March marks four years since COVID-19 was declared a global pandemic, changing our lives forever. We know that COVID is here to stay. But that doesn’t mean we have to accept business as usual. It’s time to acknowledge that the coronavirus has not only been a mass death event— causing 3.4 million deaths and counting across the globe— but also a mass disabling event.
Long COVID continues to destroy countless lives and livelihoods while elected leaders pretend the pandemic has ended. A recent study found that nearly 1 in 4 American adults who get COVID-19 experience long COVID. Almost 1 out of 3 adults who suffer from long COVID say their symptoms have reduced their ability to carry out daily activities. As of 2022, 16 million working-age Americans had long COVID, with up to 4 million unable to work because of the illness. The World Health Organization defines long COVID as the continuation or development of new symptoms three months after the initial infection.
Advocates declared March 15 Long COVID Awareness Day to draw attention to this unfolding crisis.
I’m the co-founder and senior fellow for a project called Long COVID Justice. I am also a person living with HIV and multiple chronic illnesses, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a highly disabling illness that causes soul-crushing fatigue and chronic pain. Up to 80% of ME/CFS cases are triggered by infection. #MillionsMissing, a global ME/CFS and long COVID awareness campaign organized by #MEAction, has reported on several preliminary studies that show that a significant number of those diagnosed with long COVID now have ME/CFS.
The pandemic exacerbated existing problems that chronically ill and disabled folks like me have long faced, like ableism, bias, and, for many, the lack of access to competent care or a reliable safety net.
Before I was officially diagnosed with ME/CFS, I became disabled and unable to work. I used to be a hairdresser and had a promising career. But I lost all of that when my chronic pain and fatigue made it too difficult to function. We live in a society that glorifies working to burn out and pushing yourself past your limits, so finding yourself suddenly unable to participate in the workforce and unable to get a proper medical diagnosis can be terrifying and demoralizing.
Worse yet, it can be financially ruinous.
Because of my HIV status, once I wasn’t able to work and I’d used up all of my savings and drained my retirement fund, I was eligible for rent assistance and Medicaid. I got food stamps and a small cash allowance. I had access to my medications, and my HIV was controlled. Later, I got assistance to pay for my health insurance through the marketplace. My insurance premiums, my co-pays, and my medications were all covered through the AIDS Drug Assistance Program. There were systems in place to make sure that I got the care I needed and received the medications to manage my HIV. None of that exists for patients with complex chronic illnesses like ME/CFS or long COVID.
Because there is so little support for people with complex chronic illnesses, they often face housing instability, food insecurity, and an impossible bureaucracy standing in the way of receiving healthcare. Many fall into medical debt and poverty.
It doesn’t have to be this way. We call on our elected leaders to commit to continued funding of programs for the HIV community, and to creating new programs to support those with ME/CFS or long COVID. As a nation it is essential to prioritize healthcare over warfare.
I’ve seen what a strong safety net can do. People suffering from long COVID and other chronic illnesses should be entitled to a safety net, too. It’s time to expand rental assistance and Medicaid, as well as child tax credits and any other aid that could alleviate financial burdens for those who are chronically ill. Whether you’re a parent, teacher, or medical provider – we all need to fight for accessible safety nets (that do not require people to lose it all before providing assistance) for diseases such as long COVID and other complex chronic illnesses. At any point, any one of us could find ourselves among their ranks.
Another way the AIDS care model could be replicated is with peer navigators and peer educators, so people with chronic illnesses can get trained and paid to provide assistance based on their lived experience.
Although long COVID is new, there is a long history of research, experience, and activism by people with complex chronic illnesses. By organizing together, we can reduce the isolation people experience when they become ill. Together, we can achieve change.
I was only able to return to work because I found a wonderful organization that lets me work remotely so that I can manage my illness. Many accessibility options offered at the height of the pandemic, which are now being stripped away, benefited those with chronic illness. Let’s take this opportunity to reimagine disability inclusion and accessibility.
The best way to avoid long COVID is not to get COVID. We need to continue practicing individual mitigation measures, like getting vaccinated, and collective mitigation measures, like fighting for policies that keep us safe. We’re calling on elected leaders to join our fight for disability justice, accessibility, and a safety net for all.
March marks four years since COVID-19 was declared a global pandemic, changing our lives forever: Gabriel San Emeterio (they/elle/she/he) is a queer and disabled activist from Mexico. They are part time faculty at the Silberman School of Social Work at Hunter College, and they co-founded Strategies for High Impact and its project Long COVID Justice in 2021.