Seriously how are Americans still alive?

Every day I learn of a new horror of the American healthcare system

Do the right thing buddy.

“I’m not really sure if this qualifies as a Hell World thing or not,” a man named Chris Holley wrote to me. People are often hesitant when they tell me what their deal is to suggest that the way they are personally getting screwed over is all that bad because they know how much worse others might have it and no one wants to seem like an asshole but it’s not a competition we can all be afforded our own individual measure of distress.

Holley is a software engineer in San Diego and his almost two year old son was diagnosed this past summer with an extremely rare genetic syndrome called cri-du-chat which translates to cry of the cat. It’s called that because of the high-pitched cry that infants who have it make and it can lead to a number of intellectual and developmental disabilities.

Holley and his wife are in a pretty good position financially and family support-wise compared to millions of others around the country he told me which means that while all they’ve had to go through in terms of paperwork and phone calls and fighting through the byzantine insurance gauntlet to make sure their son is getting the care he needs has been exhausting and almost akin to a second full time job it hasn’t been anywhere as bad as it might be for a family who is in a more precarious position.

How lucky they feel to have not been completely crushed.

“We live in California, so he would not qualify for Medi-Cal (Medicaid) because of our family income. But because of the severity of his diagnosis he was granted a waiver,” he told me. “This was a multi-month process meeting with social security, producing every document you can think of, bank statements, tax returns, pay stubs, car registration, etc. The whole time we have been paying for his health insurance out of pocket, around $500 a month.”

“He was finally approved in December which was great as he needed surgery at the time to [insert a feeding tube] that likely would have cost us thousands out of pocket. We were told that we would be reimbursed for all of the premiums and copays for the time between diagnosis and approval, but now it’s like the whole process starts over. Now someone else needs every document that you could imagine. It feels like this whole process is designed to keep you from getting the services you need and then to keep you from getting anything back from the months that everything is pending.”

I spoke with him on the phone about what it’s been like trying to navigate the healthcare system and how much of a nightmare it can be even when you are doing relatively well compared to many others and why the experience has reinforced his belief that Medicare For All is the only solution and you can read it below but first some other stuff.

I fucked up my foot somehow last week running so now I’ve unlocked a new body part pain level achievement which is cool. I saw a post the other day that was like “As you get older and things on your body start breaking, it doesn't seem fair that the body still has enough energy to generate pain or as much pain. The pain should be weaker, like everything else” and that is about how I feel about things. I woke up the other morning feeling like I somehow broke my foot while I was sleeping and that shouldn’t be possible and yet the human body, ahhh, she is, how do you say...real fucking bad and dumb. But I managed to trudge sort of sideways down to the Boston Common yesterday to see a fella by the name of Bernie.

“Today we say in the cradle of American democracy that we will not let this country become an autocracy,” he said and we all yelled there were a lot of us there something like 13,000 of us all harassing each other and saying slurs about women. I saw one person say on Twitter that the crowd was underwhelming and I was like what and I looked up their account and they are both a Hillary and Pete supporter.

In case it's not clear you could scarcely find a more expensive place in all of New England to have a window to look out of and the idea of a Pete voter doing so and frowning at the peasant rally below is very funny to me.

Here’s a cool video my pal Jed took that shows the scope of the crowd.

Then this dude Bernie said to me and my thousands of racist and sexist friends the following:

As I may have mentioned once or twice in here the rich people on your TV don’t like hearing that type of shit.

I have no idea what if anything is going to happen here regarding the coronavirus but I’m not worried because I’m sure the proper authorities and Mr. Trump have it all under control.

Check this cool shit out. Alex Azar is the Secretary of Health and Human Services and before that he was a pharmaceutical lobbyist and the vice president of Eli Lilly & Co.

I saw a couple of experts they had on the news to explain the virus to people and a common refrain was that if you suspect you may be experiencing the symptoms that you should call your doctor and I thought lol what. 

I posted that tweet above and it went sort of viral with hundreds of people chiming in to talk about how absurd the concept of even having a doctor never mind one who you could call is. You can go through and read all the replies on the tweet if you like but I thought I’d make it easier by collecting some of them here. 

  • I don't have a doctor. I have an urgent care clinic I can sit in for 5 hours coughing till I see a nurse practitioner who tells me to go home and drink fluids.

  • I haven’t had a “my doctor” since I was last able to qualify under my mother's workplace insurance so that would be some 15+ years ago. Frankly the idea of having a doctor you regularly see is an alien concept at this point.

  • If you can't get the dr on the phone, just take a helicopter to your family's wing at the local hospital.

  • I adore my PCP but do we ever speak on the phone? Lolz no. It’s either make an appointment or have what would amount to a 3-minute call take 5 hours because we must only communicate via the nurse and she sometimes can’t answer my questions and has to get back to me.

