Medication Denied. Many Things Questioned.
Medication Denied. Many Things Questioned.
January 12, 2023, 10:18 pm
Filed under: American, economics, Healthcare | Tags: American, disability, doctors, health insurance, Healthcare, medicaid, medical system, medication, migraine, refill, strict policy
A week before my scheduled appointment with the woman who was to be my new neurologist, I found out that she explicitly refused to refill my migraine meds. I’d been having trouble getting the refill for weeks and finally got word that it was intentional. This medication significantly reduces the numbers of migraines I get and is a key component to my maintaining a decent quality of life. Refusing my access to it was essentially guaranteeing me pain, suffering, loss of work, loss of pleasure, loss of comfort. It is an incredibly cruel choice for a doctor to make. A migraine specialist (which this doctor is) should know that and she either doesn’t know that (which is troubling) or she doesn’t care (also extremely troubling).
This experience has shaken me in a wide variety of ways. The first way was to give me two entirely avoidable migraines. It would have been more but I took some expired lower doses of my meds, which helped a bit — but then they just fizzled out two to three hours before the next dose so I was having to calculate how much earlier I needed to take the meds each day. Is taking expired medication dangerous? It’s not good, no — but probably not dangerous, just less effective. I googled what to do when you your doctor won’t refill your medication and I got on to GoodRx and managed to get a 90 day supply. So — hot tip if you’re in this position — this is an option. Not a great one — a medication that normally costs me a dollar cost me $30 and was not a long term solution. But I got it in my hot little hand and then I canceled my appointment with the sadist doctor.
This drama is all absolutely ridiculous and pointless, really. And what I’m wrestling with its connection to both economics and disability.
Why did this doctor make this decision?
I was told she had a “strict policy” — but why? My medication is not an opioid or anything that might be abused. It’s one of the most commonly prescribed medications out there. I felt as though I were being punished for needing the medication and also for not coming in to see the doctor before. But this doctor is nearly impossible to get an appointment with. Everyone in the practice is like this. I made the appointment in the summer and the first available appointment was in December. When I canceled with this sadist doc, the next available appointment I could get with someone who took my insurance was, again, six months down the line. If you cannot see patients, having a “strict policy” about seeing patients before refilling their meds is a guaranteed cruel double bind for patients. It feels as though there’s an odd kind of judgment of the patients, a kind of assumption that they are careless and lazy about their health.
I assume this effect is magnified for Medicaid patients like myself. I know doctors don’t make much money from us. That’s why my doctors are always leaving to go do more profitable things. (My last neurologist now runs an on-line migraine clinic where you can have easy access to your doctor for a membership fee of $22 a month plus $150 doctor visits!) Doctors, of course, make judgments about people who use Medicaid insurance. They assume we are dumb, irresponsible and careless of our health because we don’t have much money. They don’t make money from us so they don’t make themselves available for our care and so six months can be the shortest wait you’ll find. With my previous doctor, I’d have to make appointments a year to a year and a half in advance.
I assume there’s also a kind of ableism at play here as well. It’s a kind of tough guy, “migraine won’t kill you” sort of thinking — because technically that’s true — a migraine will not be fatal, at least not directly — but fatality shouldn’t be the only measure for care. I felt an implied sense of “you should be able to be without your medication for a while” — a kind of “you don’t need this” vibe. I have heard almost exactly this from a doctor before. And you know — I would LOVE not to need medication. What I wouldn’t give to make it so. I don’t like that I am entirely dependent on a medicine to have a decent quality of life. But I suffered through quite a few years of absolute misery trying to find something that would help me get back to a kind of normalcy and I feel very lucky to have found something. Not everyone does. To have it arbitrarily taken away because a doctor has a “strict policy” just highlights for me how necessary it is.
In fact, it’s made me realize that I do, in fact, have a disability. I have been in denial about this for some time. I felt like I wanted to be an ally for people with disabilities, but from the outside, you see, not as a person with a disability myself. But a week and a half without my preventative meds and I am out of commission. My medication is not as visible as a wheelchair but it is what allows me to get around and participate in society. It took years of trial and error to find the balance of medications to make this work. I felt like I was on pretty solid ground — until I was denied what I needed. Then I realized how disabled I am and have been. Migraine is an invisible disability and is also the second most disabling disease worldwide. It is incurable and can only be managed. Even with all my medication in place, my migraine tracking app tells me I am severely disabled. I mostly don’t feel myself so — because I’ve found a way to (sort of) manage them — but also, I’m pretty sure, because of ableism, I do not want to be disabled and because my particular disability is invisible, I can get away with pretending I’m not. But this incident with my medication has made me recognize an uncomfortable truth. I have a disability. When I fight for people who have disabilities, I’m fighting from the inside now. You take away our migraine meds; you’re taking away our mobility aids. Things like this are not “Nice to Haves” — they are “Need to Haves.”
