Like so many of her generation, Josephine Nabukenya wasn’t aware of her HIV status during her early childhood in Uganda. But when she was 8 years old, she came across a letter written by her mother that revealed the devastating news: Josephine and her mother and father were all living with HIV. Josephine was HIV-positive at birth.
Now a 27-year-old youth worker at the Makerere University Johns Hopkins University Research Collaboration in Kampala, Uganda, Josephine is one of the hundreds of thousands of children who belong to a generation born HIV-positive but who are alive today due to the power of antiretroviral medication — and political activism.
Two decades ago, however it looked like Josephine and her generation were doomed as the world watched a potential human tragedy engulfing sub-Saharan Africa: The lifesaving triple combination of antiretroviral drugs known as HAART, which was available to many people living with HIV in high-income countries since it became the standard of care in 1996, was not making its way to the continent.
Then, 20 years ago this month, vociferous political activism and lobbying led to a declaration by the United Nations General Special Assembly on HIV/AIDS that changed everything. It spawned the creation of the Global Fund to Fight AIDS, Tuberculosis and Malaria in 2002 and provided the impetus to set up the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003, driven by then-President George W. Bush and Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases.
HIV drugs began arriving in Africa.
PEPFAR has saved more than 18 million lives and prevented millions of HIV infections. It has played a pivotal role in helping establish control of HIV in more than 50 countries. The Global Fund has saved nearly 40 million lives. Today some 26 million people are on antiretroviral treatment.
Those efforts reflect the fight to end the Covid-19 pandemic by vaccinating people everywhere, regardless of where they live or were born.
June 5 marked the 40th anniversary of the first official notification in the U.S. of the disease that came to be known as acquired immune deficiency syndrome, or AIDS for short. This week, the United Nations holds another High-Level Meeting on AIDS.
The outcome of such a meeting is generally a political declaration. But the talk currently making the rounds is that a consensus may not be reached. Some of the language being contested includes including strong disagreement around negotiations linked to the proposal to waive the World Trade Organization’s agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS). The waiver would be a first step in making it easier for middle- and low-income countries to make or access Covid-19 vaccines. The irony has not been lost on AIDS activists.
It’s no less ironic that the current crop of Covid-19 vaccines would not have made their ways out of the lab had it not been for decades of research dedicated to the search for a vaccine against HIV.
The global response to HIV has served as a model for much of what is done today in public health. The conversations we are now having around vaccine equity, human rights, testing, tracing, evidence-based policy, and community-led accountability are all straight out of the HIV playbook.
HIV has taught us the value of knowing one’s epidemic (or pandemic) and then following the science to lead the way out of it.
We learned early on that the human immunodeficiency virus disproportionately affects vulnerable populations such as gay men, sex workers, drug users, transgender people, young women, and incarcerated people. Likewise, Covid-19 has hit vulnerable people particularly hard, such as older adults; people living with chronic diseases like diabetes, obesity, hypertension and cardiovascular disease; the working poor; migrants; and incarcerated people. In the U.S. and the United Kingdom, Black people and people from ethnic minority groups are disproportionately affected by HIV and also have higher death rates due to Covid-19 than the general population.
With HIV, researchers got to work on the science and then implemented it on the ground: Four decades of work led to a once-a-day antiretroviral pill, injectable antiretroviral drugs, a pill (PrEP) to prevent acquiring HIV, vaginal rings that release HIV-fighting drugs, and self-testing kits. These have transformed HIV from a death sentence into a chronically manageable disease.
It has done so precisely because many of these innovations tackled elements that have been at the heart of the pandemic: stigma, discrimination, and unequal power. A self-testing kit means anyone can find out their HIV status in private. A PrEP pill taken before and after sex is a self-initiated prevention method invisible to others that can, for example, protect a young woman from an HIV-positive man whose viral load is unknown and who refuses to wear a condom. Unprotected sex with someone who is living with HIV and is on treatment and virally suppressed poses no risk for onward HIV transmission.
Indeed, communities most affected by HIV have been an integral partner in the global response from the very outset. In the early days, infection with the virus usually meant death from AIDS, which was devastating for families and communities. Gay men in the U.S and other high-income countries fought against discrimination, the right to dignified care, then access to drugs at home. They pushed the scientific community to allow for parallel drug trials that allowed them to receive antiretroviral drugs that were undergoing testing, a precursor to the compassionate use of drugs being tested in trials today. They marched the streets with scientists to demand access to drug in the developing world.
So too did people living with HIV in South Africa, Zimbabwe, Kenya, Uganda, and other countries. As a result of their tireless efforts, matched in step with scientific progress, HIV today for many is a manageable chronic condition.
Today, trials of HIV vaccines or HIV cures include ongoing community consultation. Community representatives have also fought hard for a place at the table or on boards of national and international organizations working in HIV
This, then, is perhaps, the greatest legacy of AIDS and a lesson for Covid-19 and the pandemics to come: The best response to a health crisis is based on partnerships between government, scientists, the private sector, and citizen communities.
Something resembling that has been achieved with the setup of the Access to Covid-19 Tools Accelerator to help develop and distribute treatments, including vaccines, via the COVAX facility. The recent recommendation by the Independent Panel for Pandemic Preparedness and Response to engage the accelerator apparatus on other diseases post-Covid-19 appears to be a measured bet on such an approach bearing fruit.
There’s a long way to go in the response to HIV. Today, 38 million people are living with HIV, and each year 1.5 million are newly infected with it and nearly 700,000 die from it. Between 2020 and 2022, Covid-19 may increase the number of new HIV infections by somewhere between 123,000 and 293,000, and cause 69,000 to 148,000 additional AIDS-related deaths.
The Covid-19 pandemic in its current form will likely be history in a few years, existing as something akin to influenza or the common cold. With 40 years of accumulated research, combined with what has been learned from Covid-19 science over the past 16 months, we ought to be consigning HIV to history as well. Josephine deserves to live a healthy life, and her children and her friends’ children deserve a chance to live free of HIV and in an AIDS-free world.
Adeeba Kamarulzaman is the president of the International AIDS Society and professor of infectious diseases in the faculty of medicine at the University of Malaya.