  • Might as well use a toy phone lol.

  • This is why I just love it when people are like “we can't have medicare for all because other countries have to wait forever to see a doctor!” I had to wait 6 months last time I wanted to see my PCP for insomnia and when I did her literal words were “I don't know. Try chamomile.”

  • My last doctor was my pediatrician soooo....dial them up or is that weird?

  • “My” doctor? Not sure I've ever seen the same doctor twice in a row.

A lot of people talked about tele-health or something like you can get on a video call with a doctor now I guess and that reminded me of this robotic hog shit from a Hell World from last year.

  • Please, I couldn’t get my doctors on the phone when I was miscarrying, when I had a staph infection, when I had a bad reaction to medications...what the hell good is calling about coronavirus gonna do?

  • The idea that all of us have a doctor… I haven’t had a doctor since I had a paediatrician. Like, hi, no healthcare means no doctor and the last time I went was for a job physical to make sure I wasn’t taking drugs.

  • For most of us it’s “call your nurse line and get referred to an emergency room.”  Having a doctor you can call seems like a fucking myth.

  • When I went into urgent care for bronchitis, the nurse practitioner told me “after you finish the round of antibiotics, follow up with your PCP.” 

    “You.... you *are* my PCP.”

  • I’ve been to my doctor’s office 4 times in the last year and have not seen my doctor. I think he might have died and the staff is covering it up.

  • I can ask the ornery front desk lady to take a note to give to my doctor’s technician’s scheduling assistant. They can call me back tomorrow to let me know if the note was written or not.

  • The last time I tried to call my doctor, I was transferred to three different people, eventually had to leave a message, and she didn’t call me back. She’s nice in an appointment but the woman does not have time to talk on the phone.

  • lol I have to leave a message with the front office who will leave a message with the nurse who will leave a message with my doctor who will tell my nurse to call me back 3 days later.

  • Your pcp is just a random name you pick off your insurer’s website to list on your application, not a real person right?

  • I have “good” insurance and every time I try the list of doctors that insurance covers, I'm told they already have too many patients and I can schedule a well visit for a month out. Twice I've been bumped. I haven’t had a PCP since my pediatrician. We need #MedicareForAll

  • Scheduled an appointment once that was actually very serious and it was a year wait LMAOOOO talk to my doctor......

  • Laughing because I have never spoken to LET ALONE met my doctor. I have one and they just send me nurses when I make appts. This shit is COMICAL.

  • I can't even call the office with the system in my area. All calls are routed to a central call center, out of area, that can ONLY make appointments or collect bills.  You literally can't talk to anyone.

  • Thank you for calling but the first available appointment is November 13th, 2024.

  • Lol people have doctors?

  • Have literally never met my primary care doc, have always seen a nurse prac when I've gone (and they are wonderful and helpful for everything I need! but still).

  • lmao I haven’t been to a real doctor in AT LEAST 5 years. I just see a nurse practitioner & a surgeon at my gyno, which I pay for largely out of pocket since they are out of network & I’ve changed insurance so many times…

  • I can email my doctor through an app owned by a shady company that I’m pretty sure steals my data and they’ll get back to me maybe in a week. If they don’t get back to me, a receptionist will tell me to make an appointment.

  • It took me a WEEK to get my kids’ pediatrician on the phone to discuss a significant issue my child was having and I was happy when I got to have a 5-minute, real conversation with her about it. That shows you where the bar is in our healthcare: I was HAPPY with that result.

  • I don’t even know who my doctor is.

  • I once called my primary doctor 15 times over three days because my ear infection had gotten so bad my eardrums had ruptured to release fluid. No one called me back. My husband once called about some hemorrhaging. They scheduled an appointment for 8 months later.

  • lol I can't even see my doctor with a regular appointment gotta get that a month in advance so basically if I have any issue that needs seeing then I go to urgent care and hope they can help.

  • I have some of the best employer-provided private insurance in the US, and I could never get my Dr on the phone. I can call their office and talk to staff/advice nurse, but getting an appt for even a routine annual exam has taken 3 months’ wait. They’d tell me to go to an ER.

  • I can message my doctor through a secure internet site. At any point, I can get charged money for doing this. (Up to the full cost of an office visit). I cannot send images or voice. This is considered rather good compared to other clinics.

  • I haven't had an answer to “who's your doctor?” since Bill Clinton was president.

  • Our pediatrician recently started charging an annual fee for people who want to just call the office with questions, like that's premium doctoring or something.

  • My former PCP (very sweaty weirdo who always talked about his divorce) once offered me his “concierge service” in which for $50/month I was able to call him.

