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Our Health Care System is Broken
I wasn’t planning on turning this newsletter into a weekly update of how I’m doing medically, but that’s where we are for the time being. I thought I’d feel well enough to write about the Yankees and Dodgers and Mets and Cardinals and Orioles and Blue Jays and Padres and Braves and more this week, but amid doctor’s appointments and fighting with my insurance company, caring for my dog, taking slow walks, brushing my teeth, and showering, the only energy I had left was for napping.
I never used to be much of a napper. Now? I sleep from about 9pm to 7 am, then again from 11 am to 3 pm. And I only get up at 3 because Georgie (my dog) has decided he will left me nap for three hours—but he draws the line at four.
Here’s where things stand right now: my cardiologist gave me a seven day sample of a heart medication called Corlanor a week ago to see how I liked it. And oh, I liked it. While I am still exhausted, I feel steady on my feet. The light-headedness and the brain fog and the nausea are gone. On short walks my heart rate no longer spikes to the point where I feel like I might throw up. Corlanor was originally developed to treat heart failure (which I do not have). But after so many people started developing POTS (which I do have) post-Covid, somebody had the bright idea to throw Corlanor at it to see if it helped people with POTS get out of bed. It did.
So, all good, right? I got a diagnosis quickly.
The vomiting stopped.
The spinning stopped
I could remember enough words to do a Wordle puzzle without throwing my phone across the yard in frustration.
I’m no longer at risk for blacking out from my blood pressure dropping like a semi truck off Niagara falls when I stand up, which means I have been able to be alone and I can now drive a car at short distances. I went to the library and checked out two books. All good, right?
Well, here’s the problem. I went to fill my Corlanor script at CVS on Wednesday and they told me my insurance company doesn’t cover it. The out-of-pocket cost for a month’s worth of the drug? $600. I took a deep breath.
A twitter user told me these manufacturer’s really want you to take their drugs, so they offer what’s called a co-pay card—even for those who don’t show dire financial need (read: are homeless). You just have to be paying for a private insurance PPO which I do (to the tune of $700 per month). I applied for the Corlanor co-pay card and was approved. I printed it out and went back to CVS. The lady behind the counter looked at me like I had four heads.
“You need to go through your insurance first for this to work,” she said.
“OK but we just tried to run it through my insurance and they said they don’t cover it,” I said, my face contorting into a sweaty question mark.
“Have your doctor call your insurance company and pre-authorize it and then we can see if they approve it or deny it and we can go from there."
Pre-authorize? Isn’t my doctor prescribing me a heart failure medication in writing a pretty formal authorization that I might need it?
I guess not!
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So after the CVS debacle, I went back to my cardiologist for an echocardiogram on Wednesday, and I told the lady in the office who deals with medication about my Corlanor plight. I asked her if she had any more free samples. She looked in the cabinets and said she did not, with less compassion in her voice than I regularly hear from Starbucks baristas when they tell me they’re out of bacon and gouda breakfast sandwiches. Something about the easy breezy way this heart medication lady told me that she was out of the drug that was keeping me functional in society, and that I was basically fucked, caused me to burst into tears.
I told her what the CVS pharmacist told me, that I needed my doctor to contact my insurance company and pre-authorize the drug. “Oh, of course,” she said. “That will be a $75, and they’ll ring you up at the front.”
Uh, what? It sounded crazy. But I was already in tears and had no energy to ask why on earth any good doctor would further gouge a sick person.
My cardiologist wasn’t in, so the woman who handles the medication told me she would have to wait to ask him if I could go without the meds for a few days or if he would switch me to another (cheaper) med. I must have been crying pretty hard because my mom (who was with me, because she has been driving me everywhere, because I now have a heart condition from Covid-19 that makes me too exhausted to drive and also vulnerable to passing out and hitting my head) decided to go back there and have a word with the medicine lady. My mom was nice to the woman, but didn’t get any further than I did, except that she retained the information listed in the first sentence of this paragraph when I could not because I was crying too hard into my n-95 mask.
A word about crying here. It turns out when you are as sick as you’ve ever been in your life, and you are worried you might not ever be well again, and then you think you are beginning to get your life back, anybody who delivers you a setback—no matter how small—and acts blasé about it, becomes your mortal enemy.
My mortal enemy—who is actually totally nice, by the way, I think— called me later in the afternoon and told me that the doctor does not want me to skip a pill, or switch to another medication. She suggested I go back to CVS and see if I can pay for a week’s worth of pills out of pocket instead of the full month while my doctor and the insurance company fight this out.
