Bad Attitudes: An Uninspiring Podcast About Disability

Episode 35: Oh, the Humira-ty

April 18, 2022 Laura Stinson Season 2 Episode 35
Bad Attitudes: An Uninspiring Podcast About Disability
Episode 35: Oh, the Humira-ty
Show Notes Transcript

CW: Brief graphic description of wounds.

I was diagnosed with psoriasis MONTHS ago and have been going 'round and 'round trying to get my medication. The hoops I had to go through and the red tape I had to cut is documented herein.


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[rock guitar music]

MALE VO [00:03]
This is Bad Attitudes.

[rock guitar music]

LAURA [00:20]

Hello friends and strangers! Welcome to another episode of Bad Attitudes: An Uninspiring Podcast about Disability. I’m your host, Laura.

I’ve spent the last several months going ‘round and ‘round trying to get new medication delivered. It’s finally on its way!

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As always, I want to remind you that disability is not a monolith. My experience as a disabled person is going to be different from the experiences of other disabled people. I am one voice for the disabled community but I am not the only voice.

Back before Christmas, I was diagnosed with psoriasis. I would have been diagnosed sooner, but with the pandemic, it was a challenge to get in to see a dermatologist. And since about January of 2022, I have been struggling to get a prescription filled to treat said psoriasis. 

Getting a prescription for psoriasis isn’t as easy as other prescriptions. The doctor can’t just send the request to the local pharmacy and then you go pick it up in the drive-thru. First, the doctor has to send a pre-authorization request to your insurance company to see if your insurance company will even ALLOW the doctor to prescribe the medication to you.

Surprise, surprise, I was denied.

Turns out, my insurance only covers three possible medications for psoriasis. Humira, Cosentyx, and one other one, the name of which slips my mind. So my dermatologist had to send in a second pre-authorization request, this time for Humira.

Approved! This is when it started to get fun.

At this point, I got a couple of phone calls. First, from my Abbvie Nurse Ambassador. Abbvie is the company that makes Humira and they have this Nurse Ambassador program that assigns you a person who helps you deal with paperwork and red tape (mostly by making sure you have the right phone number for the right people), and answers any questions you have specifically about the medication. My Nurse Ambassador is very nice, but I have talked to her on the phone A LOT and as an introverted millennial, this is not ideal.

The other phone call was from the specialty pharmacy that would be providing the Humira. (Humira has to be shipped to you from the specialty pharmacy. I don’t know why.) I was chatting with the person from the pharmacy and I asked a very important question: How much would I be paying out of pocket?

Over $3,000.

For what kind of supply?

A 35-day supply.

I’d be expected to pay over $3,000 for, essentially, two doses of Humira. Every month. With my social security income, I could cover MAYBE 6 doses a year. IF I don’t have to spend money on literally ANYTHING else.

Thankfully, this pharmacy had an assistance program that would potentially take my out-of-pocket costs down to $5. Sign me up!

After going through the process of applying for this assistance, I learned — through my nurse ambassador and an insurance specialist that works for Abbvie — that I am not eligible for this assistance because I have Medicare part D. So the $3,000-plus is what I would be expected to pay AFTER insurance.

I don’t know, maybe lead with that next time.

Okay, screw that. Abbvie has an assistance program and I can apply for it.

In the middle of this process, I get a call from a DIFFERENT specialty pharmacy that I’ve never heard of. I had known to expect the call from the first pharmacy because my dermatologist’s office told me that that was who would be calling. I reached out to my dermatologist’s office to inquire about this second, unknown pharmacy.

“Oh, yeah, that’s the pharmacy we normally use but your insurance required we use the first pharmacy.”

So, why did you send my info to this other pharmacy in the first place?

Regardless, I got in touch with both pharmacies and told them that I wouldn’t be needing them at this time. The first pharmacy because I would be getting the medicine directly through Abbvie. The second because if I needed a specialty pharmacy I would have to use the first pharmacy. And they both said, “Okay, we’ll put a note on your file that you don’t need us at this time and you’ll contact us if that changes.”

