In less than two weeks, I will be boarding a plane with my husband and my terrified cat to move to Los Angeles. I have dreamed about living in LA for years, so I am very excited about all of it. Well, almost all of it. One particular aspect is giving me enough stress that I’ve occasionally had the thought “ugh, we should have just stayed here”: Picking a health insurance plan.
As I wrote recently, I’m currently experiencing an unprecedentedly low number of migraines, fewer than I’ve had since I was 15. I go weeks without a major migraine. I drink coffee and alcohol, and take ill-advised naps; even my menstrual migraines are much milder. I can’t be sure that my body hasn’t just changed—this is a thing that can happen with migraine patients—but I am pretty confident that getting infusions of Vyepti, an expensive new-ish migraine drug, is also helping a lot. This is wonderful, but it also means I’m very dependent on this treatment. If I can’t get it for any reason, I might go back to living half my life under a migraine cloud.
This means my task in choosing a new plan on the California health insurance exchange isn’t just a matter of filling out a form and picking the best plan I can afford. I need to be sure I can keep getting this life-changing medication—but there’s simply no way I can know that. There is a particular kind of frustration that comes from knowing exactly what I need from the healthcare system, down to the dose of the drug and the date I need to receive it, and yet having so much trouble navigating the administrative waters I need to cross to get there. I can see the Vyepti House on the other side of the lake, but I can’t figure out how to get past the crocodiles.
Picking an insurance plan when you know very little about healthcare is baffling and overwhelming; picking an insurance plan when you know something or even a lot about healthcare is also baffling and overwhelming. It’s like recognizing the type of gun that you’re being threatened with, and then being shot with it anyway.
In making this decision, there is simply no amount of information I could access that would reassure me I’m doing it right. For example, I do not have the power to Behold an Orb and gaze through time, to discover whether I will get hit by a bus or be diagnosed with an even more expensive illness. But I also don’t know whether I’ll like the doctors in my network, and there’s very little I can do to figure out beforehand which one will be best for me. I can read Yelp or HealthGrades reviews, knowing that the same factors that make online reviews of restaurants so useless can affect these: You really don’t know which party is the prick, because pricks never think they’re the one being a prick. I can ask around the migraine community, but everyone’s migraines and care needs are very different. And I have almost no way of knowing whether the doctor will be as reliable about things like filing prior authorizations and sending prescriptions as my current provider.
Migraine care is particularly difficult, partly because there aren’t enough migraine specialists, and partly because it’s a disease that requires the provider to really listen to and believe the patient. There’s no blood test or scan that can prove I get migraines. My doctors have to trust that I’m getting as many as I say, that they’re as severe as they are, that they impact my life as much as they do. Then there’s the migraine doctors who frown at you about “medication overuse,” who blame you for having so many migraines that you need to take a lot of medication to deal with them, or the ones who suggest yoga and diet changes. Those things might be fine suggestions that work for other people, but after 16 years of frequent migraines and subsequently discovering the only thing that has worked for me, I have zero patience for anyone asking me if I have tried cutting out pepperoni. All I need is a very expensive prescription drug that comes in a bag. Give me the damn bag.
So it was a huge relief when my wonderful neurology nurse practitioner in DC recommended a specific clinic to me: the UCLA Goldberg Migraine Clinic. This was instantly appealing to me because, like Medstar Georgetown, it’s attached to a university—which doesn’t necessarily mean it’s any less aggressively profiteering, but does give me more confidence that I’m not going to end up in the strip mall office of a Dr. Nick Riviera type, or someone who wants me to try meditation before I get my sweet, sweet drugs. (Also, I spent a year at UCLA during undergrad, and go Bruins.)
But once I searched the Covered California exchange, which allows you to see whether doctors are in-network with your plan options, my decision became a lot more difficult. The only exchange plan accepted at UCLA is the LA Care plan, which is one of the few public option plans in the United States. I’m frankly interested in trying that out for journalistic purposes, but I also know it’s going to come with a more limited network outside of UCLA. Doctors prefer to take insurance that pays them a lot; plans that cover poorer people tend to pay less, and that’s what LA Care exists to do. It also doesn’t cover Vyepti, so I would need to request a coverage exception. If they decide not to cover it, I am stuck with a plan that doesn’t cover many doctors.
This, it turns out, is true of all the plans I looked at. None of them include Vyepti on their formularies. At least I can assign that one to the “we’ll figure that out later” pile.
It was time to look at alternatives, so I searched the Covered California exchange for plans that cover various migraine doctors in LA, based on the American Migraine Foundation’s search tool. There are 35 AMF-certified doctors listed within 25 miles of my new zip code, but many of them are dentists who are orofacial pain specialists, or researchers who don’t seem to be practicing, or all working within the same center that doesn’t take any of these insurance plans. A lot are working at pain management centers, which isn’t really what I want, but I will consider it.
