Still Here, July 11: Links and transcript

Summary

In this episode of Still Here: Contributing writer Britta Shoot discusses the patchwork of care for people with complex chronic illnesses, like myalgic encephalomyelitis, and how insurance providers create a lose-lose situation for patients and healthcare providers.

Plus, in research, we’re looking at a study published in Nature Communications about a new antiviral drug prototype that prevented Long COVID in mice and could also help treat the disease.

And we share a little more about our summer fundraiser, including potential donation perks!

Find our Long COVID news and commentary podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript. We’re currently experimenting with our format, so this is an episode sans COVID trends focused on just one top story.

Jump to a specific part of the transcript:

• Intro
• People with ME, Long COVID priced out of care
• Research
• Outro

Still Here overlaps with The Sick Times’ newsletter, which publishes weekly.

Mentioned in this episode (in order of appearance):

• The Sick Times: Priced out: Some Long COVID and ME specialists charge high prices for concierge care
• The Sick Times x Long COVID Justice: Long COVID Essentials
• Help for Long COVID
• The Sick Times: Research updates, July 1
• The Sick Times: Summer fundraiser: Help keep our essential work going into 2026

Additional audio in this episode: 

• Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

Transcript

Intro (0:00) 

[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]

James Salanga: Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.

[Instrumental ends]

Miles Griffis: Hi, I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times. 

James: I’m James Salanga, and I’m Still Here’s producer.

Miles: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.

Betsy: But here at The Sick Times, we’re not. We’ll continue to bring you the latest Long COVID news and commentary each week.

Miles: Without pandemic denial, minimizing, or gaslighting.

James: On our website, social media platforms, our newsletter and, of course, this podcast. We’re continuing our experimentation with our podcast format, and this episode is focused on just one story plus a short research update.

And in this episode, contributing writer for The Sick Times, Britta Shoot, pulls back the curtain a little on why people with Long COVID and ME are getting priced out of care by the few specialists providing it.

Miles: Alongside that, we’ll also share some other Long COVID research updates.

In this episode, we’re looking at the discovery of a new antiviral drug prototype that prevented Long COVID in mice and could also help treat the disease.

James: And after a quick musical break, we’ll get to our interview with Britta about the high costs people with complex chronic conditions are having to pay some specialists to access care.

[instrumental segment of theme song plays]

The Sick Times: Priced out: Some Long COVID and ME specialists charge high prices for concierge care (1:32)

James: Current health insurance models don’t work well for people with complex conditions.

Some prominent specialists treating complex chronic illnesses like myalgic encephalomyelitis and Long COVID have stopped taking insurance, upping the rates or swapping to what’s called the concierge model. That requires patients to pay out of pocket monthly with treatments billed separately.

One specialist is charging [up to] $8,500 a month.

So with those high costs, some people are managing their symptoms through digital healthcare platforms and virtual clinics, which themselves can also carry subscription fees of more than $1,000 a month.

But providers say insurance companies, which don’t support time-intensive appointments, are to blame.

For The Sick Times, contributing writer Britta Shoot is sharing more about this current patchwork of available care, how patients are seeking support in the face of rising costs as need outpaces options, and how insurance has created a losing game for both healthcare providers and patients.

Thanks so much for coming on the podcast, Britta. Really appreciate you making time for this. Your story is about how this insurance-based healthcare model that we currently have in the U.S. is really creating a no-win situation for doctors and people who are living with complex chronic illness.

What does the landscape for specialists who are offering this care for folks look like?

Britta Shoot: This is a great question, and thanks for having me on to talk about it.

The piece looks at how the landscape is basically a complete patchwork, and the patchwork has a lot of holes.

There are way too few providers specializing in complex chronic conditions. And those that do have the specialized knowledge can then only serve so many people.

Several of the specialists that I talked to explained that they can’t afford to accept insurance because of the way that reimbursements are built.

So physicians are forced to sort of navigate some outdated criteria, and that includes short appointment times, and sometimes that’s narrow and singular diagnoses.

So somebody who goes to the doctor with a sore throat, maybe within 10 minutes they get tested for some very specific illnesses, and then they’re out the door with a prescription. That’s something that health insurance is sort of built to reimburse, right?

But if you have multiple complex chronic conditions, that takes a lot of time, and on the physician side, the physician just doesn’t have one neat box to check.

What I’m hoping is that this overview of this pretty big complex topic that could really be an entire series at least starts to chip away at something that many people in parts of the U.S. are encountering, which is that a lot of specialists are simply not accepting health insurance coverage at all anymore.

One thing that came up for a number of patients was that they didn’t receive much or any warning that their provider would no longer be taking insurance, and that their provider would be switching to a so-called self-pay model.

So that’s when you just pay out of pocket for your appointments.

And then the other thing that comes up in the story is that some of these providers are charging what is essentially a subscription fee to stay enrolled as a patient in their practice.

So both of these things happening really disrupts care and it really disrupts treatments.

And for patients, it’s really destabilizing and it’s really upsetting.

A lot of what patients are trying to figure out at this point, the folks that talk to me are trying to figure out how to piece this together on their own, whether that’s finding providers who are, you know, a little more flexible with the way that they take certain types of insurance or self-pay models or how to just work out treatment on their own.