I still got calls from both pharmacies for the next two weeks or so. My voicemail was wall-to-wall pharmacy robocalls. Eventually, thankfully, we all got on the same page and I haven’t received any calls since. Knock on wood.

Finally, I was able to complete the Abbvie assistance application at the beginning of February. There was a little bit of confusion and going back-and-forth as to whose information they needed, if any, in addition to mine. But that’s always the case when you share living space with other people, even if you don’t share bills. Surprisingly, they didn’t even need that much information. I really only had to show them my social security statements in addition to basic info like name and address.

On February 14, I got a notification that the assistance program needed more information but they were getting it from my doctor. According to my nurse ambassador, as soon as they got that info, I would probably be approved pretty quickly.

A week passed. And then two weeks. And nothing changed. The status of the application still indicated that they were waiting on information from the doctor. This was taking way too long.

I talked to my nurse ambassador about it and she connected me with someone from the assistance program. (So MUCH talking on the phone.) Turns out, they were requesting information from the WRONG DOCTOR.

They were sending the request to my primary care physician, not my dermatologist, who prescribed the Humira. They had sent the request multiple times with no response.

Here’s my thing. If you don’t get a response from a doctor’s office after multiple attempts, don’t you think you should maybe reach back out to the patient to confirm you have the correct information?

But I’m not putting all the blame on Abbvie. My doctor’s office, which was getting requests regarding someone who IS a patient there, didn’t do anything either. They didn’t contact me or Abbvie. They just let these requests sit in limbo. If my nurse ambassador wasn’t so proactive about contacting me, or if I wasn’t so interested in getting this medication as quickly as possible, this could have gone on for MONTHS with no one taking any kind of responsibility or action.

Once it got straightened out which doctor Abbvie needed to be sending the request to, it still took another TWO weeks for everything to be approved. I got approval on March 17, as a matter of fact, and I know this because I was in my dermatologist’s office that day and she is the one who told me. And I was in the dermatologist’s office because in the past month, my psoriasis has gone straight to hell.

I’m going to be talking about what I’ve been dealing with these past few weeks with my psoriasis and it might get a little graphic. Not a whole lot, but if you’re squeamish, you might want to skip the next bit.

This has not been concretely confirmed, but I believe I have a type of psoriasis called inverse psoriasis. With inverse psoriasis, the plaques develop in the creases of your skin, like under your arms. I have some areas on the planes of my body, like my back, but primarily my psoriasis is in areas where my skin folds or creases.

Up until the last month, I’ve had annoying but basically mild outbreaks. I’ve had ointment to put on them, and they’ve responded fairly well to that. Sometime in February, I started getting outbreaks under my arms. By the end of February, I don’t know what was happening, but the best way I can describe it is that, under my right arm, my body basically tried to Hulk out from my skin. And I ended up with this massive open tear, wound, I don’t know what to call it, under my arm, near my pectoral muscle. It literally looks like my skin tore open.

Best I can figure is this: My skin was already weakened and on February 26, my sister and I went to a concert at the arena here in our city. Now, moving through this arena isn’t a lot of rolling, relatively speaking, but compared to what I do on a daily basis, it was a LOT of rolling. So, as far as I can tell, my skin was already weakened by the psoriasis and the friction from pushing my chair caused the skin to open.

Predictably, it was extremely painful. As it didn’t seem to be improving, I got an appointment with my dermatologist as soon as I could (not an easy feat). My dermatologist really didn’t know what to make of it either. She injected some cortisone under the skin to promote healing, but it’s still pretty ugly. Really ugly.

What’s worse is that in the last week I’ve developed a rash under my arm, too. Now, this COULD be psoriasis, but I’m not sure it is — or isn’t. All I know is it HURTS. The tear hurts, too, but it’s more like a tightness when I move, pulling the skin in and around the tear. The rash is stinging and/or burning. I described it like getting a tattoo, but 1000 times worse and also the needle is on fire.