  • Literally just to send an IM to my doctor on their stupid website costs 40 dollars.

  • And is your doctor a doctor? Mine is a Nurse Practitioner. And she's great, but I have no proof that the doctor on my insurance card even exists.

And as always there were the people from other countries aghast at how fucked our healthcare system is.

From Japan:

  • I am always confused reading things like this. Kinda makes me happy to live where I live. Going to see a doctor when I need one, or even calling them, is like a normal thing here.

From Peru:

  • I’m 9 days into being treated for a serious medical situation in Peru and I’ve been telling the doctors what it was like in the USA and there’s a nurse who worked for a bit in the States and she’s had to back me up and confirm I’m not lying. 

From the UK:

  • Every time I see an American talk about their health service I'm reminded how much we take ours for granted.

  • US medicine is wild. My doctor lets patients dial in for advice every day at 11am, and I think at 3pm. The various practice GPs take turns to cover the phone for that period.

From Jamaica:

  • Wait what? Bro, I have my doctor's personal and office numbers [and] their personal and office emails.

From Ireland:

  • Seriously how are Americans still alive? Every day I learn of a new horror of the American healthcare system.

From Slovakia:

  • Everyday I learn something new and terrible about America

From Mexico:

  • I was today years old when I found out that the gringos struggle even to call their private doctors. [I’m] shocked.

From Canada:

  • I could realistically call and see my doctor in Toronto today. But also tyranny and Venezuela and postmodernist Marxism and death panels and no freedom so joke’s on me really.

From Italy:

  • So you guys can't even talk to your doctor on the phone in America? I know there are a lot of uninsured people. I just thought that once you have an insurance, it works pretty much as it does in most of Europe. But it doesn't seem so. Where do people get this conviction that your health care system is the best???

Ok here’s my chat with Chris Holley about trying to get his son covered.

Tell me about what happened with your son.

He was born in July of 2018, about a month premature. Nothing scary or anything, totally normal delivery and stuff. It was a rough first year. It was hard to get him to eat from the bottle, then later any sort of solid food. The pediatrician we were seeing kept going he’s fine, he’ll catch up. That’s what we wanted to hear. But right before his first birthday my wife decided to take him to see her primary care physician, and she said she thought something was wrong. The thing he has is called cri-du-chat. The defining characteristic pretty much every kid who has it shares is they sound like a kitten. It’s super rare though so none of the doctors or nurses he’d ever been around thought anything of it other than oh, he has such a cute cry. So that started the whole road down seeing a geneticist. We told him this is what we think it is and he said “You guys need to stop consulting Doctor Google.”

That’s what he said?

Yeah. He said they’d do all the tests but he’d be shocked if it was this. And it was.

You said you and your wife are in a decent position insurance-wise?

Yeah, I’m a software engineer, she’s an occupational therapist, so it was doable for us. We’d decided when he was born and he was premature a little bit, we just ended up buying insurance ourselves for him through an insurance broker to make sure we had the best coverage possible. About $500 a month got us coverage through Kaiser.

Did they try to scrape you for more because he was premature?

No there wasn’t anything crazy like that. What was considered a top-tier plan was $500 a month, but still every time we take him to anything, our copay is $30, and he’s going to five or six things a week sometimes. Occupational therapy, physical therapy, speech therapy. He’s seeing his doctor. He only has one kidney so he’s seeing the kidney doctor, urologists. All these appointments. So on top of the premium we’re spending another few hundred dollars a month.

It adds up I’m sure. So you weren’t going to qualify for Medi-Cal, but you did?

They offer some sort of I think it’s called a “compassionate exemption”, so because of his diagnoses, and he’s never going to “get better”, they wave the requirement of taking your income into account. But they make you fail the application first, even when they tell you all of this.

How did you know that was an option?

I’m not sure where my wife first heard it. There’s a very active community of parents of children who have this helping each other navigate the system. So they still made us go through this whole thing where they needed every pay stub, your car insurance and registration, receipts for the rent you pay and all of these things, just to tell us we don’t qualify. Then we can apply for this compassionate exception.

This took months of doing basically a fake application?

That’s how it felt. We started this in July and it was finally approved in the middle of December.

In the meantime you’re still paying out of pocket?

As we’re waiting and jumping through all these hoops they’re telling us we’ll get reimbursed for everything once it goes through, but it’s not happening in any sort of timeframe that’s helpful.

What’s the process there to apply to get the money back?

It’s like doing the whole thing again, your car registration, an itemized bill or statement of all the services, which Kaiser contracts out with so many different things. They pay for his PT but they’re not the one providing it, so you have to track down bills from all these different places. It feels crazy. Like there’s always one more piece of paperwork they need before they can do anything for you.

