FORGOTTEN BUT NOT GONE: On World AIDS Day, People with HIV, Long COVID and ME/CFS Protest Biden’s Pandemics Neglect, Urge Funding from Congress in Demonstration Outside the White House

Jessica Bassett (Health GAP): 929-866-3929|
JD Davids (Strategies for High Impact): 646-431-7525|

December 1, 2022


In an unprecedented on-site and virtual World AIDS Day protest, people with HIV united with chronically ill and disabled people with Long COVID, myalgic encephalomyelitis (ME/CFS), and others, in a rally today outside the White House. Together, they decried President Biden’s neglect of chronic pandemics that are disabling and killing millions of people around the world. Protesters demanded that President Biden and Congress fund critical global and domestic health measures, including those in the current supplemental funding bill and a $750 million increase in fiscal year 2023 for the global President’s Emergency Plan for AIDS Relief (PEPFAR), and sustain the domestic COVID public health emergency that has brought healthcare access to 15 million people in the United States.

After a short procession to the White House, protesters staged a die-in with gravestones and chalk outlines representing people lost to global pandemics and those whose lives are at risk, abandoned by Biden and Congress. The protest featured speakers directly impacted by COVID, HIV, Long COVID and ME/CFS telling their stories, and those of people worldwide who are unable to attend due to pandemic-induced chronic illness, disability and lack of COVID precautions for travelers. The virtual action included a live stream, making the protest accessible to everyone, wherever they were located, and an online action delivering messages to policymakers. 

“As a person living with HIV as well as ME/CFS, I am at the intersection of pandemics — and instead of seeing plans and action, I see pain, injustice and despair,” said Gabriel San Emeterio, co-founder of Strategies for High Impact and its Network for Long COVID Justice. “We’ve made such gains against HIV, and yet one person every minute still dies of AIDS worldwide. Here in the United States, we see big racial disparities in HIV progress. And like most people with ME/CFS — with rates skyrocketing due to Long COVID — I have virtually no access to care or treatment, unlike what I am able to receive for HIV, with little funding going to the promising research that could confront this often-severe, debilitating disease.”  

“From AIDS to COVID to mpox: Black and brown people are always disproportionately harmed by pandemics–in the U.S. and around the world–because policymakers treat pandemics like they’re over even though they’re still devastating our communities,” said José de Marco of Black and Latinx Community Control Philadelphia. “President Biden refuses to fight for more funding for global AIDS, even though PEPFAR has been flat funded for a decade and there’s a global AIDS death every minute. He declared the COVID pandemic over even though hundreds of Americans die of COVID every day and Black people are twice as likely as white people to die from COVID-19. Biden’s empty talk about equality is killing us.”

“One in five people who has COVID will have long-term or even lifelong symptoms, autoimmune conditions, heart damage, strokes, or other disabling consequences like ME/CFS. And people living with HIV are four times as likely to get Long COVID,” explained Ben HsuBorger of MEAction, who has been living with ME/CFS for 17 years.“We continue to act like these diseases, disabling conditions and pandemics are not interconnected, and we pay the price with our lives. How can Biden and Congress even consider cutting the funds that are our only hope of stemming these colliding pandemics, through vaccines and other layers of protection like masks, and for the medical care, treatment and research to end these acute and chronic harms?”

“I rallied today because I lost my father to COVID and almost lost my son to it too,” said Fari Ghamina Tumpe of SPACES In Action, an affiliate of the Center for Popular Democracy. “Today is my son’s birthday, and somehow he’s still with us despite six ER visits, pneumonia, and blood clots. My son cannot risk endless COVID reinfections. And folks like us can’t risk losing health insurance during a pandemic, which will happen to millions of people unless President Biden extends the public health declaration on COVID.”

“President Biden and Congress are leading multiple failed pandemic responses, putting our communities in the crosshairs,” said Asia Russell, Executive Director of Health GAP. “Right now, Biden and Congress are guaranteeing pandemics will continue to be chronic. It doesn’t have to be this way. In 2023, we must put an end to a decade of deadly flat funding for PEPFAR with a $750 million increase this year and win a more equitable COVID-19 response that acknowledges the ongoing suffering and death caused by policies that let these threats ravage our communities.”

Protesters demanded that President Biden and Congress: 

  • Commit $100 million to fund the South African mRNA hub and ensure the equitable distribution of vaccines worldwide.
  • Announce the creation and funding of a Domestic and Global Response Plan for Long COVID and Associated Diseases.  
  • Reverse the deadly harms of ten years of flat funding of the U.S.-bilateral global AIDS response, and address the disproportionate risk of people with HIV to surging pandemics, from mpox to Long COVID and more, with a $750 million funding increase for PEPFAR in FY23 and FY24.
  • Renew the COVID Public Health Emergency in the U.S. — which has expanded much-needed healthcare coverage and access to free tests and vaccines– beyond January 2023. Lifting the emergency declaration could cause up to 15 million people to lose Medicaid coverage during a surging pandemic.
  • Pass funding for Pandemic Preparedness, including $750 million for Long COVID, before the end of 2022.

Today’s action was endorsed by Health GAP, Long COVID Justice, Strategies for High Impact, Justice is Global, Center for Popular Democracy Action, ACT UP Philadelphia, #MEAction, the U.S. Caucus of People Living with HIV, SPACES in Action, Peoples Vaccine Alliance, Black and Latinx Community Control, African Services Committee, Public Citizen, Treatment Action Group, ACT UP NY, Put People First Pennsylvania, and Rise and Resist. 

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