As a way to deal with this drama with my doctor, I joined the migraine subreddit just to feel myself among others who might understand what I was going through. I didn’t post anything but I found such a wide array of experiences there. There were so many migraineurs there who have been dismissed, who have been told to toughen up and deal since it’s “ just a headache “ (It’s not, btw, it’s a neurological disease. Sometimes it’s not even a headache.) The community there made me feel lucky, actually, to have access to neurologists, medication and supportive friends and family. Many people have none of these things. The gaps in care, in this country in particular, are quite shocking.
I’m lucky to live in a major city with multiple neurological practices — so when the first one didn’t really work for me, I was able to go to a second. I may have been shuffled among doctors such that I have now seen six neurologists since 2016 but I have also been able to see six neurologists when others may have only one neurologist in the area and they may not have any expertise in migraine. If someone in that sort of situation is denied a refill of their medication by their doctor, they can’t just go see another one, the way I did. (Not that I had a lot of choice, very few of the neurologists at the neurology center take my insurance but still, I had a couple of options, even with my Medicaid limitations.)
Everyone I talked to about this situation that was IN the system seemed shocked that I canceled my appointment with the doc who denied my meds. “You’d have only had to wait another week!” they said. But I felt very clear that I would not receive good care from someone who would make needlessly cruel choices. I also wasn’t sure I’d be able to avoid yelling at her (or worse, not yell at her) and that’s not the way I wanted to meet someone new.
I was not scheduled to see the doctor to whom I switched for another six months, as it was the first available appointment, but when my refill came across her desk, the new doctor had her assistant book me in for a video appointment for the next day so she could go ahead and refill my meds with confidence. It was done so gracefully and with care. She may, in fact, have the same “strict policy” that the first doctor had but rather than make me suffer, she made space to see that my continuity of care wasn’t needlessly disrupted. It was generous and kind and after all the pointless drama, it was exactly what I needed.
The profit motive in healthcare is horrible. We all know it’s horrible. Those who are poor and those who are on things like Medicaid (of which I am one) know it even more acutely. Those who are disabled (again, of which I am one) are also more aware than most of how the healthcare system is constantly devolving due to the profit motive. People are denied life sustaining medications every day — by their doctors or their health insurance. (I have had multiple medications denied multiple times as “not medically necessary” by my health insurance, sometimes after years of use, when they are literally the only thing that work.) The cruelty and immorality of this system is overwhelming to consider. I want to fight it but it’s so commonplace, it feels like fighting the rain. It will fall, over and over again. It feels as though there’s nothing to be done. But our healthcare system is not rain. This a choice we, as a country, have made and continue to make. Other countries prioritize the health of their people. Some do a better job of caring for the most vulnerable than others but at the very least the intention is there to care for everyone.
There are so many advocates for medical justice. I’m only beginning to become aware of them. I’m so grateful for their work. I don’t know how I can help them yet but I do know that the cruelty and ableism built into our current system needs to change.
When I was in the middle of the worst of this mess, I looked up the reviews of the doctor who denied refilling my medication. She had a two out of five star average and one patient had written “This is the worst doctor in NYC.” (Do you know how bad you have to be to be the worst doctor in NYC?! Very bad.) So it’s clear that I made a good decision in switching, for a multitude of reasons and I’m lucky as hell there was another kinder doctor to switch to.
Until the migraine situation kicked in for me in 2016, I had been a very healthy person. I went for years without health insurance because I never needed to go to the doctor. It was easy not to worry about how messed up our medical system was because I didn’t have to deal with it. (Though of course our medical system being so profit driven was the other reason I didn’t have health insurance before the Affordable Care Act so you know…it actually WAS impacting me.) I have to deal with the medical system now. There are those who make it smooth and those who throw needless obstacles in the road. The obstacle throwing ones, like that doc I never met, create suffering, fury, migraines and blog posts like this one. The kind ones simply help us.
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Originally published at http://artiststruggle.wordpress.com on January 13, 2023.
