COVID-19: The HIV research advocacy movement offers lessons

What we have learned from HIV can guide responses to COVID-19 that are innovative, effective and inclusive, and can help end the pandemic faster

In biomedical research, there is a “before HIV” era, and the world we live in now. Before HIV, most responses to public health crises were dictated top-down by government authorities and medical officials. Research was designed and conducted with little or no community input. Innovation was shunned, collaboration between research institutions avoided, and progress was slow.

While many of those challenges remain, years of work by dedicated and informed HIV advocates and researchers has accelerated both progress and collaboration in the fight against infectious diseases. The smarter, more responsive research approaches produced by these partnerships are now also advancing the fight against COVID-19. As responses to this new pandemic accelerate, it’s important to take stock of how the lessons of HIV can make the COVID-19 response faster, more inclusive, and more effective.

On a concrete level, HIV research has generated more scientific knowledge about immune function and responses than ever existed, along with a range of products and platforms that are speeding COVID-19 research today. Studies on HIV antiviral therapies are advancing the development of possible COVID-19 treatments, while HIV vaccine platforms are being used to accelerate experimental COVID-19 vaccines into clinical trials.

Even more fundamentally, many basic approaches to biomedical research have been transformed by HIV advocates who studied the research process, challenged assumptions, and brought bold new ideas to the table. Because of the HIV advocacy movement, communities have assumed a concrete role in research design and implementation. Collaboration between research institutions, across public-private lines and between researchers and communities is more encouraged and supported. And innovation to safely speed both research studies and access to the products they help to develop is more prioritized.

Thanks in large part to the research and funding collaborations and trial design innovations set out by the HIV community, the potential timeline for developing a COVID-19 vaccine has been slashed from the industry average of 5-7 years to just 18 months. HIV advocates have also played a key role in encouraging product developers and funders to invest in manufacturing capacity long before tests of vaccine or treatment candidates are complete – so that urgently needed products can be produced and delivered as soon as they’re proven safe and effective.

Rapid research is important, but brings a real risk that along with speed can come harm to the communities that make research possible. In the weeks and months ahead, clinical trials will examine potential COVID-19 treatments and vaccines. Epidemiologists will attempt to understand how our movements and interactions spread or slow the disease. In a field of research directly related to HIV, studies will try to determine whether antibodies produced in response to COVID-19 can help prevent infections. And researchers will grapple with the challenges of “pragmatic trials” such as the World Health Organization SOLIDARITY trial, which seeks to measure the relative effectiveness of four potential COVID-19 treatments rapidly and in real-world settings.

As all of these studies move forward, it’s critical to apply one of the greatest contributions of the HIV research advocacy movement: the Good Participatory Practice (GPP) Guidelines developed by AVAC and UNAIDS. Good participatory practice guidelines provide trial funders, sponsors and implementers with systematic guidance on how to work effectively with those for whom the stakes are highest in the design and conduct of biomedical research.

The World Health Organization has already built on the GPP model with Good Participatory Practice for Trials of Emerging Pathogens (GPP-EP), a roadmap for engaging community stakeholders and promoting ethical standards in research for new diseases, such as Ebola, Zika, and now, COVID-19. Used effectively, these guidelines can help ensure that COVID-19 research is conducted in collaboration with stakeholders from trial communities to global funders, trial participants are informed and protected, critical expectations about research processes and timelines are maintained, and research outcomes lead to the swift development and delivery of life-saving products to those in need.

Beyond the research arena, citizen advocates have a vital role to play in holding political leaders accountable, supporting adequate funding for the COVID-19 response, and countering stigma and misinformation. Already in this new pandemic, we have seen world leaders distort the severity of the COVID-19 pandemic, minimize the importance of behavioral prevention such as physical distancing, and underestimate the research timelines for developing treatments and a vaccine.

Informed advocates can be the best response to misinformation, whatever its source. Nearly forty years of battling HIV shows that advocates have the expertise to understand the science, the skills to communicate it effectively, and the networks to get the facts to those who need them most. As we continue to respond to HIV, this movement can also employ our decades of research advocacy know-how to help reduce the global toll of COVID-19 and bring this new pandemic to a close.