Daily or weekly? Why I joined an HIV treatment trial — even without the new pill

When Ant Babajee returned to his HIV clinic, it wasn’t just for a check-up — it was to be part of something bigger. Though he wasn’t selected for the new once-weekly treatment in a clinical trial, he still said yes. For Ant, being in the control group is just as meaningful. It’s about showing up, being visible, and helping make HIV research more inclusive — for everyone.

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This week has been about time — and what each of us can do with it to make an impact. On Tuesday I was back at the world-leading Ian Charleson Day Centre at the Royal Free Hospital for my routine six‑monthly appointment with my HIV consultant.

But this wasn’t just any check‑up — it was also my week‑12 visit as part of the ISLEND‑2 study, a clinical trial investigating a once-weekly pill combining islatravir and lenacapavir (ISL/LEN) to treat HIV.

You might recognise the name lenacapavir: when used as a long-acting injectable antiretroviral drug, it has been proved effective in trials as six-monthly PrEP, and that means it has the power to change the history of HIV.

From 365 pills a year to just 52?

The question at the heart of the ISLEND‑2 trial is powerful: could people living with HIV take just one pill a week, instead of one or more every day, and still maintain viral suppression? If the answer is yes, it could transform daily life for many of us.

After I agreed to join the trial a few months ago, I was randomised to stay on my current treatment, otherwise known as standard of care.

Randomisation is like a Sliding Doors moment: it could go one way or another.

I had switched to my current treatment in July 2024, having been on my previous treatment for around a decade.

This switch to a more modern treatment regime simplified my routine: instead of having to remember to take two different pills once a day, I now take just one daily tablet that combines two drugs.

It also reduced my risk of experiencing major cardiovascular events (MACE). In other words, it reduced my risk of having a heart attack or a stroke in my later years. The switch to a newer treatment also reduced the small side effects I got from my previous meds.

Still smiling and rocking my Keith Haring sweatshirt after I was randomised into the control group

Sure, I was curious to try the weekly pill. But what many people don’t realise is that randomised controlled trials (RCTs) like this one need participants who stay on their standard-of-care treatment.

As we often discuss in meetings of the UK-CAB — the UK’s community network of HIV treatment advocates — and as explained by HIV i-Base, the control group is vital. Without it, there’s nothing to compare the new treatment to. It’s the control group that gives the study scientific rigour.

So even though I haven’t switched regimens, I know I am contributing day-by-day just as much to the future of HIV treatment as those on the new weekly pill. And that is a wonderful feeling.

Community at the heart of research

Beyond my small role in the ISLEND‑2 research, I have spent more than a decade as a volunteer working to make HIV research, support services and health promotion more inclusive and representative.

I am an active member of UK-CAB, where we bring the lived experience of people with HIV directly into the research conversation. I am also proud to be a community member of the British HIV Association (BHIVA) and National HIV Nurses Association (NHIVNA).

Three HIV activism trips to Brighton in 2024 and 2025

The UK-CAB recently became an ongoing project of Positively UK, a charity led by and for people living with HIV, where I am a trustee and peer mentor. There I and many other wonderful people — our staff and volunteers — support members of our community — our peers — through diagnosis, treatment decisions, stigma, and everything else life throws at us.

Thanks to my visibility as well as my privilege — I am open about my HIV status at work, and my manager accommodates my clinic visits — I was able to enrol in this trial without stress. I claimed the time as a reasonable adjustment, so it didn’t eat into my annual leave entitlement.

But many others don’t have that luxury. People who are more marginalised — whether because of race, sexual orientation or gender identity, immigration status, disability, or lack of workplace support — often face major barriers to getting involved in research.

Raising awareness of the right of people living with HIV to request reasonable adjustments in the workplace is one of the many things I have been campaigning on with colleagues at UNISON over the past few years.

UNISON is one of the UK’s largest trade unions with more than a million members working across public services, including in healthcare, local government and higher education, and I sit on their Greater London Region LGBT+ Committee.

It was a special moment to visit Parliament for a World AIDS Day reception to launch of our model policy to support workers living with HIV that the union had developed with National AIDS Trust. And it was wonderful and very unexpected to be recognised for my activism by the union with a Breaking Barriers award in LGBT+ History Month.

