Opinion: Lessons from the HIV epidemic can teach us resilience in the face of COVID-19

In many ways, COVID-19 is the newest iteration of a decades-long struggle for equality and justice: too often, the most vulnerable are stigmatized, denied access to care, and left out of key decisions that directly impact their health.

Today, marginalized groups are disproportionately affected by both the health risks as well as the economic and social fallout of COVID-19. LGBTIQ+ populations have been subject to further blame and abuse due to the pandemic and are being left out of COVID-19 response and recovery initiatives. People who are incarcerated report being denied care as the coronavirus tears through prisons around the world. Lockdowns and social distancing requirements have left many sex workers without income, and those that continue to work face heightened health risks.

The parallels to the HIV/AIDS epidemic are clear, at the height of which those most affected were many of the same marginalized groups that are most vulnerable to COVID-19 now. Widespread stigma and discrimination prevented many from seeking care, and many health workers refused to treat these communities for fear of contracting the virus. Yet, affected communities were often excluded from discussions about HIV research, funding, and policy agendas. That is, until AIDS activists took matters into their own hands.

The history of AIDS activism led for and by people living with HIV illustrates the importance of empowering affected communities with the science and resources they need to shape the care and support they receive. By educating, organizing, and mobilizing themselves, AIDS activists were able to change the course of the epidemic to the point where HIV is no longer a death sentence.

To recover from the COVID-19 crisis, finish the job on HIV, and build resilient systems that can withstand future threats, we must apply these lessons to ensure vulnerable populations are not only not left behind, but at the center of response efforts.

In the 1980s and 1990s, people living with HIV and those most at risk of infection were instrumental in getting HIV on policy agendas. Led by groups like ACT UP, TAG, and the Treatment Action Campaign, among others, activists rallied around the principle of “nothing about us without us.” That meant learning about the latest science and becoming involved in all aspects of the epidemic — from R&D to drug pricing and access to essential services. By combining acts of civil disobedience with concrete policy asks grounded in evidence, science, and human rights, AIDS activists sped the development of effective treatments and revolutionized the way new drugs are identified and tested.

Once treatments were developed, activists aggressively pushed for access to these treatments in low- and middle-income countries. Some officials made racist assertions that people from Africa were incapable of understanding how to use complex treatments like antiretroviral therapies properly. Activists around the world mobilized to fight barriers to access, including the high cost of life-saving medicines and the biases and prejudices that meant the difference between life and death. Working with pharmaceutical companies like Cipla, generic versions of antiretrovirals were made available at dramatically lower prices and millions of lives were saved.

There’s still more work to be done to ensure vulnerable populations have access to the HIV services and care they need. In 2019, 62% of new HIV infections occurred among key populations and their partners, including men who have sex with men, sex workers, transgender people, people who inject drugs and prisoners.

Marginalized populations continue to face barriers to access to HIV services due to fear of judgment, violence, and arrest. At least 92 countries criminalize HIV transmission, exposure, or nondisclosure, exacerbating stigma and discrimination. COVID-19 is further disrupting access to HIV services, threatening to roll back decades of progress. To address persistent inequalities in access to care, we need to renew efforts to elevate the voices of affected populations and prioritize their needs.

Just as AIDS activists fought to make the voices of the most marginalized heard, today we are seeing community-led COVID response strategies make an impact in expanding access to vital health services. In Thailand, a sex worker advocacy group has adapted its model as its members face new challenges in the face of COVID-19, including by taking to the streets to raise donations and deliver food to sex workers in their network.

In Senegal, community organizations led by people living with HIV are organizing to deliver masks, soap, and hand sanitizer to vulnerable populations, in addition to training community leaders to educate people on how to protect themselves. And in New York, TAG and PrEP4All are pushing for more rapid development of COVID-19 drugs and vaccines and a more effective local response to the pandemic.

But sustained energy and commitment will be needed to protect those most vulnerable. We are already seeing some troubling signs of history being repeated as countries seek to gain exclusive access to treatments and future vaccines. AIDS has taught us that the only way to end the pandemic is through a truly global effort that prioritizes those without access to care and rights.

COVID-19 demands that we learn from history. We cannot afford to fall back into old ways of doing things. Instead, we need to develop new approaches driven by science, equality, and justice that elevate those most marginalized and ensure access to prevention and care for all. Only then can we end AIDS — and COVID-19 — for good.

Update Aug. 19, 2020: This op-ed was updated to reflect that 92 countries criminalize HIV transmission, exposure, or nondisclosure, according to UNAIDS.