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Chutes, ladders, phone calls, and tears
Did you ever play Chutes and Ladders as a kid? (In the UK, we called it Snakes and Ladders, a difference that doesn’t make much sense to me; I mean, you guys are the ones with all the snakes.) You roll the dice and, depending on what number you get, you either progress a little bit, get zoomed up way further, or tumble back down, sometimes all the way to the beginning. It’s a lot like American healthcare. Luck—like where you live, whether you were born rich, and how healthy you are—determines whether or not you get easy access to care, or have to trudge the long way to the goal while other people race ahead, or just end up getting nowhere at all.
This is what is happening to me, right now, trying to get Vyepti.
Vyepti is an expensive IV infusion drug that prevents migraines, administered once every three months, and it’s been revolutionary for me. On Vyepti, my life has been significantly better. For a while there, I thought I was pretty much cured. When I started receiving it, I was living in DC, where I went to a very good neurology clinic that provided Vyepti in-house. It was all straightforward. In March, I moved to Los Angeles, which meant buying a new insurance plan, finding a new neurologist, and figuring out how to get Vyepti before it was due on May 9.
This did not happen. It’s May 12, and I still haven’t had my Vyepti. Every effort I’ve made to get it has gotten me no further. Every phone call and email has led nowhere.
Worse still, I don’t know whose fault it is, and it is very frustrating to be extremely mad without knowing exactly who should be the target of your anger. The answer changes with every phone call. It becomes comical. I am wheeling my red face around every minute, directing my fury at someone else, and with each turn losing the righteousness of conviction. “You fucker! Wait, no—YOU fucker! Wait—hold on—”
This is all theoretical, of course. I’m not yelling at anyone, except myself. If I called my insurance company to shout at them about their shitty networks and confusing website, I would be yelling at someone who had absolutely no power over my situation, probably doesn’t even work directly for the company, and makes shit money. Same goes for the clinic. No one is at fault, and everyone is at fault.
I’m going to lay out exactly what I’ve had to do to get absolutely nowhere in getting this drug. If you find it boring, I do apologize—but if you think it’s boring to read, just imagine how boring it was to live. I’m doing this not because it’s therapeutic or because I’m a narcissist, though I am a writer, so both of those things are a little bit true. I’m doing it to demonstrate how much work has to go into getting necessary medical care; how much time and knowledge can be required to get anywhere, or nowhere; how completely fucking stupid this process can be; and how, in the United States, the patient is alone. If they can’t make it over every hurdle, tough. There’s no one else whose job it is to make sure you get the care you need. It’s just you.
Over the past five weeks, I’ve made dozens of phone calls just about this drug. I’ve called my insurance company (Oscar), their prescription benefits manager (CVS Caremark), my new neurologist at UCLA, the Vyepti savings program, and at least five different infusion providers. I’ve sent many emails to my old neurology nurse practitioner in DC, and asked her and her assistants to send three different referrals to different clinics. I still don’t have my Vyepti.
I wrote previously about the process of picking an insurance plan in LA, which meant picking a provider first, since they all covered different doctors. I went with one that allowed me to see doctors at UCLA, whose neurology department had been recommended to me by my previous neurology nurse practitioner. By the time I had an appointment at UCLA, the earliest available was May 11, two days after my Vyepti was due. This meant I had to find an infusion clinic by myself. The whole concept of infusion clinics is kind of strange to me; they make money by buying a lot of different bags of expensive specialty infusion drugs and hooking you up to whichever one your doctor prescribes. It’s a very compartmentalized and complicated way of providing healthcare, one that only makes sense in this consumerized landscape.
I started this process on April 4, not including research for months beforehand. On that day, I emailed my old practice in DC to ask for a referral to a clinic here, MedRX, which I found through cross-referencing the Vyepti website’s list of providers near me and Oscar’s network search tool. I have, through tears, chastised myself for not starting earlier, but this isn’t really fair—I couldn’t do much to get an insurance authorization until I actually had that insurance, which started April 1, a Friday.
I waited two weeks after the first referral to hear back, after calling the clinic a couple times to check. (That extra week I waited, politely but also because I forgot, was my first big mistake.) They never got the referral, so I asked my neurology nurse in DC to fax a referral order instead of submitting it via the website. This time, it worked. A sigh of relief.
A few days later, the nurse’s administrative assistant emailed me saying the prior authorization request had been denied—by CVS Caremark, on behalf of Oscar. (CVS Caremark is a prescription benefits manager or PBM, a type of middleman that manages drug coverage on behalf of insurance plans.) This confused me: Vyepti is usually covered under the medical benefit, not the prescription benefit, since it’s an IV infusion administered by a medical professional. I called the infusion clinic to ask why they submitted it that way, and the guy didn’t know, and asked me to send my insurance card over again. I waited, over a weekend. I called again Monday, and they told me the reason it was submitted under the prescription benefit was because while they were in-network with Oscar for prescription benefits, they weren’t in-network for medical benefits. They were in-network as a pharmacy, not a provider. I had not imagined that this problem could exist.