The lady at CVS (an actual angel) saw how much I was paying for a week’s worth of pills and looked like she was about to faint. So she pulled up some app called Good RX to comparison shop seven day’s worth of my drug at every local pharmacy. “Well it’s $2.19 cheaper at Costco but that’s 4 miles away so probably not worth the gas,” she said. An angel. And I wasn’t making my mom drive me to Costco anyway because we were both too tired. So I agreed to pay $150 for 14 pills, which will (hopefully!) arrive on a truck at 11 am today because CVS didn’t have them in stock. I’m supposed to take them twice a day and I haven’t had any in 24 hours so I’m a bit loopy as I type this but it needed to be written.
am not a special snowflake. I recognize my privilege. I am able to afford to pay $700 a month for a health care plan, even if it doesn’t cover what the drug I need to function right now. I have a mom who is retired and willing to take care of me and drive me to a sad carnival of medical appointments all over Los Angeles where no doctor validates parking. I don’t have a case of POTS so bad that I’m bedridden. I haven’t been disabled by this scourge for years and years and years. I didn’t die of Covid or wind up on a ventilator. Unlike millions of Americans, I don’t have to choose between medicine and food.
My mental health is hanging by a thread, but I’ve been in therapy so long that I at least have basic tools to survive the day to day (e.g. I know what a panic attack is and how to breathe through it).
I’m writing this post because it’s absolutely INSANE that a sick person in the richest country in the world has to jump through all these hoops to get life altering (and in millions of cases) life-saving medications because our health care system is so broken. We are the only first-world country that does this to its citizens. A twitter user from LA who helped me get diagnosed with POTS because his wife developed it post—Covid actually moved to Australia (she’s Australian) because their medical bills in the states would have bankrupt them here. She’s on Corlanor. It costs $39 a month there. My good friend from Belgium figured that if she got the medication there (60 euros) and used miles to fly round trip to LA to give it to me, I would save $440. I may wind up having to get my drug from Canada, where it is also $60 a month.
This price gouging is especially brutal given the recent windfall my insurance company, Anthem, enjoyed. It reported $1 billion in profits in the fourth quarter of 2021, largely due to so many people signing up for coverage during the pandemic. It would stand to reason that millions of people now need extra medical care they did not require before due to the fact that we are in year three of a global pandemic. Anyhem could certainly afford to give me heart medication for a condition caused by that pandemic for free. I pay them $8,400 a year for insurance so that I can access medicine and care when I need it. Well, I need it. It’s the least they can do.
In 2021, Anthem CEO Gail K. Boudreaux was paid $19,348,241. I’m guessing she does not have issues obtaining medication she needs, when she needs it. I bet she can get Corlanor for free, because rich people always get free stuff. The average Anthem employee, however, might be out of luck if they need this drug. Anthem’s median employee salary is just $51,000 a year, which doesn’t buy a lot of gasoline to drive around town comparison shopping a $600 bottle of heart medication her company won’t cover.
People who love me are telling me not to take on this fight right now while I’m still so sick, and that instead I should just focus on getting better. That’s a fair point. But I have to put my anger somewhere and I owed you guys an update anyway. Plus if I’m not going to use the platform I have to bring attention to how broken our health care system is, then what’s the point of having any platform at all?
If you are interested in reading about the government’s massive failure in researching the effects of long covid and what a catastrophic burden it will put on all our systems, Zeynep Tufecki has an excellent substack post here. And she also wrote a wonderful NYT Opinion post yesterday here:
But solving this puzzle could be revolutionary, unlocking the door to understanding many conditions that cause much human suffering.
The 1971 National Cancer Act changed the way scientists deal with disease, pouring money into prevention, detection and research.
Scientists battling debilitating, chronic conditions like long Covid and other postviral conditions deserve this sort of commitment in leadership, funding and recruitment to get the best minds in the fight.
We need a National Institute for Postviral Conditions, similar to the National Cancer Institute, to oversee and integrate research. Neither academia — prone to silos and drawn to work that leads to notable publications, which can leave important questions underexplored — nor the private sector — focused on profits — is up to the task alone.
With such an initiative, we could honestly tell so many looking for answers that help is on the way.
I really hope we do pour billions of dollars into studying our collective health post-Covid. But as with everything else related to this virus, something tells me that the people who never even bothered to acknowledge that Covid-19 was anything more than the flu are driving public policy decisions now, too bored with the disease to keep talking about it, and too callous to give a shit about the millions who died and the millions more who are and will become disabled because of it.
I hope I’m wrong.