Over the past few years, so many of my UNISON comrades have helped me to understand the meaning of solidarity and active allyship — I feel so fortunate to have found them.

Advocacy and representation matters

Pharma companies must strive to make trials like ISLEND‑2 more representative by doing and encouraging others to do community outreach and by offering access payments for trial participants. All of us in the HIV community as well as our allies and friends have a role to play in advocating for that to happen.

It is not good enough to develop new treatments if they are only tested in narrow, privileged populations. If the people most affected by HIV and who face additional barriers are not included, the results may not adequately reflect their needs or realities, and rarer side effects might not be uncovered in the trial.

So let’s demystify the process. Let’s talk openly about what clinical trials involve. Let’s support and encourage those who might otherwise be left out. Because when more of us participate and get involved in advocacy, the outcomes are better for everyone.

As HIV activists and advocates, we have a mantra borrowed from our comrades in the disability rights movement: nothing about us without us.

Let’s think globally, but act locally. Let’s make sure nobody is left behind in the development of new medications. And then, crucially, we must ensure treatment is accessible to everyone who needs it.

Related stories:

• December 2024: World AIDS Day: Unionising against HIV Stigma for 2030
• November 2024: Positively UK: World AIDS Day — uniting against HIV stigma for 2030
• July 2024: Unionising against HIV Stigma: tackling HIV stigma in our workplaces
• June 2024: UNISON stands against HIV stigma
• February 2024: UNISON: Let’s get organised — Year of LGBT+ Workers
• December 2023: World AIDS Day 2023: HIV has changed — but our employers don’t know this
• July 2023: “As a gay man, it fills my heart with joy to bring visibility to a community that has previously had nothing” — MDX staff working closely with Barnet community to raise profile of LGBT+ residents
• June 2023: MDX wins university of the year accolade at Queer Student Awards
• May 2023: Ant Babajee is a Stonewall Change Maker of the Year
• March 2023: Stonewall Award Winners
• March 2023: Inspiring HIV activist named Change Maker of the Year
• February 2023: MDX recognised for LGBTQ+ work with Gold Award from Stonewall
• December 2022: MDX’s Ant proud to “rock the ribbon” as face of World AIDS Day 2022
• December 2022: My World AIDS Day 2022
• August 2022: Middlesex University at Pride 2022
• February 2022: LGBT+ History Month, National HIV Testing Week, Middlesex and me
• February 2021: It’s a Sin: it’s not my story, but at last my history is on screen
• January 2021: My 14th annHIVersary: a day for hope, not sadness
• December 2020: Nothing about us without us: why it’s vital we amplify the voices of people with HIV on World AIDS Day
• April 2020: COVID-19: physically distant but still connected to my LGBT+ community
• January 2020: The Undetectables: U=U, PrEP and a decade with HIV
• January 2019: Baring all about HIV and U=U
• March 2018: The Inheritance is this generation’s Angels in America
• January 2018: I have just found out I am HIV positive: what do I do now?
• December 2017: World AIDS Day: community, fear and hope
• July 2017: Why I walk with Pride

HIV facts:

• HIV [Human Immunodeficiency Virus] attacks the immune system and weakens the body’s ability to fight diseases.
• Antiretroviral medication — also called ARVs, combination therapy, or HIV treatment — lowers the amount of the virus in the blood to undetectable levels, which stops it from damaging the immune system, and means it cannot be passed on to other people.
• HIV treatment is now extremely effective and easier to take than ever before. Many people take just one or a few pills once a day.
• A person with HIV should live just as long as an HIV-negative person — especially if they are diagnosed early and begin treatment.
• There is still a great deal of stigma about HIV. Stigma is damaging as it prevents people from getting tested, from accessing treatment and from living a happy and healthy life.
• Aids [Acquired Immune Deficiency Syndrome] can develop when HIV damages the immune system to such an extent that it can no longer fight off a range of often rare infections it would normally be able to cope with. In the UK, the term ‘late-stage HIV’ is now generally used as it is much less stigmatising. HIV treatment stops the virus from damaging a person’s immune system.
• HIV cannot be passed on through casual or day-to-day contact. It cannot be transmitted through kissing, spitting, or sharing a cup, plate or toilet seat.