They don't care about your swollen limbs

Avoidable problems in American healthcare, vol. 348958

Laura Chapman is a law student in Chicago, where she’s studying to become a labor lawyer. She has lymphedema, a condition that causes painful swelling in her foot that worsens throughout the day. She needs custom garments to control that swelling, but her Medicaid plan doesn’t cover them. Here’s her story in her own words, via email:

I've had good healthcare for most of my life. I was born in the UK and lived there until I was four, enjoying the wonderful benefits of the National Health Service. I spent ages four to twenty two on my parent's health insurance. The cost wasn't ever astronomical, it was federally subsidized military insurance and luckily my parents will have it for the rest of their lives. I started my first job out of college and got on my own insurance plan, paying a nice chunk out of the $12 an hour I made directing local news broadcasts. I had co-pays but was lucky to not have any major health issues. 

When I was 26 I left my job in television to go to law school. My law school is the only law school in Chicago that doesn't offer health insurance to its students. They encourage you to go to the Healthcare Exchange Marketplace to find a plan. This wasn't an option for me. I couldn't take a chance on an extremely bad high deductible plan because my main health concern at that time was the possibility of a major allergic reaction that required emergency care. I'm allergic to nuts and peanuts and have had major reactions to them every few years of my life despite my best efforts at keeping away from them. Luckily, Illinois has expanded Medicaid to low income adults, and I qualified. Over the last two years I've enjoyed being able to actually go to the doctor with no copay, no prescription cost, a little taste of what life is like in most of the world. 

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But for the past two years I've dealt with swelling in my right foot and ankle that won't seem to go away. I've done my best at keeping on top of seeing doctors and asking questions and finally got a little bit of an answer a few weeks ago. What I have is likely lymphedema, a disorder of the lymph nodes, that restricts their ability to function properly. If not treated, lymphedema can become extremely debilitating and even life threatening because of the chances of infection. A doctor prescribed me prescription compression garments to wear while I wait for more tests to rule out other possibilities. I received a list of suppliers from the hospital that looked like it had been photocopied 10 times. I called half of them before I found a supplier that would take my Medicaid managed care plan that is offered through Blue Cross Blue Shield.

They quickly let me know that if I needed custom garments that Medicaid would not cover them, they only cover off the rack garments. I figured it wouldn't be a problem because my condition is still in an early stage and an off the rack garment would be fine. When I got to the fitter, an experienced certified lymphedema therapist, she recommended a custom garment immediately to help get the swelling under control and keep it from spreading. My Medicaid plan won't pay for my $450 custom stocking and toe cap. I have a part time job and some savings that I can cover the cost with but it's a huge expense for me. I'm planning on appealing the denial once I get one in writing from BCBS but I feel extremely defeated by the experience. 

I've canvassed for Medicare for All, watched family members die with inadequate care in the US, and seen my family members thrive with NHS care. Because of this I've tried to do everything right and always make sure I have coverage to keep from having expenses like this, but now it looks like I have a disease that will cost me thousands of dollars every year if I want to keep it from progressing. 

I spoke to Laura on the phone last week. She said her Medicaid plan has otherwise been pretty great—her prescriptions and appointments are cheap or free, for example, and she goes to the same hospital she went to when she had private insurance. She doesn’t have trouble getting her Epi-pens, which have an expiration date of 18 months, for nut allergy incidents. Until, of course, this happened.

Her lymphedema therapist said she needed a custom garment because so much of the swelling is in her toes, and an off-the-rack garment wouldn’t do much for her. The breast cancer charity Breastcancer.org says that getting custom garments fitted is very important, since “an improperly fitted sleeve can make lymphedema worse by placing too much or too little pressure on certain areas of the limb — which can cause fluid backup to worsen.” (Lymphedema is particularly common in breast cancer patients.) This makes a lot of intuitive sense; bodies are all different shapes and sizes, and applying the right pressure in the right place to keep fluid moving would probably be a lot more effective if it’s designed to suit your body.