The other thing I wanted to say is that this story originated with readers proactively reaching out to the sick times.

I’m really grateful that they did. And I don’t know if this is, like, too inside journalism for people, but that’s how a lot of good reporters come up with certain types of stories.

We just listen to what people tell us. So it’s very cool that people reached out. It was nice to be able to connect with such a diversity of folks for this piece.

James: So you mentioned that people who are getting care for their chronic complex illnesses shared a little more about what it’s been like to learn payment models for their healthcare are changing abruptly.

What other experiences did they share with you about looking for their care?

Britta: One thing that I hope comes through in the story is that there are a pretty wide variety of experiences represented.

So some people in the story have what we would all consider to be really excellent health insurance, either through their own employer or through their spouse’s employer. And even they struggle with coverage for appointments and treatments.

And then on the opposite end of the spectrum, some individuals have long-term disabilities and they can’t work for money. So they really can’t afford things like subscription fees just to access specialists.

But everybody across that entire range of experience spends time arguing with insurance providers, whether that’s a private company or a government program.

One person in the story even notes that her therapist stopped taking insurance because taking insurance was so bad for the therapist’s mental health. And that’s not an overstatement.

Like this is part of the provider’s job is to navigate the system.

But the system is built so poorly and so complexly that it’s really challenging.

Insurance is supposed to make accessing and providing healthcare easier, right? Like, that’s sort of why it exists. For many patients and physicians in the story, that’s just not what’s happening on either side, either as a patient or as a provider.

James: You know, something that you also touch on in the story and have touched on already is that some providers really feel backed into this model, this concierge model of requiring patients to pay out of pocket by the current healthcare system.

So I’d love to hear you talk a little bit more about why they feel that way and what research has said about the efficacy of structuring care through this concierge model.

Britta: This could be a whole series. This topic is really complex.

There’s a little bit of research on concierge models not offering meaningful improvement in patient care.

And what physicians that I interviewed for the story also said is also true, which is that insurance reimbursements do not compensate their time for complex appointments.

I don’t think this specific quote made it into the piece, but one of the physicians I interviewed explained not wanting to be the arbiter of who receives care. But that is also the effect of setting certain prices.

Everyone I talked to really just emphasized again and again, this is just a no-win situation.

No one feels like they’re sort of able to do the thing that they want to do, which is either give or receive complex care. It just feels fraught.

And just maybe to editorialize a little bit — this is just my thinking and this is not part of the reporting — but I think that a lot of us are used to thinking about subscription models for retail products or digital services.

And that model exists mostly to ensure that a retailer or a service provider has reliable revenue, right?

It’s advertised as a consumer convenience, but it’s not like corporations exist for the public benefit.

I think that part of what’s been tricky about this topic is that you overlay that model onto something like healthcare, and it’s really complicated on both sides to think about physicians needing reliable income and that patients are somehow a revenue base.

One person in the story explained that even having disposable income and excellent insurance from a corporate job, he still spent many, many thousands of dollars pursuing care.

Even people with really extraordinary privilege just still are really fighting to meet their needs.

And I feel like that says a lot about the collapse of care and treatments that other people cannot access at all.

James: Yeah, absolutely.

And I think it really highlights just the number of folks whose care and whose health kind of just falls through the cracks because there isn’t really a safety net in society.

And because it is so hard to just have this consistent care that they might need.

What options for self advocacy and care did you hear about from folks who are living with these illnesses, especially when, you know, as you write in the story, need is outpacing available care?

Britta: Yeah, I appreciate you asking that.

There’s a resource section at the end of the piece that includes a couple of different spots where folks can start to navigate some of this stuff.

There’s the resource collection that The Sick Times and Long COVID Justice put together last year that I’m personally a really big fan of.

There’s also a link to a newer website called Help for Long COVID. It’s a website that was made by the person I was describing a second ago.

His name is Sal Mattera, and he made it with his wife Stephanie, and it’s a Yelp-style collection of reviews of providers and treatment.

And their intention is to make it a resource that gives people a better starting point than searching through social media posts and posts on private patient groups and subreddits and sort of all those like disparate places where this information kind of lives without having, like, a central spot where people are keeping track of it.

James: Folks do like to hear if there’s anything else that maybe didn’t make it into the final cut of the story.

And so I was just wondering, do you have anything else you’d like to share about the story, any other reporting that you maybe want to just share with folks that, yeah, you weren’t able to include?

Britta: A couple of things that I think are interesting to highlight that are in there.

You know, Dr. [Ilene] Ruhoy noted that she really wishes that more physicians would specialize in the types of conditions that The Sick Times tends to focus on.

And that’s obviously not simple or straightforward, but it is part of what I hope the piece highlights.

You know, there just simply aren’t very many providers, and so — that’s it. There just aren’t a lot of providers.

You know, and I guess maybe something that might seem obvious, but it’s really important, is that a lot of people living with long-term illness spent a lot of time explaining their experiences to me for this story.

And I really hope that the effort and the energy that they spent on this is really meaningful to readers.

