How much risk is too much?
cons of the new drug and how much choice they’ll give women in accessing it.
Seventy-one nations have already included dolutegravir as part of standard HIV treatment, according to data presented by the WHO’s Meg Doherty this week at the conference in Amsterdam. But on the heels of Zash’s discovery, almost one in five of these countries have now either banned dolutegravir completely for women of reproductive age or made access conditional to long-acting contraception use.
Less than a handful are even willing to discuss options with women according to their guidelines, leading many to wonder whether women living with HIV are being given any real choice at all about ARVs or birth control.
In a recent poll, the WHO asked HIV-positive women how they would react if they were given an ultimatum: No contraception, no dolutegravir.
Almost 60% of women said they’d want their healthcare worker to give them information on the risks and let them decide whether they’d take the drug with or without birth control, Doherty says.
The WHO softened its previous messages about dolutegravir in new HIV guidelines released this week. The document still bears a warning about the ARV and says women should be counselled about its risks, but the body hasn’t prohibited women from taking it. But at the guidelines’ launch, more than a dozen activists including women living with HIV marched through the aisles of the air-conditioned hall at the RAI convention centre in southern Amsterdam.
“Women demand DTG now,” protesters can be heard chanting on cell phone footage, using the common abbreviation for dolutegravir, “DTG”.
Russell says the WHO is not doing enough to tell countries such as Malawi, Uganda and Tanzania that have blanket bans on dolutegravir for women of reproductive age that they are going against WHO guidance.
“Many high burden countries have already decided that women under 50 should not get dolutegravir. That doesn’t add up. Dolutegravir is clearly a superior drug. Women need access to information and they can make the decision about whether it makes sense for them,” Russell explains.
Countries are, she says, partly weighing up the benefits of giving the drug to pregnant women, including cheaper and gentler treatment, with the possible risks to foetuses.
That can go two ways: Blanket bans — or empowering health workers to talk to women.
Russell explains: “Perhaps, the doctor is very worried — and doctors often get very worried about foetuses. Then a woman says, I’m not at risk of getting pregnant so thank you very much for your concern, I still need dolutegravir.”
But she says fear isn’t the only motivation: “It’s a lack of trust. Ultimately, the decision will be in the hands of a woman — she will walk out of the clinic and take the drug and you have to trust she is calculating the risks in a way that makes sense for her. You might not understand it. That’s what the pushback is about — an unwillingness to trust women.”
In Amsterdam, Zash has just finished her second panel of the day. The queue of people waiting to talk to her stretches five-deep at some points. Half an hour later, she finally breaks free and walks down the aisle of the 300-seater auditorium.
A colleague leans over and jokes, “Becca, this is all your fault.”
“We presented data on pregnancy at the last Aids conference too — back then it seemed like no one cared,” Zash says.
Since the day on the train, she says her thinking has gone from initial shock and panic, to focusing on a single thread: Choice
“At first, I was thinking about this as someone who has been pregnant in the not-so-distant past: How I would have felt knowing this and the decisions I would have probably made and how I thought everybody should decide.
“Then I started thinking much more about what it would be like to not be me. There are so many other things involved in [women’s choices] than just the pregnancy part when deciding on HIV treatment.”