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So why doesn’t her Medicaid plan—another one of those privatized “managed care” plans we talked about last week—cover them? Why would we cover the things that make a condition worse, and not the ones that make a condition better? Private insurance plans often don’t cover the custom garments either, according to a Chicago Tribune piece from 2019. Medicare doesn’t cover compression garments for lymphedema patients at all. That piece also noted that prices are higher for custom garments, but it’s not like we’re talking about an F-35 here; $81 off-the-rack versus $202 custom for an arm sleeve, or $159 versus $906 for a pair of waist-high stockings, and new garments are needed twice a year. A big relative difference, but not a lot in absolute terms. My insurance spends more than that on my migraine medication in a month.

There’s even been a ~bipartisan~ bill for the last seven Congresses that would require Medicare to cover lymphedema compression supplies, but it never goes anywhere, despite being cosponsored by basically everyone in Congress. Roll Call reported last year that (presumably Republican, though the piece wasn’t clear) leadership felt “expanding the definitions for one disease would create a precedent for others,” with former Republican member of Congress Bill Reichert saying: “It boiled down to money and the worry that we would be opening a Pandora’s box for other disease changes.” (Speaking of F-35s, I got a hilarious ad on that Roll Call page for the F/A-18 “Block III Super Hornet,” which costs, I don’t know, six thousand trillion dollars or whatever. Maybe there’s a metaphor there; we opened the Pandora’s box and it turned out to be full of Super Hornets, and now we can’t have healthcare. And the Pandora’s box is America, yeah? Or capitalism, or something?)

In one sense, they’re not wrong about this. It is stupid to legislate one disease at a time, instead of providing comprehensive healthcare to everyone as a standard requirement of being a country. This approach adds to the complicated, ticky-tacky nature of American healthcare, where you have to pore over lists of coverage, exceptions, covered diseases, and so forth to find out whether you get to be alive and well today. But it’s even stupider to not legislate at all and to let people suffer needlessly while they wait for you to pass a single-payer bill that you also don’t want to pass. It’s like the COBRA conundrum: Spending public money on private insurance through extending COBRA coverage was a really inefficient, expensive, and dumb way to provide healthcare, but letting it expire without anything else in place was even worse.

This isn’t really about what’s fair or efficient, though. Laura’s story, and the stories of lymphedema patients like her, is one of the keys to understanding how our leaders see the American healthcare crisis. They would rather people suffer and not do anything about it than do something and have people think they could do something about anything else, too. After all, if people realized how simply so much of this could be solved—how much of the profiteering, penny-pinching bureaucracy that ruins their lives could be destroyed and replaced with something better—they might start asking for that to happen.


A few links:

  • A deeply horrifying story about the appalling state of healthcare in Arizona’s prisons, which is privatized. “They’ve got every incentive to delay treatment or provide more minimal treatment, or to count something as treatment when it’s not really treatment,” Michele Deitch, a University of Texas senior lecturer who studies prison conditions, told The Marshall Project.

  • A “puzzling” lack of attention to the nursing home deaths during Covid, and Andrew Cuomo’s particularly awful record here, is examined at The New York Times.

  • A woman in Georgia was billed $700 just for entering and sitting in an emergency room, which she left without being seen at all. “I called them and she said it's hospital protocol even if you're just walking in and you're not seen. When you type in your social, that's it. You're going to get charged regardless," she told Fox 5 Atlanta. This is only possible because of the absolutely absurd lack of oversight of what hospitals charge patients. I cannot imagine what billing code a hospital could possibly use that would justify them charging you for simply sitting in an emergency room, but how is a patient supposed to know that? If no one is punishing administrators for doing things like that, why wouldn’t they do it? Even when they get caught, they just have to tell the news outlet that they’re looking into it. No one gets fined or goes to jail. American hospitals are engaging in massive criminal fraud all the time, and you’re the one who gets in trouble if you don’t pay your bill.

  • The Texas abortion ban is affecting the availability of abortion services in nearby states, which are being pushed to breaking point, according to Vice.