Opinion: The HIV response must put people first

This World AIDS Day is the moment to consider a reset in the HIV response.

HIV and AIDS has always been a very human story. The response to this pandemic has consistently been led by those most affected — initially the gay male community in high-income countries. The baton was then taken up by activists across the world including in low- and middle-income countries, as the fight to secure life-saving antiretroviral drugs in Africa and beyond became central to an effective human rights driven response. It is remarkable that we are now seeing the involvement of a new generation of HIV activists including adolescents, who are the first generation of young adults to have been born with the virus and raised on HIV drugs.

The political activism around the HIV response marked a line in the sand for global health more broadly — it came with a demand that communities be up front and centre in a health crisis response. Four decades on, communities living with HIV have political power. In many high-income countries, they are and should be equal partners on government committees, funding bodies, and research leadership teams.

Yet 40 years on, the reality is also this: HIV is a pandemic of the poor, as Peter Sands, the head of the Global Fund to Fight AIDS, Tuberculosis and Malaria, puts it in the World AIDS Day special episode of HIV unmuted – the IAS podcast. It disproportionately affects the vulnerable and the marginalized, the vast majority of whom live in LMICs. Last year, despite the existence of antiretroviral drugs that can prevent HIV acquisition and treat it as a chronic disease, 1.5 million people acquired HIV and 650,000 people died from AIDS-related illnesses.

HIV thrives on inequality. The latest UNAIDS report is an alarming confirmation of that fact. We ought not to forget either that inequality continues to drive other infectious diseases, such as TB, polio, and malaria, as well as noncommunicable diseases. The COVID-19 pandemic doubled down on that reality.

There are nearly 29 million people living with HIV on antiviral treatment today — an extraordinary achievement over the past two decades, and surely one of the greatest scientific and logistical achievements of the past century. Yet still, almost 10 million people are not on treatment. Still, people die of an infection that is completely treatable.

Entrenched inequality in the HIV response exacerbates the situation despite the best-intentioned efforts and work of activists around the world. It’s the elephant in the room and we need to talk about it.

Building care strategies around the individual

We must change our approach. For example, rather than thinking of “hard-to-reach populations,” we should think of “hard-to-reach health services.” Let us not put the responsibility of access to care, knowledge or resources on people and, instead, let us be sure that all of our strategies build around the individual, especially the most vulnerable.

This is why we call on all individuals and organizations in the HIV response to ask a simple question: Do our policies and ways of working place the individual at the centre of our thinking? In other words, do we put people first?

Money and programs must flow according to people’s needs, not funders’ priorities. Long gone are the times when a young mother living with HIV in Kenya should be obliged to make a long trip to receive her antivirals, and then have a cervical cancer test or take her child for a checkup in a different place. It should all be happening under the same roof, close to where she lives.

If we are also serious about reducing the stigma that so many women in LMICs face in revealing their HIV status publicly, then we need to make it easy for all people to self-test.

Putting people first across all aspects of the HIV response is a moral imperative and the only viable route to progress. It means arming the millions of women facing sexual partner violence and potential HIV acquisition with preventative treatment. It means keeping girls in school to complete their education and ending the poverty spiral. It means guaranteeing the human rights of people who have same-sex relationships so that they are not driven underground and out of the reach of health care providers.

Whether in the design of clinical trials, the formulation of policies or any other aspect of our efforts: people living with and affected by HIV must not be just “beneficiaries,” but the key players driving our work.

We won’t overcome HIV unless we overcome inequality in the HIV response, and we won’t overcome inequality in the HIV response unless we put people first. The people who dedicate themselves to improving the lives of people living with HIV — policymakers, scientists, civil society, doctors, nurses, counselors, and lawyers — have known this to be true since the early days of the pandemic. Now, this World AIDS Day could be the moment to consider this reset.