When you search for this provider on Oscar’s website, MedRX does appear as in-network. It’s up to you, the patient, to notice this:
Under “specialties,” which I think you could reasonably assume isn’t the same thing as “the only services that are in-network,” it’s listed as a pharmacy. I called Oscar to tell them that their website had sent me to a provider that wasn’t in-network, and the customer service agent apologized and found another infusion provider—one called Oso Home Care, in Burbank. After a few calls and trouble finding the referral form—they have two websites, it turns out—I sent my neurology NP in DC another email, asking apologetically for a referral to Oso. She sent one in.
A couple days later, I called back. Bad news: It turned out Oso wasn’t, in fact, in-network for medical benefits, despite what Oscar had told me over the phone and the fact that the Oscar network search lists them as an “Infusion Therapy Center.”
Two weeks before my infusion was due, I was starting to worry.
I called a third provider, CVS Coram, who appeared as in-network both as a pharmacy and as a “home infusion agency” on the Oscar website, and asked an extremely nice person at Oso to fax over my stuff to CVS Coram. After several days and several calls, including one that was automatically routed to the Virginia office because I have a DC area code, it emerged that while CVS Coram was in-network, they didn’t provide Vyepti. (My second big mistake: I should have double-checked the Vyepti site.)
It was now one week before my next infusion was due.
I called Orsini Specialty Pharmacy, which is some sort of official in-home infusion provider for Vyepti. It didn’t appear to be in-network as a provider with Oscar, just as a pharmacy, but I was getting desperate, and I thought I could maybe get the Vyepti copay program to cover most of the cost. They told me it would take at least two weeks to get an appointment, after getting insurance approval and finding a nurse to come to my apartment. No good, I told them—I needed it by May 9. Here was my third big mistake, assuming I could get an appointment quicker than that. It’s like waiting for a bus and deciding not to walk, because it’ll be there in a minute. You end up waiting as long as the walk would have taken; but if you left then, it’d take just as long again, so what are you gonna do?
I went back to Vyepti’s list of providers. I called the Cedars-Sinai Pain Center, which isn’t specifically listed as in-network with Oscar, but I know Cedars-Sinai overall is. No answer. I left a voicemail, which was never returned. The next provider I called was Option Care Health, and to be perfectly honest, I cannot remember at all what happened there. I don’t know if I ever got through to anyone, or why I didn’t end up pursuing them. I just see it there in my list of iPhone recent calls. The cells in my brain that held this information have been replaced with rage.
Onto the next clinic, whose name I’m not going to include because I’m still waiting to see if they can give me the drug. They were listed as a Vyepti provider and listed on Oscar’s website as a “home infusion agency,” not just as a “pharmacy.” I asked how quickly they thought I could get an appointment, and they said it was usually pretty quick. Result. I got my referral sent to them on May 2, a week before my Vyepti was due.
I called again two days later. No update—still waiting for insurance authorization, they said, but it could take up to 72 hours. I called again on Thursday. No update.
I called again on Monday, the day my infusion was supposed to happen (medically speaking). They said it was still listed as ‘pending,’ but the person who answered the phone said he thought he overheard someone saying it actually didn’t require a prior authorization, and I should call my insurance to find out what was going on.
I called Oscar, and they said they had no record of the request. I had been waiting a week for something that apparently didn’t exist.
When I called the infusion provider back, first on Monday and again on Tuesday, they said they would look into it. They called me back, saying they had called Oscar, who said they had gotten a lot of authorization requests that day, so it might still be under review. This doesn’t explain why Oscar has no record of receiving it. It also brings me no closer to understanding who is at fault. My rage is still directionless. I am still waiting. I called again today; no update.
The premise of a market-based healthcare system is that healthcare works like any other business, where everyone is incentivized to provide the best service for the lowest cost, to beat the competition. The infusion clinic is supposed to want to get paid by my insurance, encouraging them to get me in quickly, and get my coverage sorted. Same goes for my doctor. The insurance company is supposed to want to keep my business next open enrollment, motivating them to have a good provider network and cover the drugs I need. No, stop laughing. This is how it’s supposed to work.
Obviously, it doesn’t work like this. Insurance companies and doctors wage war over reimbursements, and if they don’t reach agreement, or if they have a falling out, the patient is out of luck. There’s enough demand for good specialists that they don’t need to take every insurance provider. Oscar doesn’t want me as a customer, a person who will cost them more money than I’ll pay in premiums, if I get my drug. Better to provide me worse care until I leave them and go to the next insurer. The clinic probably has like two staff members to deal with benefits for their entire clientele, with dozens of different insurance plans.
