How millions of Americans suffering from long COVID can find support

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• Geoff Bennett:

  An estimated 16 million Americans are suffering from long COVID, the condition develops after someone contracts COVID tests negative but continues to have symptoms. I recently spoke to Dr. Monica Verduzco-Gutierrez from the University of Texas Health San Antonio and Karyn Bishof, Founder of the COVID-19 Longhauler Advocacy Project, about what is being done to treat this illness and support those folks who are suffering.

  And Karyn, I want to start with you because you contracted COVID back in March 2020, working as a paramedic in South Florida. When did you first realize that you have long COVID symptoms?

• Karyn Bishof, Founder, COVID-19 Longhauler Advocacy Project:

  After getting COVID in March 2020, I, for about five weeks felt like I was getting better, but I wasn't getting better as quickly as everybody else, right? And symptoms that I had went away were coming back, symptoms that I never had before started, like — and these were symptoms that you never heard of, right? We only heard about fevers and shortness of breath and having a cough. These are symptoms that weren't in the mainstream media that many long haulers are struggling with, because our providers didn't believe us that these were related to COVID. So that 5, 6, 7, 8 week mark, you hear notoriously from long haulers about being the start of their long COVID.

• Geoff Bennett:

  Yeah, how are you feeling now? Are you still struggling with long COVID symptoms?

• Karyn Bishof:

  The number of long COVID symptoms that I still deal with are way too numerous to even mention. I still deal with over 80, two and a half years in, muscle activation syndrome, and CFS, fibromyalgia, I've been diagnosed with also chronic migraine and new daily persistent headaches, (inaudible), and many, many other debilitating conditions. When you have these alone, it's debilitating. Imagine having long COVID and all of these conditions combined which are referred to as long COVID and associated conditions.

• Geoff Bennett:

  And Dr. Gutierrez, what about that? I mean, where does the current research stand and what are the public health consequences of long haul COVID?

  Dr. Monica Verduzco-Gutierrez, University of Texas Health San Antonio: Research is coming out every day but it's still not fast enough. Really right now in guards to long COVID, we're still trying to figure out, you know, who are the people that it's — that are getting it, what is the presentation, what is the official definition? There is still so much that we have to learn. And it's unfortunate that there are people who are suffering on a daily basis, and we still don't have the answers. And we did really well on doing really quick research when it came to getting vaccines and getting these acute treatments to keep people from dying, which is wonderful. But now we need to put that same energy focused financial backing into getting treatments for a long COVID.

• Geoff Bennett:

  And Karyn, you touched on this earlier, but I just want to draw you out on this. How difficult has it been to get assistance from the government? Especially because now I imagine you test negative for COVID, even though you still have the symptoms of it?

• Karyn Bishof:

  Yeah, I mean, I think a lot of people hear long COVID, and they assume that somebody is still positive, long-term consequences of your COVID-19 infection whether or not your case was mild means that you are seeking medical care from providers who are not receiving mandated education on long COVID and its associated conditions, it means you're facing medical providers who have wait times of six months, 12 months, 18 months.

  And when we're talking about the lack of social safety nets, which is one of the largest, if not the largest barriers that the long COVID community faces. We're talking about long haulers who cannot even access waivers or forms that they need to get into many of these social support programs like Social Security disability where long COVID is not an accepted or recognized condition per se, but also to get workplace accommodations to get into programs that require work requirements, sometimes like food assistance, or temporary cash assistance.

• Geoff Bennett:

  And Dr. Gutierrez, when Karyn talks about the long COVID community, who is that? Which groups are most affected by long haul COVID?

• Dr. Monica Verduzco-Gutierrez:

  Now, we know that long COVID can happen to anyone, the majority of people who develop long COVID had mild COVID. The other numbers that we're seeing is that it's going to be a population of people who are in their 40s and 50s. And also disproportionately affect women as well. We are also seeing in the household pulse survey that recently was came out and — is on the CDC website, talks also about populations who are marginalized, inclusive of persons who are Hispanic, Black, who, of course, we know have also been disproportionately affected by getting COVID also have more long COVID as well.

  So it really doesn't matter the background of the person, as far as, you know, were they healthy? Were they not healthy? Their age, there is going to be a risk of getting long COVID.

• Geoff Bennett:

  Is there a specific diagnostic test yet to determine whether or not someone has long COVID?

• Dr. Monica Verduzco-Gutierrez:

  No, we don't have that. We didn't even have a good standard definition. Because what the CDC says, the NIH, the World Health Organization, even those definitions are a little bit different when you compare across.

• Geoff Bennett:

  And then beyond all that, Karyn, what more should be done to help give people suffering from long COVID the help that they need?

• Karyn Bishof:

  Absolutely. I mean, I think again, the biggest help that we need is national education and awareness campaigns. More than half of the country has still never even heard the term long COVID, let alone understand what that encompasses. And I think that the response that our community has right now is we have no help. And we see the messaging of everyone's going to get COVID at some point, but there's no messaging of, if you are that one and five who get long COVID, or if you are that 41% that we found in our community that has filed for or is about to file for social security disability, and you don't have a plan and you don't have a backup and you don't have a support system and your family or anyone else who can help you. And there are no social safety nets. There are no government programs that can help you. What do you do? We're seeing people ration medications, we're seeing people forgo medical care, which is leading to even worse medical conditions or potentially even death down the road. And that's a failed public health policy that we can easily address but we're refusing to do.

• Geoff Bennett:

  Well, Karyn Bishof and Dr. Gutierrez, I thank you both for your time and your insights on this important topic.