During the State of the Union address on January 28, 2003, George W. Bush announced the creation of the President’s Emergency Response for AIDS Relief (PEPFAR). On the floor of the House, the president cited heart-wrenching statistics about the number of AIDS-deaths, pointed to the lack of treatment access despite the reduced cost of antiretrovirals, and, most importantly, took action by calling for $15 billion over the next 5 years to bring lifesaving HIV treatment, care and prevention to people in some of the countries that were hardest hit by the AIDS pandemic around the globe .
As Trump prepares to deliver his State of the Union address, the launch of PEPFAR in 2003 feels light-years away. Instead of preparing to announce the creation of the largest fund in history from any country to address a single disease, he has been broadcasting a demand for $5 billion in taxpayer money to fund a racist border wall while holding U.S. workers’ paychecks hostage. The contrast is stark and sickening.
If we had continued funding PEPFAR fully since 2003 instead of letting funding levels slip into a flat-line for the last seven years, the HIV pandemic would look remarkably different today.
Instead, the unconscionable lack of political will in recent years has created a world in which people are forced to jump through hoop after proverbial hoop to get tested for HIV, pick up their medicines, or meet with their doctor, and where many don’t have the opportunity to access lifesaving care at all.
In rural Malawi, some patients have to travel more than 21 miles (or 34 km) to access their closest health center and when they get there they often then wait many hours before they are seen. People living with HIV must set aside a whole day every two months to wait at the clinic to collect their HIV treatment, causing huge disruption to their lives as workers and carers.
In South Africa, people often arrive at the clinic only to find out their medicines are not available. When there are stock-outs of lifesaving medicines, some patients are given a few pills to share with a neighbor, some get new dosages and a change of medicine causing confusion and disruption, and others simply get sent home empty-handed. Overburdened and under-resourced nurses shout at patients waiting for services, and too few people are screened for Tuberculosis (TB)—the leading cause of death for people with HIV—as they pack into small waiting areas without access to tissues or masks.
In Kenya, marginalized populations, including LGBT people, people who inject drugs, and sex workers, often forego seeking lifesaving health services entirely (including lifesaving HIV prevention and treatment), for fear of prejudice and discrimination. And overcrowded health care facilities, make it hard for a patient to see their doctor in private complicating doctor-patient confidentiality.
Since 2003, the PEPFAR program has had a transformational impact on the lives of millions of people around the world, and has been successful at reaching populations that don’t ordinarily come to health clinics. But for us to end the AIDS pandemic, PEPFAR needs be scaled up not held back by political indifference or flat-funding. More funding is needed now to make sure that men, women, children, gay people, transgender people, people who inject drugs, sex workers, and young people–all people who need it–can access the quality health care they need.
In 2019, we want to see action from our Members of Congress who, by standing up and demanding increases to fund the global HIV response, would be putting so little on the line to do so much to end the global HIV pandemic. It takes bravery to go to a health center even when you’re afraid that you’ll face stigma from your health care providers, and to take an HIV test when you know you’re at high risk. We expect to see our legislators to be courageous and to disrupt business as usual to save millions of lives of people living with HIV.
The next president must once again be a champion for global health and ending the global AIDS crisis. George W. Bush announced the creation of PEPFAR not because of his own good will, but because activists pressured him to. It’s up to us: an organized, powerful grassroots movement to make the 2020 presidential candidates feel the urgency of people’s lives on their shoulders while they are giving stump speeches in New Hampshire and Iowa, tweeting hot takes about current issues, and detailing their policy platforms.
AIDS activists will show up at town halls, local diners, high school auditoriums, and hometown rallies, sending a message to candidates loud and clear: people with AIDS will not be ignored.