Most of the plans cover either none of the doctors I searched for, or just one of them. I wasn’t surprised to learn this: A large majority of ACA plans have a “narrow network.” This essentially means I have to pick my doctor before I pick my plan, before I have even met them. Seeing a good migraine doctor is the single most important factor influencing my decision, but it’s not the only thing that matters. I also want to be able to see good primary care providers near me; ideally, I’d want a PPO so I can see specialists without going through my PCP, but that looks likely to be out of reach. I’m also buying coverage for my husband, who will be employed part-time on a temporary basis. Luckily, he is in very good health, but I have to consider his needs too. Of course, cost matters too, but the $300 a month subsidy that I get from Substack means paying for a higher-premium plan with a low or no deductible is more feasible and sensible. (Our income is too high to qualify for any government subsidies, but not high enough that paying any of these premiums will be trivial.) I would like a plan that covers a psychiatrist in-network but haha. Haha. No.
Most of the plans that are less than $1000 a month and have a deductible of less than $7400 are HMOs, which would mean I’d have to get an appointment with a primary care provider before I can see the neurologist. The cheapest plan that is not an HMO is an “EPO” from Oscar, at $806 per month for the two of us. An EPO, or “exclusive provider organization,” is something between an HMO and a PPO; it’s easier to see doctors, but not too easy. It’s cheaper because they pay nothing for out-of-network care, so it’s especially bad if you, like me, are still figuring out which doctors you want to see. UCLA isn’t in-network with Oscar, so I’d have to make sure I found a different doctor that does take it. If I decided I didn’t like the doctor I saw, I would have to wait until January to switch to a different insurance plan. To get a Gold PPO, with no deductible and a big stack of doctors, we would have to pay Blue California $1138 a month. I shan’t be doing that.
There’s also the Blue California Gold Trio 80 HMO plan, at just $675 a month. One of the doctors I thought about seeing is in-network there, according to her website but not the Covered California website. (I called her office to check, and they do take it.) When I search ZocDoc for primary care, they list approximately eight million different Blue California plans, but not the Blue California Gold Trio 80 HMO plan. You can find other Trio plans, and other Gold plans, and other HMO plans, but not that one. Another “figure that out later” thing, I think.
Then there’s Kaiser, for $760 a month, also an HMO plan. Kaiser Permanente plans work differently than most, because you can only see doctors in the Kaiser system. I can find two migraine specialists at Kaiser. One of them is in Downey, 25 miles away. The other is very close to my new place, but her bio says she will “emphasize healthy lifestyle habits for the treatment of migraines, and use migraine-specific headache treatments, that avoid opioids, bultabital and medication overuse.” I know she will probably still prescribe Vyepti if she hears it works well for me, but it doesn’t make me feel confident that she’s not going to yell at me because I eat chips a lot. A helpful person on Twitter said she is very hard to get appointments with, too, which matters a lot more.
Underneath all this exhausting decision-making, the clock is ticking. My last Vyepti infusion was on February 9, which means I’ll be due for my next one around May 9. That gives me exactly two months from the day we land in LA to find a primary care provider, get an appointment, get them to refer me to a neurologist, get an appointment with them, get the prior authorization approved, and then set up another appointment for Vyepti. All of this to ensure an insurance company pays for the drug I need—though I’ll still have to pay hundreds in premiums, co-pays, coinsurance, and maybe deductibles. I don’t know what will happen if I don’t get my next Vyepti; maybe I’ll be fine, or maybe I’ll have a roaring migraine the whole time. If I wanted to pay out of pocket, it would be $4500 per treatment. (Provided I could get the prescription in the first place, of course.)
If it came to that, I could sign up for the Vyepti co-pay program. This is one of the many programs that drug companies set up to help patients afford the drugs that they decide to make so expensive, and that many policymakers have decided are the true cause of high drug prices. (I talked about this in my last subscriber-only post.) That’s why the Trump administration, and subsequently the Biden administration, allowed insurers not to count spending by these programs towards a patient’s deductible, putting the patient on the hook for higher costs. This is supposed to lower drug prices by encouraging patients to choose lower-cost generic alternatives. Sure, let me just go ahead and—oh, whoops! There is no alternative to Vyepti. It is literally the only CGRP infusion drug and I am simply the unlucky asshole whose migraines were basically cured on it. How stupid of me. Either way, it would only cover one treatment: The annual max is $4000.
So, these are my choices. (All the prices are for a Gold plan covering me and my husband.)
Pick the LA Care plan, which is cheaper and covers UCLA, but I would overall have fewer choices of other doctors. $646 a month. ($346 after my Substack subsidy; pretty damn cheap.)
Pick the Oscar EPO plan, which covers at least one other doctor I’ve heard is good and wouldn’t require a referral, but covers nothing out of network. This would make it harder to get reimbursed for psychiatry appointments. $800 a month. ($500 a month after the subsidy: Not cheap.)
