LEN won’t sell itself: 6 lessons from HIV prevention pills

South Africa now has one of the most effective HIV prevention medicines, in the form of a twice-yearly injection, ever developed. But there’s a catch: people have to want it — and know where to get it.

Lenacapavir, or LEN, protects HIV-negative people against getting the virus for six months at a time and is almost 100% effective. South Africa started rolling it out at 360 government clinics in June, but next year, when generics become available the country will start rolling the medicine much more widely.

Analysis of Wits University’s Health Economics and Epidemiology Office, HE2RO, shows that if between onel and 2-million people take LEN each year between now and 2043, South Africa will be able to prevent enough new HIV infections to end Aids as a public health threat within the next 17 years.

We’ll have a lot of catching up to do from 2027 onwards, because we’re still far from reaching those numbers. By October 5, just over 71,000 people in the country had taken LEN, health department figures show.

But the experience of daily, equally effective HIV prevention pills, which the government started to roll out widely in 2020, should serve as a warning: an excellent medicine, even when it is free, does not necessarily sell itself.

By June, only 2.3-million people had ever taken the pill, according to health department data, despite almost all government clinics stocking it. According to the Thembisa model South Africa has around 40-million HIV-negative people aged 15 and older who could benefit from the pill, depending on their risk of getting HIV.

One important reason is remarkably simple: many people don’t know about the pills.

A 2022 national survey found that only a third of sexually active South Africans over 15 had ever heard of HIV prevention pills, also known as oral PrEP.

That matters for LEN.

If South Africa wants large numbers of people who could benefit from LEN to use it, we need to deliberately create demand for the injection. That means making sure people know it exists, understand what it does and know where they can get it.

But how?

Our research on HIV prevention pills offers some answers.

In 2022, the Gates Foundation funded several South African organisations to test different ways of providing HIV prevention pills to young people. The projects also evaluated ways of telling people about the medication, including community radio adverts, flyers, posters, social media, community outreach and peer education.

HE2RO evaluated the costs of these projects and interviewed 1,038 young people starting an HIV prevention medicine for the first time. We asked how they had first heard about it and what persuaded them to start using it.

The results offer six important lessons for South Africa’s LEN roll-out.

1. Deliberately telling people how HIV prevention works

Almost half — 46% — of the people we interviewed said they first heard about HIV prevention medication through deliberate efforts — such as one-on-one or small-group conversations with a peer navigator or healthcare provider and social media posts — by the organisations running the projects, the government or healthcare providers.

Another 35% heard about it through friends, family or other people in their social circles.

This tells us something important: awareness doesn’t simply happen because a medicine exists.

LEN lesson: We cannot leave demand for LEN to chance. The fact that the injection is highly effective, only needs to be taken twice a year and is free at government clinics will not automatically mean enough people will come forward to get it. Creating demand has to be a deliberate part of the roll-out.

2. The messenger matters

The projects that used people to speak directly to potential users did particularly well.

These approaches included peer educators handing out flyers, explaining HIV prevention medication one-on-one, telling people where they could get it and, in some cases, accompanying them to services.

In the project that used community outreach and relied only on area-based peer navigators, 46%–50% of people started HIV prevention medication immediately after hearing about it.

In projects that did not use this approach, only 21%–34% did so.

People were more likely to start when they heard about HIV prevention medication from someone they could relate to.

That makes intuitive sense. A young woman may have different questions about an HIV prevention injection from a sex worker, a transgender person or a pregnant woman. Someone who has used LEN themselves may also be able to answer practical questions in a way that a poster cannot.

LEN lesson: Who delivers the message matters. People who understand the communities they are speaking to — and ideally have experience of using HIV prevention themselves — can help build trust and answer people’s real questions about the injection.

3. Don’t make people wait once they’re interested

There was another important feature of the community outreach projects: people who became interested in HIV prevention medication could act on that interest quickly.

Peer navigators didn’t simply tell people that the medication existed. They explained where they could get it and sometimes accompanied them to services.

This helped turn awareness into actual uptake.

There is little value in persuading someone that LEN is right for them if they then have to spend days or weeks trying to work out which clinic stocks it, make repeated trips to a facility or arrive only to discover that they cannot get the injection.

LEN lesson: The time between someone hearing about LEN and being able to get it should be as short as possible. Outreach therefore needs to be linked to clinics that are ready to provide the injection.

4. Don’t rely on mass media alone

Mass media may reach large audiences, but our findings suggest that reaching millions of people is not the same as persuading someone to use HIV prevention medication.