There is no one in any of these positions whose job it is to make sure I am healthy. Clearly, that’s not the job of my insurance company. Even the providers’ job is ultimately to get paid by insurance companies; if I’m made healthy by that, it must be as a by-product of making money. I’m lucky that my kind provider back in DC was willing to spend time filling in forms even though I’m never going to earn them another cent. I don’t think business decisions alone can explain why the clinic was slow to follow up with my insurance; shouldn’t they want my insurance plan’s money? Perhaps they’re overworked, or perhaps they have enough clients that they don’t need to hurry to get in another. Perhaps the very fact that they have to spend so much time dealing with this bullshit makes it harder for them to keep track of people like me.
More to the point: There is no one whose job it is to help me navigate all of this. It is my job to make these dozens of calls. It is my job to search my insurance network’s website, and my job to figure out that the results might not be what they seem, and my job to check and check again. If I get it wrong, or the website is misleading, or someone doesn’t make calls they’re supposed to, or loses my prior authorization form, that’s too bad for me. If I was 10% more of a fuck-up, I would have no hope. I’m spending hours corralling several different businesses to try and take each other’s money (and my own), but none of them seem to care if that doesn’t happen. No one else gets in trouble, and there’s no system set up to make sure it happens if I drop the ball. The irony of me saying this is my “job” is that I am not being paid to do this, and in fact it takes up time and mental energy—both at a premium while I’m suffering from migraines and depression—that I can’t spend on work. I wish I knew who I could bill for the lost hours.
There is a happy-ish postscript to this story. I had an appointment with my new neurologist at UCLA on Wednesday, and she was fantastic. She was kind, and took the time to listen to what I said and what I meant. She wasn’t condescending or patronizing, and listened to what I wanted to do, instead of just telling me what she thought I needed. I got the sense she knew how to get things past insurance companies, and really felt that she was on my side. She said she’s going to find out what UCLA can do about getting my infusions, though I still foolishly hope I’ll get an appointment with the clinic before she gets back to me. But I feel confident going forward that I have someone in my corner for round two.
I have this significant consolation in part because my privilege allowed me to skip up a couple ladders on the way. Most importantly, I can afford private insurance, and the deductible. The insurance I bought is not available on the ACA marketplace and therefore not eligible for income-based subsidies (Substack subsidizes my insurance instead). This insurance, which you have to be able to afford without tax credits, is the only one I could find that was in-network with UCLA except for the famously shitty LA Care plan; it’s true that I had to pick this insurance because of that, but still. I only know that I need Vyepti and that it works so well because I was able to see the neurology team who told me about it in the first place, something that is not true for millions of migraine sufferers. Plenty of other people go to their overworked and disinterested primary care provider, and just get sent home with ibuprofen.
UCLA has a huge, expensive-looking, very profitable medical center, all festooned with banners telling you how good it is. Multiple buildings tower over the entrance to the campus, grand and imposing. (I certainly don’t remember the school’s History department looking that good.) UCLA Health has the second highest net patient service revenue in Los Angeles, almost $3 billion in 2021, after Cedars-Sinai. It can afford not to take most marketplace plans, which happen to cover poorer and sicker people than employer-provided insurance, because it is massive. My nice neurologist expressed her sympathy and frustration that I was struggling and, I believe, getting more migraines without seeing my psychiatrist back in DC, and how hard it will probably be to get me an appointment at the behavioral health clinic at UCLA. While I was paying for parking in Westwood—another privilege—I heard a man on the street having a violent argument with nobody, which is very common if you spend much time listening to your surroundings in this city. There are thousands of people in this city that need urgent healthcare and have no hope of receiving it. They’re not just falling down the chutes; they don’t even make it onto the board.
Yet even with all these advantages—even being a person who writes about healthcare, and has time to spend on the phone—I spent five weeks getting absolutely nowhere. Every part of the healthcare system should be able to agree that I do great on this drug, and trying to get them to just fucking talk to each other is like herding cats. I’m not so privileged that I could bypass the insurance process and just pay the $4500+ to get the drug, which is the Big Ladder that goes right from row one to the end.
I got nowhere by myself, even though I was able to try harder than many might have. I don’t think there are many people out there who could have helped me much, and I don’t really know what I could have done differently, other than try to conference in both Oscar and the clinic at the same time. I made a couple of mistakes, but I don’t think they were egregious enough that it’s really ‘my fault’ this happened. This is just how the system works. It just requires dozens of calls and forms and referrals and waiting and emailing and waiting and calling and waiting and crying, crying, crying, to no avail. It requires patients to be their own advocates and administrative experts while they are sick, because they are sick. It is cold, cruel, and so very lonely.