Pick the Blue Shield Gold 80 HMO Trio Extra Mondo Doritos Locos Tacos plan, which covers one of the doctors I’ve heard is good, but no one else. $675 a month. ($375 a month after the subsidy: A relative bargain.)
Pick the Kaiser plan, where I have an extremely limited choice of migraine doctors, and I already know one of them is hard to get appointments with. $760 a month. ($460 a month after the subsidy: Not bad, not cheap.)
There are a couple other insurance plans on there, like HealthNet or Anthem, but none of them seem any better than these options.
What would you do? Don’t say “move back to England,” you smartass: Vyepti is not available there.
Whatever choice I make feels scary. I have no real way of making a ‘good’ choice; I have a lot of ways of making a bad choice. Even if I make the best available decision, I could get screwed if the plan rejects my request to cover Vyepti, or if the doctor turns out to be an asshole.
In the end, my best hope is that my husband finds a job that provides insurance, and this is the real problem: Employer-provided insurance is not all good, but almost all good insurance is employer-provided. If you have a decently generous plan that covers a wide range of doctors and all of your care needs, you probably get your insurance through an employer, and your employer is probably paying a lot for it. The average employer-provided family plan is $22,221 per year, or $1768 a month; for single coverage, it’s $7739 a year, or $644 a month. Employer-provided coverage is the country’s largest tax break, which disproportionately benefits high-income households.
The way we distribute healthcare costs in this country is very stupid. It would be dumb just for its inefficiency and complexity, but it’s worse than that: The decision to pay for healthcare through these class-stratified systems makes it hard for sick people to access care. People who are employed full-time in high-income jobs—that is, the people least likely to be very sick—have the best access to care, because they are least likely to be sick. People who have lower income jobs may have insurance, but worse insurance that is harder to use. People who have to get their insurance through the exchange have to figure out a lot of stupid shit to get subsidies, and many of them can only afford plans that don’t really cover stuff anyway. People who are on Medicaid face long wait times and limited networks. People who are uninsured are just shit out of luck.
I’m stressed out about all this, but in the end, I’ll figure out how to get my Vyepti. My job is flexible enough that I can spend hours figuring this stuff out, calling doctors’ offices, chasing up referrals and prescriptions, driving to appointments far away, and whatever else I need to do. I don’t have enough money to pay $4500 every three months, but I have enough that I could swallow paying for a more expensive plan each month. But it shouldn’t come to this, for me or anyone. Access to doctors and treatments simply should not be determined by how much money you have, or what kind of job you have, or whether you’re good at making decisions about insurance plans.
I will get my migraine juice bag, whatever it takes. I just shouldn’t have to jump over so many crocodiles to get it.
All of these insurance woes resonate with me, and you're right, there is no right answer. My perspective is as a nurse, working for a large health system, paying to be insured by my employer. Fun fact: they require a $50 spousal surcharge *per pay period* to cover my spouse (because he is offered coverage by his employer). This means that the only way OUT of that surcharge would be for him to not qualify for benefits from his employer (change jobs or work fewer hours). So I pay extra to cover my family (my per-paycheck premium) PLUS this spousal surcharge. AND I WORK IN THE INDUSTRY. Shouldn't I get a frequent flyer discount for working here AND seeking care within the system? Which leads me to my next fun fact!
My employer's insurance plan changes every few years. In the past there were three options: PPO, EPO, or HMO. Now there are two: PPO or Preferred PPO. I don't remember the nuances of each, but they now provide the highest coverage for in-system care (nothing is covered 100% and there's a deductible, of course). Like, if this was Kaiser, they cover the most if I ONLY see Kaiser providers. I work for a great health system filled with providers I trust, thankfully. But I also find this a little unnerving. Where is the line between where I work and where I seek care? What if I had a sensitive medical problem? Would I hesitate to seek care knowing my employer was also (to a limited extent) in-the-know about my diagnosis and treatment? Now I have to pay a lot of money every paycheck for the privilege of seeking care from my employer. What a racket! Which leads me to my final fun fact!
There are all kinds of add-ons with our benefits enrollment each year. I can add Cancer Insurance (you know, in case I know every Fall that I'm going to have cancer the following year), Long Term Care insurance (because nobody can afford good care in the long run), vision, dental, orthodontia, etc. What I'm saying is, my expensive family plan *is just the basic coverage*. The economy model, if you will. We all got raises and bonuses during the pandemic (I'm sure the government footed the bill), and I'm grateful for the recognition. But they're taking it back in the form of health insurance premiums and surcharges (thank goodness we don't smoke or that could be an EXTRA $45 surcharge, per person, per paycheck). And my paycheck comes every 2 weeks....
It's a dumb stupid mess because of private health insurance and profitable Healthcare (even though my system is technically non-profit, which feels... nonsensical). All we can do is open wide and eat up, and hope we don't have a medical problem that bankrupts us in the future.
Thank you for sharing your health insurance journey. It's a tough one to navigate! And that's not a bug, it's a feature. 😂😭