy agencies report that more people living with HIV want to have babies via surrogacy, but this knowledge gap still creates barriers.

“Our clients include a number of intended parents where one or both partners live with HIV,” says Linsay Ambeault from JA Surrogacy Consulting in Calgary, Alberta. Her agency has worked with surrogates who carried babies for people living with HIV. In her work, though, “one issue we’ve run into consistently is the lack of good-quality research on HIV and surrogacy.” Materials do exist, she says, but they tend to be from the United States. This means clinic recommendations may be different. As a result, she says U=U is “an unheard-of concept in the surrogacy world.” Well-meaning surrogates may refuse a person living with HIV simply because they don’t know the current science.

The policies of fertility clinics can also affect intended parents living with HIV. Surrogacy in Canada is governed by the Assisted Human Reproduction Act. Until recently, this law was vague about how clinics should store and treat sperm from people living with HIV. As a result, many clinics thought they were unequipped to serve HIV-positive people. New regulations to the Assisted Human Reproduction Act were introduced in 2020: the Safety of Sperm and Ova Regulations. These clarified the use of semen from people living with HIV in IVF as well as sperm donation. “People living with HIV can donate sperm now and there’s a general consensus that reproduction is safe for them,” says Sara Cohen, a reproductive lawyer in Toronto. “However, doctors are still required to tell surrogates that the embryo they will carry has been created with HIV-positive sperm,” she says.

These regulations have raised questions among HIV experts and fertility doctors. They say that the new regulations don’t distinguish between detectable and undetectable viral loads in semen. As Cutler explained, forcing doctors to tell surrogates about someone’s HIV status is discriminatory. Also, many doctors don’t know how to apply the new regulations to surrogacy. Tom Hannam is a reproductive endocrinologist and director of Hannam Fertility Centre in Toronto, which serves a large LGBTQ population. He says that surrogacy for people living with HIV under the new regulations is “much more difficult.” “This was never the intent,” he says. “It was supposed to make surrogacy more accessible and make it easier for people to work with known donors.” The new regulations were also rolled out at the start of the COVID-19 pandemic, which slowed down fertility services overall. “The challenge is matching the medical system to the legal system,” he explains.

The slow, complicated pace of progress for future parents living with HIV is frustrating for experts. But the burden of this is carried by the people who long to have children. In Cutler and Green’s case, it was too little, too late. After their failed surrogacy attempt in 2019, the couple decided to call off their journey. They donated their remaining embryos to their fertility clinic for research, which Cutler describes as deeply painful. “The sad part is someone had donated a lot of baby equipment to us,” he tells me. It’s one of many setbacks he’s faced as a man living with HIV, even in a country known for its progressive medical system. “Living with HIV made me appreciate the painful effects of stigma, even when science says I am not a threat to anyone,” he says. “I was not prepared for this stigma to still exist in the surrogacy world.”

For Raposo, the challenges he faced have made him more aware of how insidious the effects of stigma are—and more determined to keep fighting them. “From that experience, I always tell my son to go after his dreams and never let anyone tell him otherwise,” he says. He is also encouraging to other people living with HIV who want to become parents. “HIV doesn’t make who you are and never let anyone tell you the contrary,” he says. “You deserve and have the right to be a parent like everyone else.”

Alexandra Kimball is a journalist and non-fiction writer based in Toronto. Her first book, The Seed: Infertility Is a Feminist Issue, was published in 2019 by Coach House Books.

Illustrations by Katy Dockrill.

*Raposo, like the other people living with HIV in this story, has asked that we use a pseudonym.