You feel like the process is designed to discourage you?

Yeah it feels like they make it so hard to do that you just give up. It’s possible to get reimbursed for this, but it’s going to eat up so much of your time that you’ll just give up, because really, who has time? Me and my wife were talking last night and she said look at my phone, I made thirty phone calls yesterday trying to figure this out.

It’s like a second job trying to manage the healthcare of your child.

For sure. We’re very fortunate. My wife works in the medical field, she’s an occupational therapist, and her parents own an adult daycare health facility… She works for them there so she has an extremely flexible work situation, where she is able to spend… It almost is a full time job every week trying to stay on top of all this stuff.

Can you imagine how much worse it would be for a poorer family?

I can’t even imagine how a family who didn’t have that flexibility and couldn’t afford to pay those premiums and copays out of pocket would survive. It seems outrageous.

Even so you’re basically fighting for the wellbeing of your baby, it’s kind of fucking insulting that you have to do so much paperwork to ensure your child stays alive.

It’s crazy. Why are there so many hoops to jump through to get the care they’re telling us he’s entitled to? It seems like they’re hoping you just won’t and figure it out on your own.

They’re hoping you’ll just go fuck yourself.

Yeah pretty much. We live in San Diego which is probably one of the higher costs of living in the whole country. They tell you because of his disability he can start collecting social security now. So we went through that whole process, probably over a hundred hours on the phone and paperwork and in-person meetings and other things so they can pay $121 a month.

It’s Kafkaquese. Are you a Bernie supporter? Do you think this would all be easier to manage under a Medicare for All situation?

Oh yeah, for sure. I feel like it would have to be, right? If every American citizens just had healthcare, that was a thing that you had, and you weren’t dealing with do you qualify for it or not, it feels like it would be a non-issue. He would just be covered because that’s how the system works, and that would just be it. There wouldn’t be any of this to go through. He would just be entitled to the same coverage that any other person would.

We’d all have the same coverage, and your son might need to go to the doctor more than say my hypothetical child, but that’s fine because he happens to need it more at the time. When it comes around to someone else’s turn then they will avail themselves of the services.

Right. The whole thing that seems to happen from the other side, the tax fear, is so dumb. A person who’s like I don’t want Medicare for All because it’s going to raise my taxes, even if you’re a healthy person you’re still paying a couple thousand dollars a year for your health insurance. Maybe you’re paying a little more in taxes but you’re going to pay way less for your healthcare. And way less if something were to happen to you.

My wife and I pay like $500 a month, we get it through her job, she’s a teacher, so that’s like… $6,000 a year we pay just to be involved in the game, to even sit at the table. Then there’s a $100 copay here, a couple hundred there to see a specialist. We’re paying like $10,000 before we even get to use any insurance. Are there members of your family who aren’t for Medicare for All?

Yeah, my mom’s parents are old and Catholic and stuff. There’s a sort of hypocrisy in a lot of people. My grandparents, when my mom and her siblings were young, were not financially in a good place, but did become so later in life. So then they became very conservative. When my mom was a kid, my mom’s younger brother had a slew of health things because my grandma had the German measles when she was pregnant, so he has like some intellectual disabilities and he’s deaf. So when he was growing up they had to utilize a lot of government help for his education, but now that he’s an adult and they have money, now it’s all different. Now it doesn’t affect her, so paying more taxes is the thing that’s upsetting.

It’s crazy that people can lose their empathy. I’m sure they’re nice people, I’m not trying to say fuck your grandmother or whatever, but… So how much time have you guys put into this altogether?

It’s probably hundreds of hours at this point. I have a little flexibility but not as much as my wife. I’m still going to a job during the day, which is the time these places are open to talk to them. So what does a person do? What does a single parent do if you have to work during the day? When do you call these government agencies that are open 8-12 and then 1-4:30 or something?

Especially an hourly worker who can’t use the phone, maybe you get a fifteen minute break.

And you’re sitting on hold for two hours to talk to a person, who then tells you this is the wrong thing, you need to call this other place.

It’s fucked. So how is your son doing now?

He’s good. My wife is an incredible advocate for him, making sure he gets what he needs no matter how hard it is. He just has a lot of developmental things. He’s nineteen months old now. He says “mama.” That’s the one word he’s got. But he can’t even sit up on his own yet. He has struggles with eating. That’s why it got to the point where he needed to have a feeding tube put in. That was right after he’d gotten approved for Medi-Cal. So that was a surgery, plus he was having a hard time even tolerating the tube feedings, so we were in the hospital for a week. That would’ve been thousands of dollars out of pocket, even with the good insurance.

Thanks for sharing your story. What’s the boy’s name?

Eliot. Eliot with one t.