Sperm washing, assisted insemination & long hospital waits — if you were lucky. This is what falling pregnant when you were HIV-positive used to look like. But things are changing for the better.
Mandisa Dukashe, 43, watches her two daughters play with their brightly dressed barbie dolls. But her mind is elsewhere — focused on the science that made both her children’s births possible.
Imange, 9, looks at her five-year-old sister, Imyoli. “Let’s sing the song,” she giggles. She’s referring to the theme song of the blockbuster Disney movie that the two dolls represent: Elsa and her sister, Anna, from the film Frozen. “Let it go, let it go, can’t hold it back anymore…” the two girls break out in a chorus, their hands waving above their heads.
Imange and Imyoli are scientific miracles.
Their mother was HIV positive when both of them were conceived. But two different medical procedures made it possible for them to enter the world HIV negative.
Bringing home baby used to mean breaking the bank
Mandisa and her husband, Siya tied the knot in 2007.
Siya was HIV negative; Mandisa openly HIV positive. “The marriage came with cultural pressures,” Mandisa remembers. “In our culture, we’re expected to reproduce once we’re married.”
But to conceive naturally, the couple would have had to have unprotected sex and risk for both Siya and the child that they were conceiving to get infected with HIV.
They opted to conceive through intrauterine insemination (IUI) — a procedure in which sperm are placed in a woman’s uterus to facilitate fertilisation.
In families where the male partner is HIV positive, this means that the man can donate semen that would then be “washed” in a lab. While sperm doesn’t carry HIV, the fluid that surrounds it does — sperm washing separates these two and allows only the HIV-free sperm to be safely used in IUI. A 2016 review of more than 11 000 IUI sessions using sperm washing found not a single new HIV infection linked to the technique, research in the journal Fertility and Sterility shows.
Four years later, the couple’s desire to have another child grew again. For the Dukashes, however, the IUI procedure was unaffordable to repeat — the first time around it cost them almost R10 000.
But by then, science had evolved much further, and conceiving naturally was possible — without the risk of Mandisa infecting her husband or future child.
When knowledge really is power
In 2011, the New England Medical Journal published the results of a study conducted among almost 2 000 couples just like Mandisa and Siya in nine countries in Latin America, Asia and Africa, including South Africa. The research found that when HIV-positive partners started treatment early, it reduced the risk of transmitting HIV to their partners by 96%.
It was the first large study to prove antiretroviral (ARV) therapy reduces the chances of transmitting the virus sexually.
Mandisa and Siya are both nurses. In 2015, at work, they heard about these results and Siya suggested that the couple give conceiving naturally a try. Mandisa couldn’t believe what Siya was suggesting. “I was scared,” she remembers. “I didn’t want to infect him.” But Mandisa had been doing well on HIV treatment for years.
In 2013, after 11 years of using condoms without fail, they took a chance and, a year later, they were pregnant — Imyoli was subsequently born HIV negative.
Not that this settled their fear of Siya now being HIV positive. He went for testing more frequently than previously. Every test was met with anxiety that his status may have changed.
He remained negative.
‘It was a breakthrough dealing with my fears of losing my husband’
In the years after Imyoli’s birth, more research has shown that when people infected with HIV take their treatment consistently and correctly, they can bring the level of HIV in their blood down to levels so low that the virus becomes undetectable. Several strong studies have shown that when people have an undetectable HIV viral load, they cannot transmit the virus. The discovery is also known as “undetectable equals untransmittable” — in short, U=U.
For Mandisa, U=U didn’t just help her conceive but also addressed her fears that were engraved in her mind for more than a decade. “Generally, men are not good friends of condoms. So, when I discovered U=U, it was a breakthrough. I always had at the back of my mind that ‘what if’ my husband gets tired of this condom.”
“It was a breakthrough dealing with my fears of losing my husband in case he gets tired and decides to go and look for someone else who is HIV-negative,” she explains.
For every Siya and Mandisa, there are more mixed HIV status couples with questions about how they too can have a baby of their own without the risk of transmitting the virus. That’s why the University of the Witwatersrand’s research organisation, Wits Reproductive Health and HIV Institute (WRHI) gave them their own clinic in 2014.
Natasha Davies was the doctor who started the programme. Davies, who now is the head of the Anova Health Institute’s HIV/TB hospital strategy, says the confirmation that people with an undetectable viral load can’t pass on HIV made the job of counselling couples a whole lot easier.
“It’s much easier to talk to these couples about the risks and to reassure them that they can have a healthy relationship and a relaxed sex life without worrying about the fact that one is positive, and one is negative”, she says.
And, with the discovery of U=U, there’s increasing evidence that there is not much to be gained in recommending expensive procedures like sperm washing or IUI for couples in which the HIV-positive partner is virally suppressed, 2018 Southern African HIV Clinicians Society guidelines argue.
But Davies says that it’s important to make sure that the HIV-positive partner keeps taking their antiretroviral treatment every day and goes for viral load testing every six months, as per the society’s guidelines.
While U=U has given some mixed-status couples the green light, positive partners who are not virally suppressed aren’t so lucky, Mandisa says.
For them, guidelines recommend that the HIV-negative partner consider taking the HIV prevention pill. When taken daily, the tablet — also known as pre-exposure prophylaxis (PrEP) — can reduce the risk of contracting HIV by up to 96%, studies have shown.
But HIV-negative partners should start taking PrEP daily at least 20 days before they start trying for a baby, the Southern African HIV Clinicians Society says. And if they stop trying to conceive and choose to go back to using condoms to prevent HIV transmission, HIV-negative partners should continue to take PrEP for the first month.
Because PrEP uses two of the three ARVs used to treat HIV to prevent infection, it is important for the HIV-negative partners on PrEP and who are trying for a baby to test for HIV every three months, the doctors’ group explains. This means that should anyone contract the virus, they can be switched to a three-drug treatment plan as soon as possible.
WHRI offers PrEP for mixed HIV status couples who want it at their clinic and at the nine other public health facilities in Johannesburg at which they offer safer conception counselling.
South Africa’s national HIV plan recognises that people in mixed-status relationships are at a particularly high risk of contracting the virus — the plan recommends that the country should pilot programmes to expand access to the HIV prevention pill among couples like this.
Prepping for the future: Who should be getting the HIV prevention pill
Today, Siya and Mandisa run a support group for mixed-status couples like themselves. Mandisa says very few couples have access to the HIV prevention pill when trying to fall pregnant.
But the national health department offers PrEP at 94 facilities nationwide for people at high-risk of HIV infection, says health department spokesperson Popo Maja, and this includes people who may be in mixed-status relationships.
The country has started about 24 000 people on the HIV prevention pill since 2016.
Davies is hopeful that new policies will increase access to the drug. However, she is worried that such policies will not translate into implementation.
“Staff haven’t been trained in how to provide PrEP and the staff are already so overwhelmed with identifying people who need treatment and managing those people,” Davies explains.
Meanwhile, she says, the science and power behind U=U still haven’t filtered down to many people living with HIV or their partners.
She says: “I think one of the challenges for the medical field is just making the language simple enough and accessible enough for people to understand.”
Back at the Dukashe’s home, the last words of Let it go fade into the background. Imange and Imyoli giggle, impressed with themselves.
Mandisa remembers the exuberance she felt when she held her last born daughter in her arms for the first time.
“The reason we named her Imyoli,” she says, “is because the name means ‘something which is beautiful’. It’s a special kind of achievement. It means everything is well.”