As I’m prepping this episode, I’m still a couple days away from my first dose of Humira. I have to go into the dermatologist’s office so they can teach me to do the injection. Although let’s be real, I could probably figure it out on my own using YouTube. But, I do want to go in because I would really like my dermatologist to take another look at my arm and confirm whether or not this rash is really psoriasis. If it is, then there’s not much to be done, probably, but if it’s not, I’m a little afraid of what it could potentially be. My mom floated this idea and I’m hesitant to put it into the universe, but it’s not dissimilar to shingles. Which would just be like, OF COURSE.

Because, believe it or not, I have had shingles before. I had it when I was 23, so dismiss any idea you had that shingles is something old people get. It was a very mild case, but bad enough that as soon as I turn 50, I’ll be getting that vaccine.

Here’s my question: If I didn’t have to jump through so many fucking hoops to get my medication, would I be dealing with this now? Or would I have been taking Humira long enough to have prevented it?

And THANK GOD this isn’t a life or death medication like insulin. Why in God’s name does it cost so fucking much? Over $3000 for a couple of injections? That’s insane. It makes no sense. I can’t wrap my brain around it.

But, then, you think that people are paying that for ONE VIAL of insulin. How do pharmaceutical companies and legislators sleep at night on their big piles of money and the bodies of innocent people? I mean, sure, Scrooge McDuck made diving into a pool of gold coins and swimming around look like tons of fun, but he was a cartoon and a duck. Please don’t tell me you’ve been basing your life on the actions of an animated duck with a Scottish accent.

How can some people with so much power care so little about everyone else? How can they hear story after story of people rationing insulin, people DYING from not being able to afford it, and still, STILL they won’t do anything.

And while I am SUPER grateful for the assistance program that makes it possible for me to get Humira at no cost — because otherwise, I wouldn’t be able to get it at all — how can a company charge so much for a medication, but still offer it for free to certain patients? Obviously, there is some convoluted money-making scheme in the works that I don’t understand but….why can’t we just make medication available to everyone? Why does it have to be so difficult? 

And the thing is, this situation wasn’t even that complicated compared to what some disabled people have to go through to get medical care or any kind of assistance. The amount of proof you have to have to get social security even if the government has already determined you have a TOTAL AND PERMANENT disability is ridiculous. Like, I’m sorry Mr. Government, you say I have a total and permanent disability, but your own word isn’t good enough for you? Make it make sense, that’s all I’m asking.

Like I said, as I’m prepping this episode, I’m still a couple days out from getting my first Humira injection, but by the time it airs, I should have at least a couple in the can. I will give you updates as warranted, but please send all your good vibes, thoughts, and prayers that this will clear my skin up because seriously, y’all, whatever is happening to the skin under my arm hurts like a MOTHER.

Thanks for listening and I’ll ta —

[record scratch]

Ha ha, just kidding. So, here’s the deal: The goings-on under my arm are NOT psoriasis, so I have NOT yet gotten my first Humira shot. Not knowing what was going on, my doctor didn’t want to put me on anything that would suppress my immune system. My doctor looked at my arm and said, “I don’t know what it is, but it’s not psoriasis, because psoriasis doesn’t do that.” She took a biopsy and a bacterial culture, and also referred me to a wound care specialist.

The biopsy and culture results came back. The culture was clear, and the biopsy showed that the tear under my arm is a kind of ulcer. Much to my family’s dismay, I don’t have any more details on the kind of ulcer, but I am currently on antibiotics and prednisone, and at this very moment, the pain in my arm is a lot better, thank GAWD, and things SEEM to be improving. Knock on wood.

I go to the wound care doctor in a few days and back to the dermatologist in a couple of weeks to possibly try again with the Humira and do a follow-up on the ulcer. The stitch they used to close the biopsy site came out of my arm today, which I don’t think that was supposed to happen. I was scheduled to go in next week to get it removed, so I guess that’s one thing I can cross off my list.

That’s what I know for now. If anything major happens, I will keep you posted.

And, for real this time, thanks for listening and I’ll talk to you in the next one.

[rock guitar music]