On World AIDS Day on December 1, a group of protestors including people impacted by HIV, COVID, Long COVID and other chronic conditions are coming together for an action at the White House. They are demanding federal funding for national and global pandemics of HIV, COVID-19, Long COVID, monkeypox, ebola, cholera, tuberculosis and other diseases.
Numerous organizations have endorsed or will take part in the action, including the Philadelphia and New York chapters of ACT UP, Strategies for High Impact, Justice is Global, Peoples Vaccine Alliance, Long COVID Justice, Health GAP, Put People First Pennsylvania, Black and Latinx Community Control, African Services Committee and others. The protest will take place in person and will be streamed on various social media channels, including YouTube. Most endorsing organizations will participate in the protest remotely.
In addition to speeches, protestors will stage a die-in with gravestones and chalk outlines to symbolize people who are dying, and those who the Biden administration has forgotten but who are still here.
“World AIDS Day is a time to take stock of not only what is happening with the global HIV epidemic, but [to ask] have we learned the lessons of the epidemic to benefit all people who are harmed by pandemics? The answer is no,” said JD Davids, co-founder of Strategies For High Impact and the Network for Long COVID Justice. “When we look at what it’s taken to begin to bring HIV under control in the U.S. and around the world and compare that to what we’ve done for other pandemics – particularly those with a strong, complex chronic disease component that can linger for a lifetime – we have failed. Nowhere is that more clear than in the crisis of Long COVID and associated diseases.”
The groups’ demands of the federal government include a $50 million commitment to fund the South African mRNA hub; eradicating big pharmaceutical greed that maintains vaccine, testing and treatment inequality; to form a Global and Domestic Response Plan for Long COVID that includes funding, policies, programs, research and accountability that will impact the communities most in need; reversing the harms that arose from 10 years of flat funding of the U.S.-bilateral global AIDS response; and devising a way to mitigate the problem that people living with HIV are disproportionately vulnerable to pandemics like monkeypox and COVID-19. Also on the list is significant funding increases for fiscal years 23 and 24.
According to UNAIDS Global AIDS Update 2022, 650,000 people died of AIDS-related causes in 2021, which equated to one person dying of AIDS per minute. The amount of people taking HIV treatment increased at a slower rate in 2021 than it has in over 10 years.
“Where a lot of people celebrate World AIDS Day, ACT UP believes that’s the time when we should be raising our anger and making our voices heard,” said Jazmyn Henderson, an organizer with ACT UP Philadelphia and Black and Latinx Community Control, who will be speaking at the protest. “Even now HIV is not done, especially in the Black and Brown community, especially in trans communities. This year it’s equally pressing because we’re dealing with four pandemics at once; we got COVID, we got HIV, we got monkeypox, we got an opioid epidemic going on. All of this stuff is converging at once, and the White House has absolutely no plan for how to deal with any of it.”
People living with HIV are four times as likely to experience Long COVID, Davids said. It can include a range of health issues like heart problems, elevated risk of stroke and pulmonary embolisms, as well as fatigue and brain fog. Despite claims of a lack of treatment and testing for long COVID, testing is available for the individual conditions that constitute long COVID.
“There’s no one test or treatment for long COVID in its entirety,” Davids said. “But there’s many, many tests, if done correctly, that could show that people are having evidence of blood clots, that people are having heart problems, and that people are experiencing dysautonomia, which has to do with abnormalities of heart rate and blood pressure, as well as post exertion malaise, which has to do with extreme fatigue, brain fog.”
In the absence of a federal plan to combat these intersecting pandemics, Davids called for local and state governments to invest in accurate public information and education about Long Covid and other post viral conditions “to let people know the basic facts, which include that people can seemingly fully recover from acute COVID and then face noticeable or silent complications, weeks or months later.”
Henderson criticized Philadelphia leadership’s approach to providing shelter for people experiencing homelessness when COVID was initially surging in 2020.
“When COVID hit the first time, [the City] got all that money from the COVID Protection Plan, and they were supposed to put vulnerable people up in housing,” Henderson said. “There was a hotel at the airport and it housed nobody. Instead, they had a whole cadre of homeless folks in terminal A that they could have put in that hotel.”
She pointed out that COVID, like HIV, disproportionately impacts Black and Brown communities, who often don’t have the luxury of staying home from work in times of high rates of disease transmission.
“All of our pandemic issues can be solved with something as simple as a plan,” Henderson said. “There isn’t a plan for when the next pandemic hits. We saw that with monkeypox. [The government] had 40-year-old vaccines, they had no way to produce vaccines quickly.” She also condemned health departments’ LGBTQ-centric public messaging around monkeypox as detrimental to staunching the spread of the disease.
One of the messages that Davids wants to drive home through this protest is that pandemics produce chronic conditions that can manifest months or years after infection. There needs to be concrete plans in place to control the spread of disease.
“Even though it took an average 10 years for people to experience actual noticeable symptoms of immune suppression after an initial HIV infection, that’s very much a chronic condition and pandemic,” Davids said. “We need to be aware that part of why we need to act quickly and aggressively to curtail the COVID pandemic and to address long COVID, is we don’t know what long COVID will look like in 10 or 20 years. Repeated COVID infections is like rolling the dice of risking long-term or permanent complications, or death.”