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Disability rights advocates meet with CDC director Walensky

AILSA CHANG, HOST:

Throughout the pandemic, we've heard that people with underlying conditions are at a greater risk for severe complications. That sentiment can often leave those people feeling vulnerable, and the way public officials talk about it can sound offensive or dismissive to them.

That's what happened a few days ago after an ABC News interview with CDC Director Rochelle Walensky. It is worth noting that Walensky's comments were edited for broadcast, and the CDC said that the context had been edited out of the interview. But this afternoon, disability rights advocates met with Walensky to discuss what chronically ill, immunocompromised and disabled Americans need from the CDC.

Matthew Cortland is a senior resident fellow at Data for Progress and was present at the meeting. Welcome.

MATTHEW CORTLAND: Thank you so much for having me.

CHANG: So going into today's gathering, what were you hoping to help the CDC director understand?

CORTLAND: The first thing was it was really necessary to explain to Director Walensky why her comments - and to be clear, they were taken out of context - but in their full context, the director was saying that it was, quote, "encouraging" that, quote, "the unwell" - or people with four or more comorbidities or chronic illnesses or underlying health conditions - suffered 75% of COVID-19 mortality amongst those who are vaccinated. And we've really needed to explain to Director Walensky that it is not encouraging to the tens of millions of Americans who are disabled, who are chronically ill, who are immunocompromised, who fall into the category she was talking about, it is not encouraging to us that our people are disproportionately dying. And she needed to understand that as the very first step.

CHANG: But this is about more than simply a single comment, right? Like, you have been concerned about messaging from top public health officials throughout this pandemic.

CORTLAND: We've been concerned about policy and messaging. Ableism or the devaluing of the lives of chronically ill, disabled and immunocompromised people is pervasive in public health. It was something I first learned during my graduate training in public health.

Ableism is a systemic problem. It is a systemic problem in public health. It has been a systemic problem from CDC and, to be honest with you, the entire federal government. The HHS and - it is not just this one comment. You are absolutely correct. It is a pervasive policy, substantive problem that disabled, chronically ill and immunocompromised people - literally tens of millions of us - are not being considered in the technical guidance that CDC issues, are in the distribution plans of HHS. It's really - it is a large and pervasive problem.

CHANG: So ultimately, how do you feel today's meeting went with Walensky?

CORTLAND: I think it is the first step. It is a necessary first step, but it is only a first step. We really need CDC to continue to really - to commit to partnering with the disability community to develop substantive technical guidance and policy plans that will center chronically ill, immunocompromised and disabled people so that we're no longer left behind. I think we successfully educated the director.

And we are looking for a public apology to the disability community broadly, not just the people that she met with today. And we are looking for an ongoing commitment to develop in consultation with and collaboration with disabled, chronically ill and immunocompromised stakeholders substantive plans to really change the course of the pandemic for my community.

CHANG: In just the few seconds we have left, I do have a larger question about, you know, so many people who have developed long COVID have entered the disability community. And I'm curious, how has your work in disability rights been transformed by long COVID?

CORTLAND: It is a mass disabling event, and it requires a massive investment of resources. It is transforming the health care service and delivery landscape. And our leaders must not, cannot leave people who have acquired a disability through long COVID behind. We need substantial research into post-viral illnesses broadly, and that is a commitment that the Biden administration needs to keep and follow through on.

CHANG: So sorry. We'll have to leave it there. That is Matthew Cortland, senior resident fellow at Data for Progress. Thank you.

CORTLAND: Thank you. Transcript provided by NPR, Copyright NPR.

Ailsa Chang is an award-winning journalist who hosts All Things Considered along with Ari Shapiro, Audie Cornish, and Mary Louise Kelly. She landed in public radio after practicing law for a few years.
Sarah Handel

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