This piece originally ran on Devex.
By Jenny Lei Ravelo
Policy documents don’t usually trigger excitement. But at this week’s 12th International AIDS Society Conference on HIV Science, a rare thing happened when the World Health Organization presented its latest brief.
“People living with HIV who have an undetectable viral load, have zero risk of transmitting HIV to their sexual partners,” Lara Vojnov, technical officer at WHO’s department of global HIV, hepatitis and sexually transmitted infections programs, said before a packed room of delegates who erupted in applause.
For many people working on HIV this information is not new. A campaign that started in 2016, called “U=U,” which is short for “undetectable equals to untransmittable,” was essentially making the same argument and WHO has also included this information in its HIV treatment guidelines.
But the agency previously didn’t use the term “zero risk” and found the message wasn’t getting through to everyone, including policymakers and people living with HIV themselves, with some of them convinced there’s no such thing as zero risk.
“I think what came out in a lot of conversations that I’ve had with people living with HIV [and] with others is we didn’t realize that we needed to make this statement. We believed in it, we knew the evidence, we were behind U=U or behind any other campaign that said similarly. But we just didn’t understand, frankly, the impact that making this kind of a statement from ourselves will have,” Vojnov told Devex.
The next step is to disseminate the information to people living with HIV and empower “everyone across the response to be able to speak to the general public and say, this is what this means,” she said. Many hope that with this information, people living with HIV can find relief and freedom to do what they want — be it having children or being intimate.
For Micheal Ighodaro, the director of global policy advocacy of the Prevention Access Campaign, it certainly is liberating.
“I’m getting married this year to my partner. Just knowing that right now my partner will have zero risk of transmission, we can have sex when we want to have sex, and he has absolutely zero risk of getting infected,” Ighodaro told Devex.
Long overdue
For those who knew that someone with an undetectable viral load cannot pass on the virus to their sexual partners this declaration is welcome.
Melania Mugamu, who is living with an undetectable viral load and works as a peer treatment facilitator for the Queensland Positive People to support other people living with HIV in Australia, said she’s seen it among serodiscordant couples — couples with one partner living with HIV — that have been living together for years and have no history of HIV transmission.
“Even before U=U was formally announced, I was beginning to see it,” she said. But others had doubts, which she said was understandable given the long history of HIV and how, 40 years later, it still doesn’t have a cure.
“People know that it’s not a curable disease. So people are frightened of transmitting it to other people, and therefore they will have to think and they will want assurance,” she said.
Nina Hasen, Population Services International’s vice president for HIV and TB programs, said she’s known for years that people with low levels of the virus in their blood can no longer sexually transmit the virus, thanks to early research.
One of them is the HIV Prevention Trials Network study 052, which enrolled serodiscordant couples across nine countries to determine if antiretroviral therapy can help prevent sexual transmission of the virus. Initial data from the study published in 2011 showed a 96% reduction of HIV transmission in couples where the partner living with HIV reached viral suppression.
The study and subsequent others eventually led WHO to change its treatment policy to cover everyone with HIV, meaning they started treatment as soon as they tested positive for HIV.
But these findings didn’t reach people living with HIV for two reasons: There were limited viral load tests in countries, and policymakers and medical professionals such as doctors and nurses who were supposed to be a source of information didn’t believe it, according to Hasen.
When WHO did come out with the information in 2021, it was “buried” in its guidelines and wasn’t clearly stated, she added.
Vojnov said when they came out with their 2021 guidelines, they also slightly revised their treatment monitoring algorithm, but didn’t realize that it could lead to misinterpretations. In one change, they defined undetectable viral loads to mean having 50 copies of HIV per milliliter of blood.
“That drove countries to think they could only utilize plasma testing for viral load. And it really restricted access to viral load testing, particularly in developing settings, where they can’t get a plasma sample to the lab within 24 hours,” she said.
“It just became more and more evident in a lot of those conversations with stakeholders across the board the impact and the need for releasing not just the evidence, but also taking the evidence and turning it into public health messaging that can be really clearly understood by everyone in the HIV response,” she added.
Scientists also had a hand in the confusion. Hasen said the HIV response is “very medicalized,” and most often “they just assume that everybody knows these things.” They also don’t spend enough time listening to people living with HIV about their experience and what’s important to them, and instead focus on handing out treatments with the main benefitting message being that it won’t make them sick.
“But when we actually start putting people living with HIV at the center, and asking them … what’s the biggest problem you face living with HIV? People don’t say that I’m gonna die. People say the biggest problem for me, of living with HIV, it’s [being] socially dead. Nobody will marry me. Nobody will have sex with me. Maybe people won’t hire me. So what do I care about your treatment?” Hasen said.
“If we’ve been listening to people living with HIV, we would have been saying this much sooner. But because we weren’t listening, we didn’t realize how important it was,” she added.
A turning point
In 2015, one man felt the need to take action.
Bruce Richman, who had been diagnosed with HIV for more than a decade at that time, founded the Prevention Access Campaign with the main purpose of disseminating the information. He started it a few years after learning that his viral load has reached undetectable levels, and how that meant he can no longer pass the virus.
“It totally changed my possibilities of love, of intimacy, of sex, if I could have children that I never thought I could have. It changed everything for me,” he told Devex.
But he noticed this information isn’t really being communicated in public health, leaving a wide knowledge gap between the science and the people living with HIV.
So in 2016, he and his team launched the U=U campaign, after consulting with scientists to confirm the science. They then reached out to people and organizations to endorse it. The campaign started to gain traction, receiving support from over 1,000 organizations from 105 countries, and endorsements from organizations such as WHO, U.S. President’s Emergency Plan for AIDS Relief, U.S. Centers for Disease Control and Prevention and UNAIDS.
But they weren’t winning everyone over.
“In various countries, we continually hear this pushback and people would be uncomfortable with being definitive and saying undetectable equals untransmittable. They like to say caveats and say, ‘But use a condom just in case,’” he said.
“But now that the WHO is saying zero, there’s no ambiguity with zero. Zero is zero in every language and every culture,” he added.
It took about a year and half to develop the policy to ensure wide consultation and input from different groups of people, including people living with HIV, said Richman, who was teary eyed when the announcement was finally made this week, saying it’s “such a relief.”
“I just realize how many more millions of people are going to be able to experience this joy and freedom of knowing that [they] can’t pass on HIV to anyone,” Richman said, but only if they know about it, which is his cue to get back to work and make sure people with HIV and others such as health care professionals, policymakers, and donor aid agencies understand it and start to see the opportunities to scale up viral load testing.
Getting the word out
The job now is to clearly communicate the message to policymakers, health workers and people living with HIV.
Apart from translating the guidelines to other U.N. languages, WHO is also planning with several partners a series of webinars over the next three months that focuses the messaging on people living with HIV and health care providers, as well as on health ministries and its own country offices.
Meanwhile, PAC has founded the viral load testing access coalition that mobilizes civil society organizations on equitable access to viral load tests and results.
Ighodaro believes this new policy brief can be useful as evidence to push governments such as Uganda to overturn its anti-gay law, by saying that the law is making it difficult for LGBTQ+ people in the country to access treatment, and therefore makes it impossible for them to achieve zero risk of transmission.
Any message however needs to remind people of their responsibilities to remain undetectable, Mugamu said.
“If I stopped taking my medication tomorrow, I’ll be detectable. So we need to be able to send a message that says it’s still our responsibility to remain undetectable,” she said. “Being undetectable once is not enough. You want to be undetectable all the time.”
