Treating a disease we can't define

Transcript

NIALA BOODHOO: Good morning! Welcome to Axios Today!

It’s Monday, May 9th. I’m Niala Boodhoo.

Here’s what you need to know today: Western allies make more moves to support Ukraine.

But first, today’s One Big Thing: treating the disease that's hard to define: long COVID.

About 1 million Americans have died from COVID-19 since the pandemic began. And many experts now say long COVID is emerging as the next phase of this global health crisis. Axios healthcare editor Tina Reed has three big things to understand about the still mysterious after effects some suffer from the virus.

TINA REED: So the first big thing is this is really not just one disorder, but experts believe it may likely be a number of different disorders with a number of different mechanisms driving long COVID. Speaking to different patients, one complained of immense fatigue and brain fog, another spoke about debilitating pain and like her skin was on fire. A specialist was telling me that the kids she sees are more likely to suffer from GI symptoms and dizziness. And some long COVID patients landed in the hospital from their infection while others barely got sick.

The second big thing is looking at who's at increased risk. Women and girls appear to experience long COVID symptoms more often than men and boys. As well as having type two diabetes could mean a patient has a higher chance of developing long COVID. One important point, the vaccinated were less likely to get long COVID studies show, but, among the two long COVID patients I spoke with who got COVID in January, they both had been vaccinated.

The third thing that I learned about long COVID is that there's a number of different treatments doctors have been looking to. They've been looking to other disorders such as chronic fatigue syndrome or a syndrome known as POTS, which is a condition that affects blood flow, for ideas about how to treat patients. In certain patients they've connected the disorder to serotonin levels or to the vagus nerve. And so they found some success with anti-depressants or vagal nerve stimulators. Some patients have found success with antihistamines. And so while one treatment may work for one patient, it may not work for another.

NIALA: That’s Axios’ Tina Reed. As we learn more about treatment for long COVID, clinics have been opening up around the country specifically for these patients. But demand is outpacing supply for this kind of care. Axios DC reporter Chelsea Cirruzzo has been reporting on this. Chelsea what exactly are these long COVID clinics and who qualifies for care at one?

CHELSEA CIRRUZZO: So a long COVID clinic um and there are basically dozens of these across the US they are these sort of pop-up clinics that have been attached to health care systems specifically to care for people presenting with long COVID symptoms. So people will come in whether they've been referred by their doctor or that they have maybe even been discharged from the ICU after their COVID infection continuing to have symptoms and at these clinics they are connected with different specialists. So it's kind of like a makeshift response to long COVID and the vast number of symptoms that people have. But their demand like you said is absolutely outweighs what they have. I mean they have long wait lists. The long COVID clinic in my city I'm in Washington DC um I just checked their own clinic and they have a wait list. So providers are really struggling to meet the demand of people coming in.

NIALA: I feel like the first time I talked to someone who was developing a long COVID clinic was almost two years ago. Does the medical community feel like they have more knowledge now?

CHELSEA: Of course, yeah, I mean a lot of the providers I spoke with told me that they're learning a little bit more about how to treat people. Some providers have told me they've had people who have improved and left the clinic which is really exciting. But there's still just nothing that seems to be the best thing for everybody. It just seems to be something that works for individual people and even then um some people still haven't recovered. So the research is still ongoing. The NIH has actually invested 1.15 billion in studying long COVID and that started last year. The president's fiscal budget for the next year also includes funding for long COVID centers.

NIALA: Chelsea in the past we've talked about on the money side of this how difficult it is for patients to pay for this care. Has there been any improvement on that front?

CHELSEA: A lot of people in these clinics are people who do have the means to pay for this. They can take time off work, they can pay out of pocket costs. One provider at the Mayo Clinic told me that makes him worry that people who can't do that aren't coming to the clinic and they're suffering without these resources. So Insurance companies are covering I think a lot of it but there are people who may be falling through the cracks because they can't take the other costs they can't do travel they can't do out of pocket. Alot of providers express me they're optimistic that these resources could be expanded. I mean we've seen a lot of interventions over COVID have been offered for free or for reduced costs. I think there is a definite hope and optimism that that could translate to long COVID.

NIALA: Chelsea Cirruzzo is a reporter for Axios local based in Washington DC. Thanks Chelsea.

CHELSEA: Thank you so much.

NIALA: Thanks to those of you who wrote to me with your stories of living with long COVID – among the many texts and emails I got was one from Julie, who told me her daily walks have become slow and strenuous, when she can do them…and that even drying her hair with a towel can nearly bring her to tears because her arms are in so much pain. [beat] We’ll put resources in our show notes - including new reporting from Chelsea, Tina, and the rest of the health team.

In a moment: surprise visits to Ukraine from the U.S. First Lady and the Canadian Prime Minister.

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NIALA: Welcome back to Axios Today. I'm Niala Boodhoo. First lady Jill Biden made a surprise Mother's Day visit to Ukraine yesterday to meet with Ukrainian first lady Olena Zelenska, who had not appeared in public since the Russian invasion began. A video from the Washington Post shows Ukraine's first lady thanking Dr. Biden through an interpreter for the quote “courageous act.”

INTERPRETER: Because we understand what it takes for the U.S. first lady to come here during a war, where the military actions are taking place every day, where the air sirens are happening every day, and even today.

NIALA: Canadian Prime Minister Justin Trudeau also made an unannounced visit to the country to reopen the Canadian embassy in Kyiv, something President Biden is also considering. What do these moves tell us about the Western calculus as this war continues? Here with the latest is Zach Basu.

Zach, these surprise visits happened ahead of Victory Day in Russia, which is today. What message do these visits this weekend send to Putin?

ZACH BASU: Yeah, so these surprise visits were part of this real flurry of activity by the Western allies surrounding Victory in Europe Day, which was on Sunday, but is celebrated in Russia today with a massive military parade in the Red Square in Moscow. And the signal that the west is sending with these visits, with new sanctions, is that they're not going to let Russia use propaganda to hijack the meaning of this holiday and rewrite history. The Kremlin loves to call the Ukrainians Nazis and casts this war as a continuation of the Soviet campaign against fascism, but the reality that the west wants to convey is that Russia is the aggressor here. And that the U.S. and Europe are going to continue to support Ukraine until the very end.

NIALA: We mentioned Prime Minister Trudeau announced the reopening of the Canadian embassy and the possibility of President Biden doing the same. What's the risk assessment of having these back in Kyiv?

ZACH: We now know that the State Department is accelerating its plans to reopen the embassy permanently. And what a senior State Department official told us is that they view this as a testament to Ukraine's incredible performance on the battlefield. The risk to Kyiv is still there but as we know, Russian forces were forced to, to retreat after being defeated there. The Biden administration wants to show Ukraine that the U.S. is ready to stick by their side for the long haul. And one of the ways they want to do that is by reopening the embassy.

NIALA: Another way they want to do that is with sanctions. And we saw the latest round of sanctions from the U.S. also action from G7 leaders and the EU. Can you share what this latest round of sanctions is, and how much further Western allies hope this will tighten the screw against Russia?

ZACH: One of the ways this new package of sanctions is different is that the U.S. and U.K. are now targeting the services sector. So, you know, in addition to banning the import of Russian oil and the export of goods and products that Russia needs to power its economy, American and British consultants and accountants will be banned from working with any Russian companies. It's really a new type of sanction that we haven't seen before. And then on the broader question of sanctions, you know, I do think they're having a pretty devastating effect, even if Putin and Russian media do a good job of hiding that. The reality is that it really is having quite a devastating effect on the ground.

NIALA: Zach Basu is part of Axios’ politics team. Thanks, Zach.

ZACH: Thank you.

NIALA: That’s it for us today! You can always Text me your feedback and story ideas: I’m at (202) 918-4893.

I’m Niala Boodhoo - thanks for listening - stay safe and we’ll see you back here tomorrow morning.