COVID-19 “Long Haulers”: Our System is Failing Them

Chelsea has had 66 doctor appointments to manage her enduring coronavirus symptoms, which are appearing in almost every system of her body. She discusses the support group that she started to connect people struggling with the physical, mental, logistical, and financial struggles of COVID long haulers. The experience has turned her into a Medicare for All supporter; listen to her reflect on what it looked like to see people struggle with poor or limited healthcare access.

Show Notes

Stephanie and Ben pause to express their outrage at the Democratic Party Platform rejecting Medicare for All by a vote of 125 to 36. This is less support than the same motion received during the 2016 election year, even though a majority of Democratic voters in every single state backed M4A during the primaries.

The Democratic convention is a highly scripted affair, and the vote is a result of Biden refusing to give ground on Medicare for All – even in the face of a pandemic that is making employment-based healthcare a death sentence. The Platform also voted against expanding Medicare to ages 55 and up, as well as even allowing states to implement their own M4A plans. The DNC: a true profile in courage during a national health crisis!

This episode, for Medicare’s 55th Anniversary, we invite our guest Chelsea Alionar, who is a COVID-19 “long hauler” – the term for people suffering from long-term symptoms of COVID-19, who are being completely failed by our healthcare system. Chelsea has suffered from a staggering range of COVID-19 symptoms: migraine headaches, cough, fever, rashes, impacts on her nervous system, lost sense of smell and taste, loss of hearing, tachycardia (rapid heart rate), arrhythmia (heart rhythm problems), insomnia, fatigue during the day, blurry vision, short-term memory… the list goes on. Other people have had GI symptoms and even worse. Living with these long-term symptoms – particularly memory issues and fatigue – has made it extremely challenging to continue working.

Chelsea has had 66 doctor appointments and hospital visits since the start of her symptoms. Fortunately Chelsea works for the Oregon Health Authority as a medical auditor, and has fairly good insurance coverage. In her job, Chelsea pours over medical charts, and understands standards of care that providers are supposed to meet, which makes her as well equipped as possibly anyone to navigate the health system.

However, Chelsea works closely with the “Long Haul Covid Fighters” – an international support group for COVID-19 long haulers and she feels the healthcare system has let down 99% of them. In particular, Chelsea highlights the challenges faced by people who suffer from COVID-19 symptoms, but do not get a positive test (which she refers to as a “golden ticket,” enabling you to get better coverage and care).

20 percent or more of COVID-positive patients receive “false negative” test results – that is, the test fails to detect the coronavirus – even when they are tested multiple times and are symptomatic. Chelsea hears from many long haulers that, without a positive test, you cannot get sick leave from their employer, and you cannot get your care covered by insurers or the government.

Chelsea reports that COVID long-haulers in the South are being hit particularly hard. She has one friend who feels she can’t tell her story about suffering from COVID-19 because her family is Republican, and does not believe in coronavirus. Many other long-haulers also don’t feel comfortable telling their story publicly, because coronavirus has been politicized, and they fear public backlash (as well as backlash from their family).

Does Chelsea support Medicare for All? She didn’t previously, but the pandemic has changed her mind. She has always supported healthcare as a right, but she was concerned about losing the healthcare coverage that she has. Now, she feels that a true Medicare for All system – one comprehensive standard of care, with no cost-barriers, for everyone – that is what she wants. She sees the gap between the healthcare she has, which is fairly good, and those of the people she now works with suffering long-term symptoms of COVID-19.

Happy Medicare’s 55th Anniversary!

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  1. Diane Baker on August 3, 2020 at 12:24 am

    You guys are my kindred spirits! My husband lost his job the end of March due to Covid and we also therefore lost our healthcare coverage. We haven’t had any insurance since then. He found another job, but the insurance doesn’t kick in for 3 months so we are still waiting. I am soooo disappointed in both political parties. I cannot believe that in the middle of a pandemic they are doing nothing to help the millions of uninsured. I am beyond disappointed in both political parties. This is not a Democrat vs. Republican issue. I am a lifelong Republican and a rabid fan of Medicare for All. Healthcare is a human right and shouldn’t be treated as a precious privilege. I live in NC which is one of the states that didn’t expand Medicare so our Obamacare is awfully expensive and doesn’t provide the coverage we need. So like many others we decided not to flush thousands of dollars down the toilet for it. I have emailed Representatives in Congress and signed petitions but what more can I do? How ridiculous is it that we have to beg them to do the right thing? My husband had transplant surgery and we both need insurance now for various checkups but have had to cancel a huge number of appointments. Nobody in Washington cares. They really don’t. Anyway, thanks for your podcast. I send love and best wishes from NC. Keep up the good work.

    • Stephanie Nakajima on August 7, 2020 at 10:33 am

      Hi Diane,

      So sorry to hear that you and your family are uninsured – how stressful must that be when we’re dealing with wave #2 of COVID, not to mention all the routine healthcare needs that will go unmet! I definitely think people are starting to see the limitations of Obamacare.

      We totally agree – this is not a Democrat vs Republican issue. Our job is to bring people of all political stripes into the fight for Medicare for All. That’s the only way we will win.

      Thank you for listening to the podcast :) Best wishes from Boston!