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> Can you hear me? HIV community tells industry the struggle is not over
Can you hear me? HIV community tells industry the struggle is not over
How community activism translates into innovative medicines
4 minutes

Decades of pharmaceutical innovation and an array of treatment and prevention options mean that many people living with HIV can now expect to live long and full lives.

Gone are the days when people diagnosed with HIV had to take so many pills that they needed to set multiple alarm clocks. A daily pill is now most common, but even that paradigm is changing as the industry investigates longer-acting medicines that don’t have to be taken every day.

Some of this progress has been reached through direct engagement and collaboration with the HIV community — people who live with the disease and those who treat and support them.

“No one wants to be talked at — we want to be talked with,” says Warren O’Meara-Dates, a US-based HIV community leader and founder of the 6:52 Project. “We want to be partners in this, because we’re the ones most impacted by the medicines that are provided for our longevity and opportunity for life.”

Dr Kimberly Smith, head of R&D at ViiV Healthcare, speaks with community leader, Charles Stephens, Executive Director, Counter Narrative during ViiV Healthcare’s 2022 annual US Community Summit.

This patient-centred approach is taken by GSK, through ViiV Healthcare, a specialist HIV company of which it owns the majority share. As a pharmaceutical company solely dedicated to HIV, ViiV bases much of its research and development (R&D) strategy on patient perspectives generated by advisory boards, community events and insights from clinical trials.

“Our mission is that we leave no one with HIV behind. And to do that, we must listen to the voices of people who are living with HIV,” says Dr Kimberly Smith, head of R&D at ViiV Healthcare. “A powerful example of this is our Positive Perspectives 2 study, one of the largest HIV patient-reported outcomes studies to date, which included nearly 2,400 people from 25 countries.”

Turning talk into treatment

The HIV community has advocated for action from the pharmaceutical industry since the early days of the epidemic. With grassroots groups such as ACT UP leading the way, HIV activists and advocates have had great success working towards the shared goals of better medicines and access to testing and treatment.

“Historically, the HIV community has had a huge impact on how drugs get developed and the acceleration of drug approvals,” says Smith. “This is an activist community. They deserve our attention, and we absolutely need to hear what they have to say.”

O’Meara-Dates has been a key part of the shift towards meaningful conversations as an activist and HIV community advisor to ViiV, as well as a number of public health bodies.

“For 30 years, without the inclusion of community at this level, the wheel just kept turning,” he says. “We weren't getting to the place where we needed to, in part because some communities were left out of initial conversations about what innovations we wanted and needed.”

Warren O’Meara-Dates, US-based HIV community leader; founder, 6:52 Project.

One breakthrough came in response to the community’s calls to lift the burden of daily treatment. Hearing these concerns, ViiV became the first company to develop modern two-drug regimens that can reduce the number of medicines taken over a lifetime. Further community insight has helped progress research that is leading to new options for treatment and prevention.

Research that reflects diversity

This is progress, but there is still room for improvement in clinical trial diversity to ensure individuals from the communities and countries where HIV is growing and more prevalent are included. For example, women account for 52 per cent of the global HIV population, but only 19 per cent of those included in HIV treatment and prevention studies.

This has long been a concern for the HIV community. “Human beings are diverse — no single regimen will have the same outcome from person to person,” says O’Meara-Dates. “Including the communities most affected by the development of treatments is an integral part of HIV eradication and prevention.”

In response to calls for representation, the US Food and Drug Administration is requiring pharmaceutical companies to improve diversity in biomedical research. Independently, many pharmaceutical developers, including ViiV, are setting targets for representative demographics in clinical trials.

For GSK and ViiV, their forward progress will leverage insights from a 17-year retrospective study of their US clinical trials, which was recently published in Clinical Trials: Journal of the Society of Clinical Trials.

The road ahead

Empowering the HIV community with more options for treatment and prevention is essential to tackling healthcare inequity. To this end, ViiV’s researchers are now investigating the possibility of ‘ultra-long-acting’ medicines with the hope that they could be taken every three months or longer, as well as self-administered medicines that could be taken at home. Many people living with HIV say this would reduce the emotional toll and stigma of a lifetime of treatment.

Silvia Petretti, UK-based HIV community leader; CEO, Positively UK.

“ViiV is giving options to folks like me who have had to take several medications every day over many years,” says O’Meara-Dates. “Having more choices to fit my needs is one thing that helps reduce the feeling of stigma associated with HIV treatment.”

Steps like these, says Smith, show how pharmaceutical companies can be more “open and responsive” to the people they seek to help. Finding a cure for HIV is the ultimate goal – but in the meantime, collaboration between the HIV community and pharmaceutical companies can help make HIV a smaller part of people’s lives.

“We are making strides, particularly with ViiV,” O’Meara-Dates says. “Many of us have spoken up to say, ‘nothing for us without us’, and pharma is listening. Nothing can truly be helpful if our voices are not part of developing new medicines.”

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