Only 5% of the young people in our study said they had first heard about HIV prevention medication through high-profile mass media such as television, radio or billboards.

By contrast, 84% first heard about it through channels such as friends and family, healthcare workers or targeted social media.

This doesn’t mean radio, television and billboards have no role. They can help make LEN widely known and normalise HIV prevention. But our findings suggest they should not be the only strategy.

LEN lesson: LEN campaigns should target the places where potential users already spend time — clinics, pharmacies, youth organisations, community spaces and the online platforms they use — rather than relying mainly on broad and expensive advertising campaigns.

5. Budget for demand creation

There is another lesson policymakers cannot afford to ignore: telling people about a medicine and helping them access it costs money.

In the projects we evaluated, activities aimed at creating demand accounted for between 14% and 40% of the total cost per HIV prevention visit, depending on the approach used and the number of people reached.

Health budgets tend to focus on obvious costs: buying medicines, training nurses and providing services at clinics.

But if nobody knows that a medicine exists — or people don’t understand why they might want it — the money spent buying it will not achieve its full value.

Peer educators need to be paid. Outreach teams need transport. Community events cost money. Social media campaigns need people to create and distribute content.

These are not optional extras. They are part of getting a medicine from a clinic storeroom into the hands — or, in LEN’s case, under the skin — of someone who can benefit from it.

LEN lesson: For a successful roll-out, the government needs to budget for creating demand, not just buying LEN and training healthcare workers to provide it. Otherwise clinics could have injections available but too few people are coming forward to use them.

6. Measure what actually works

Demand-creation campaigns also need to be measured properly.

Counting how many people saw a Facebook post, received a flyer or attended a community event tells us very little about whether the campaign worked.

The more useful question is: how many of those people went on to get HIV prevention medication?

And there is another question: are campaigns reaching the people most likely to get HIV and therefore most likely to benefit from LEN?

Without this information, money can continue flowing into campaigns that look impressive but don’t result in people actually using the service.

LEN lesson: From the beginning, the health department should track which approaches lead people to clinics and ultimately to getting LEN. This will allow money to be shifted towards approaches that work and away from those that don’t.

So what should government do now?

The national health department already plans to promote LEN through activities including clinic campaigns, community discussions, media coverage, radio, peer educators and social media.

Our research suggests three things will be particularly important.

First, campaigns need to be targeted. Broad awareness is useful, but the greatest benefit will come from reaching people who are most likely to get HIV and helping them decide whether LEN is right for them. Community conversations and peer-led programmes, focusing on priority groups, will be particularly important.

Second, government will need to find the money to sustain this work.

When HIV prevention pills were first rolled out, international donors and donor-funded organisations covered much of the cost of peer networks and community outreach. LEN is arriving at a very different moment, when South Africa is facing major cuts in international health funding.

The more personal approaches that worked well in the projects we studied — peer educators, community outreach and one-on-one conversations — require people, time and money. They may cost more than putting up a billboard or running an advert. But if they result in more people who need HIV prevention medication actually using it, that additional spending may be worthwhile.

Third, campaigns need to match the supply of LEN.

South Africa is starting its roll-out with a limited number of injections paid for by the country’s Global Fund grant. There is little point in running a big campaign encouraging people in an area to ask for LEN if nearby clinics don’t have enough stock.

Worse, doing so could damage trust.

Someone who has been persuaded to try LEN, travels to a clinic and is then told there are no injections may be less willing to return later.

Demand creation therefore needs to be local and closely linked to what clinics can actually provide. When campaigns generate interest, the health system needs to be ready to turn that interest into an injection.

South Africa’s experience with HIV prevention pills has already taught us that making an effective medicine free and widely available is not enough.

LEN gives the country an extraordinary new HIV prevention choice. But its impact will ultimately depend on whether the people who could benefit from it know about it, trust it and can get it when they want it.

That requires more than medicine.

It requires people who can explain LEN in ways that make sense, clinics ready to provide it and enough money to connect the two.

Refiloe Motaung is a researcher specialising in health economics. She holds a master of science in medicine from the University of the Witwatersrand and a BCom hons in econometrics. Her research work has focused on the economic evaluation of differentiated HIV prevention and treatment services in sub-Saharan Africa.

Cheryl Hendrickson, Jacqui Miot, Lawrence Long and Sydney Rosen, investigators on this study, contributed to this piece. This work was supported by the Gates Foundation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the funder. Bhekisisa also receives funding from the Gates Foundation, but operates editorially independent from the Foundation.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter