When Being Disabled Feels Like a Job

I’ve mentioned before that July is Disability Pride Month – in fact, I have another whole post about it. But I want to be upfront about the less positive side of being disabled, too. There are days that I don’t really feel like cheering about my disability pride, because I’m just too beat down and frustrated. Last Friday was one of those days.

A screenshot of a phone call at 3 hours and 26 minutes.

As some of you might remember, I started taking Evrysdi, the SMA treatment, back in April. It was a super exciting milestone for me – even now, I can’t believe that multiple treatments for SMA exist, and that I get to take one of them. While the journey with the medication itself has been a smooth one, the administrative side has been bumpier, and it all came to a head this week.

I’m incredibly, incredibly lucky to be covered by three different insurances. Believe me when I say that I know how much this has helped me, financially, over the years. But very often, doctor’s offices, pharmacies, and other supply companies get very confused over who to bill first, or just forget to bill anyone after my primary insurance. After I got my first shipment of Evrysdi, I realized that this had happened – I will billed for a co-pay, but when I called the specialty pharmacy to clear it up, they said they didn’t have my secondary or tertiary insurance on file. (Even though I had already given it to them. It’s hard to forget reading out the Group ID numbers of three insurance cards over the phone!) So I gave them all of my information again. And then I gave them all of information AGAIN again when they still claimed not to have it.

A few days after I got back from my trip to Myrtle, I realized that I hadn’t received my text to schedule my shipment of Evrysdi for this month (insurance covers a 24 day supply, so I have to call every month to arrange the shipment). When I called the specialty pharmacy to see what was going on, I learned that they had finally billed my secondary insurance, but my doctor’s office was still going through the appeal process with the insurance (pretty standard for a medication like this). And the specialty pharmacy didn’t want to send my next shipment until the issue was resolved – even though this would mean that I’d have to stop taking Evrysdi while things got straightened out.

I was not okay with this, to say the least. Stopping a patient’s medication over a billing issue, especially a billing issue that isn’t the patient’s fault, should never be the answer. In my case, the co-pay was under $100, so it wasn’t anything that couldn’t be submitted after-the-fact to my secondary insurance after we went through the appeal process. I was not willing to just stop taking a medication that I’d been on since April for an under $100 billing issue.

So I spent the equivalent of a full business day between Thursday and Friday making lots and lots of phone calls. I have an absolute gem of a patient access liaison who was on the phone with me through every single step of the process, for which I’m SO grateful (major shoutout to Darcy from Genentech!). We called the specialty pharmacy, we called supervisors, we called my insurances… at one point, we had the pharmacy plus UPMC and Highmark (my primary and secondary insurances) all on the same call, which any Pittsburghers will understand is quite the feat, since they don’t always play nicely together. The very sweet UPMC customer service rep stayed on the phone with us for over two full hours to help things get resolved. We heard so many different reasons and explanations for what was going on (and so much hold music, too).

It was becoming clear that whatever was happening with the insurance billing wasn’t going to be straightened out, so all I was asking was to be allowed to pay the co-pay out of pocket so that the shipment could be scheduled, and then I’d submit to my insurance to be reimbursed. After getting told that I couldn’t do that over and over again, we finally spoke to a higher-up at the pharmacy who said yes, of course I could do that – but at this point it was past 7:30 pm on a Friday evening. I spent another hour on hold while she tried to arrange a shipment, but because it was so late, she wasn’t able to find anyone who could process it. So she’s going to personally pick up the shipment herself and deliver it to my house sometime today so that I don’t have to miss any doses.

By the time I finally hung up on that final call on Friday evening, it was after 9 PM and I’d spent three hours and forty minutes on that one call. I hadn’t eaten or used the bathroom since 2:00 PM. I was exhausted, both physically and emotionally. I had spent the last 48 hours trying connect the dots in a very broken system just to be able to keep taking a medication that I’ve already been on for three months. And while we have a plan in place, the issue still isn’t fixed, and for all I know, I might have to spend more hours on the phone this week to make sure the billing is straightened out for next month’s shipment.

I don’t share this story because I’m looking for pity, or want you to feel bad for me. But I want you to understand the very real time cost involved in having a disability. I had to put my entire life on hold on Friday; figuring out the insurance and billing issues became my one and only job. And this is all just for one medication! It’s especially frustrating because this is all within the healthcare system – a system that, seemingly, should be set up to handle disabilities and other health conditions. So often, though, I find that’s not the case.

So while I’m proud of my life, and of what I’ve learned from my disability, I’m decidedly not proud of how the world, and the healthcare system, treats me sometimes. We have to do better.

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