Multiple people reached out around this topic and said, you know, “This is what I’m running into. This is what I’m experiencing.”

And we were able to run with that because people reached out.

James: Britta, I know you also mentioned earlier that this is such an expansive topic.

And so, yeah, just was curious, is there anything else on your horizon in terms of covering the specific topic or covering more in this realm?

Britta: Yeah, I’m working on a second piece right now that is a little bit of a companion piece and focuses more specifically on a particular provider.

And it originated in the exact same way.

It’s folks reaching out to The Sick Times knowing that this is a publication that covers these things in depth and with the seriousness that is required. These kinds of stories, like meaningful stories about people’s lived experiences, typically originate with people who already read the publication.

The reporters know what other people tell them, right? If you tell us things, then we’ll know. Then we’ll know to write about it and look into it.

James: That all makes sense. And thanks again.

Britta: Thanks for making an audio accompaniment to the written piece. It’s always nice to say hi and let folks know what’s going on behind the scenes and a little bit more about what the story is about. So thank you.

James: Thanks so much for sharing, Britta.

You can read the story that Britta wrote at thesicktimes.org and find the link to that in our transcript. And next we’ll get to a research update.

Research (12:38)

[Miles’ voice echoes the word “Research” accompanied with a sound excerpted from the theme song]

Miles: In this episode’s research update, we’re looking at a study in nature communications.

Scientists discovered a new milestone.

They found a new antiviral drug prototype that prevented Long COVID in mice and could also help treat the disease.

The researchers stated the antiviral targets the coronavirus’s PL-pro protein, as opposed to the M-pro protein, which Paxlovid targets. They found this potential antiviral by screaming over 400,000 chemical compounds and said it may also be more effective in treating COVID-19 than Paxlovid.

The researchers wrote, “Collectively, our results provide further evidence that PL-pro is a promising antiviral drug target for COVID-19 with the potential to alleviate Long COVID outcomes.”

Of course, this is a prototype, so this drug still needs to go under larger clinical trials to assess its safety in humans.

Yeah, this is an interesting study.

It comes from WEHI, which is a large medical research institute in Australia that has looked at a lot of other diseases. So very preliminary stuff, but something to certainly keep an eye on and we’ll be looking out for more looking at this potential antiviral.

Betsy: As a U.S.-based publication, it’s always good to remember that there is promising research happening elsewhere in the world.

So not everything is impacted by our current administration and stuff like that.

Miles: Yeah, it’s great to see that. Just in our research updates this week, we have another one [study] you can access that looks at a new antiviral in Japan.

This [WEHI] study is coming out of Australia. So there are lots of studies and research clinical trials that are happening outside of the U.S. that we are keeping tabs on.

The Sick Times: Summer fundraiser: Help keep our essential work going into 2026 (14:20)

Betsy: And then one other thing to let people know about — so we’re recording this episode on July 1st, which is the first day of our summer fundraiser.

We’re planning to run this fundraiser through the month of July.

And with this fundraiser, we’re really trying to set ourselves up for more sustainability since the major grant that The Sick Times received last year in spring of 2024 is going to run out at the end of 2025.

So if we’re not prepared, that could potentially have a pretty big impact on our ability to continue the work that we’ve been doing. And so, you know, we’re really asking all of you, our listeners and readers to help us out in this moment.

If you’re able to donate anything you’re able to contribute, we really, really appreciate it.

Our two goals for this month are one, to raise $30,000 from our readers and two, is to have 100 new people set up recurring monthly donations.

So both of those will really help with our sustainability and help take us into 2026.

And of course, we always recognize that not everybody is able to donate, which is why we’ll never have a paywall, we’ll never require subscription or anything to read The Sick Times.

But any support that folks can provide really is helping to keep our work going and to help keep the news and commentary pieces available for everybody, regardless of their financial circumstances.

James: And I also, you know, I want to share too that we are also offering some new Sick Times merch for the folks who do start monthly gifts during this fundraiser.

So with any new monthly donation, we’ll be sending a pin your way that features our caladrius [bird] mascot and our mission, which as Miles has mentioned, you know, earlier in this podcast — “No pandemic denial, minimizing or gaslighting here.”

Or if you have the capacity to make a one-time donation over $50 or make a new monthly donation over $20 a month, we can send you a classic dad hat featuring our purple logo on a khaki base.

Betsy: It’s new for us to have swag.

We had stickers in the winter. So we’re, so we’re upgrading to baseball caps. Maybe in the future we’ll have more. But yeah, we’re excited about it.

James: Thanks so much to everyone who is listening to and reading our work.

As Betsy mentioned, you know, we will never have a paywall.

And this is just any support that you can give, whether that’s sharing this podcast, sharing the news of our fundraiser will help us regardless.

So we appreciate you.

Outro (16:36)

That’s all we have for you for this episode. You can stay up to date with our newsletter and coverage at thesicktimes.org.

[Instrumental theme song excerpt plays underneath the rest of the podcast]

Miles: We’ll continue reporting the information you need to better practice care.

Betsy: Solidarity with everyone still here. 

James: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.

Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis. 

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Our summer intern is Delfi Marchese. Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.

Thanks for listening.