Pandemics are Chronic: an Interview with JD Davids of the Network for Long COVID Justice

JD Davids has long played an important and visible role within the HIV response. He continues to do so today, working at the center of many intersecting issues, including chronic illness, social justice, and — as the founder of Strategies for High Impact (S4HI) and its Network for Long COVID Justice— the impact of the COVID-19 pandemic.

Not only is FCAA is partnering with S4HI on a webinar in December, but just at publication time, S4HI announced a groundbreaking new $1.5 million investment from the Balvi Fund, a scientific investment and direct gifting fund supporting high-value COVID-related projects, that will bring cutting edge communications science to the work of people living with long COVID and other chronic conditions. S4HI is also a recipient of the first cohort of the Disability Frontlines Fund of the Third Wave Fund.

As such, FCAA was excited to sit down with JD over zoom to hear about his work and what people affected by both HIV and Long COVID need most.

You’ve worked with many pivotal groups, on many revolutionary initiatives, over the years. Tell us about the work you’re doing now and why it was so important to you.

The Network for Long COVID Justice is seeking to remap how communities of chronically ill and disabled people, and the organizations that serve us, look at the complexities of our lives. It is particularly critical in this time of COVID-19, a mass disabling event which is disproportionately harming people living with HIV.

I was concerned, even in the earliest days of the pandemic, when it was described as something that wasn’t much of a concern because it was only going to affect people who are already sick or disabled. No one in the media or the government was talking to people who were sick or disabled about what this may mean for us. So, I pulled together a webinar in early March 2020 to ask people with chronic conditions, “What are your concerns? What are your questions?” Since then, I’ve stayed really centered in the emergence of COVID-19 as a chronic condition.

There’s many people in the HIV community who are dealing with multiple chronic conditions. When people are long term survivors of HIV, they deal with complexities that aren’t adequately addressed by the health care system or systems of care and support. Even in the best case scenario, people may be able to get some treatment and care, but other health conditions are left adrift. For example, people living with HIV are about four times as likely to be affected by long COVID. Yet, many people with HIV are being told, “Well, you know, you’re getting older. You’re living with HIV.” As if Long COVID is just something people have to deal with on their own.

We’ve been able to connect the history and present day of HIV advocacy and service delivery with this new, emerging community of highly affected people in the COVID-19 pandemic. For example, we’ve been able to have Long COVID research advocates meet with HIV treatment activists who have been working within and outside CDC and NIH for years. Together, we were able to talk about the strategies and structures of research advocacy. We’ve been able to talk about COVID and Long COVID through an HIV community lens.

It’s really stunning how much people have not been able to dial into the particular information that they and their community needs. We are trying to bridge that gap. We’ve heard so much misinformation. We are trying to break through the noise to give people the information — and the humanity — they need.

Where have you seen progress in the past two years? And where are the biggest challenges?

In the beginning of the pandemic, as operations shifted more to remote and virtual work, there was, in some ways, a flourishing of access. Case managers got iPads to rural folks so they could get online. Organizations helped pay for cell phone connections. I was working closely with the Reunion Project when the pandemic started. We turned meetings into webinars and people were able to participate who had never been able to come in person. Events like these are very concrete measures against isolation.

Today, there have obviously been changes in the capacity to treat COVID. And, access to vaccination has reduced rates of severe disease and mortality. However, there are people who remain at high risk themselves and/or in community with people who are at high risk. Even the baseline of risk might be uncomfortably high if more was known about what it’s really like to live with these kinds of complex chronic conditions and how much it affects your life.

What do community members need from funders to continue to respond to the pandemic and to the impact of Long COVID?

In the emergence of the COVID-19 pandemic, people were moved to be able to contribute billions of dollars in rapid relief, across all sectors of philanthropy; to do anything they could to make things work. But, as we know well in the HIV community, there is a difference between an ongoing versus acute disaster. And we didn’t see a recognition that the situation was likely to continue.

Even before the pandemic, there was never anywhere near adequate support for disability justice and disabled organizers. COVID-19 and Long COVID raises the bar for understanding and being transparent about the complexities of funding. It’s not going to work to have one year program grants change everything when ableism is a structural condition that’s baked into our society. There’s a lot to do to be able to shift funding and power in a way that is untethered from ablest standards.

We need to be able to recognize how people of color, disabled, queer and trans people, and immigrants with disabilities have crafted worlds of survival and interdependence. How do we apply resources to what disabled people living with forced poverty, huge rates of marginalization and isolation, have learned from each other by taking care of one another? How can we start recognizing and supporting that?

Look to the caregivers and program leaders in the communities. Provide capacity building, technical assistance, and training support to mentor people so that they are able to be the leaders. They already are leaders, but help them with the skills that will allow them to teach others to lead, too. We already know how to do this — it’s been the most vibrant part of the HIV community response.

What lessons learned from the HIV response can be applied to Long COVID?

Long COVID is not one thing. We need to emulate what we have across the spectrum for HIV — the Ryan White Care Act, wraparound services, and the understanding that it’s not just about ARVs, but also access to housing and support, etc. In the case of complex chronic conditions, there’s a need — just like there is with respect to HIV — for provider training.

There’s such a need for provider and service infrastructure, as well as education about Long COVID. We need to bring information, treatment, care, and support to the millions of Americans who are dealing with it, many of whom were already chronically ill. How do we work within the care and service sectors that exist — for HIV, for diabetes, for elder care — to be able to bring rapid relief? How do we bring economic support for people who have lost their capacity to work? There’s a lot that we could do right now.

I’m confident that we’re going to have treatment for at least a big slice of people with Long COVID. What we need to be doing now is treatment preparedness. With HIV, we had effective treatment available in the U.S. and other wealthy nations for years before activists around the world united to bring the price down through generics and extend access worldwide through programs like the Global Fund and PEPFAR.

We don’t need to let that happen now. We need to ensure treatments are going to be available to people worldwide. And we need to start the treatment preparedness at the community level so people have the health, education, knowledge, and access to be able to rapidly access treatment if they wish to.

What does HIV-informed funding mean to you and how can it be applied to the work you are doing in terms of Long COVID?

One key is to really center the caring economy and caring work. The origin of the HIV community was people caring for one another and then demanding that the government and funding entities also care. What does it mean to center us in terms of our wisdom and our methods without requiring chronically ill and disabled people to be marginalized, impoverished, and isolated? That means really supporting community level solutions; not just paying for what it costs to provide them, but leveraging these models so that we can bring things to scale in other places.

We’ve seen from the HIV response thatwe can have incredible breakthroughs and treatments and still lack access and experience enormous loss. We need to have  systems in place to actually get treatment to people. No pure biomedical solution can do the work on its own.

There’s a lot going into technological fixes that aren’t going to reach many of those who are most affected. But we need the low-tech stuff. We need child care, training, economic supports, housing. We need all of that. Let’s not make all the same mistakes again. Let’s get right to what works.

Learn more about JD and this work online at: