Thread by @agorensek

Getting my biologic: a thread. Buckle up, it’s a long one, with the backstory for context. #spoonie #healthcare #autoimmunedisease #RheumTwitter #rheumatology #spooniechat #invisiblepain #chronicillnessawareness #autoimmune

I have a condition called ankylosing spondylitis (AS), which is an autoimmune inflammatory arthritis that mainly affects the spine, but can spread to other joints as well. In other words, my body thinks that my joints are the enemy…

...so my immune system attacks them, causing inflammation and pain. This sounds bad, and it is, but what’s worse is over time this inflammation can erode your joints.

For 2 years (2016-2018) I knew I had an autoimmune disease but I didn’t know what it was. As is common in many people with autoimmune conditions, all the tests that could help me get a diagnosis came back negative. My doctors moved on and treated what they could.

So while I was taking methotrexate to treat inflammation in my wrists, knees, and feet, inflammation was slowly eating away at the cartilage in my right hip.

We figured out I had AS in February 2018 when after an x-ray showed that I had no more cartilage left in my right hip, my rheumatologist decided to x-ray my SI joints in my lower spine just to be thorough.

Unsurprisingly, there was inflammation, which was the key to diagnosing me with AS. Small-molecule drugs like Methotrexate are not enough to treat spine inflammation, so I needed a biologic, or protein-based drug, called Humira, which I would start after my hip replacement

In June 2018, at the age of 28, I had a total hip replacement. In September 2018, I started Humira. And remarkably, it helped the inflammation go away, and x-rays taken by my orthopedist at follow-up appointments showed that my hips had stabilized.

I’d need at least two more right hip replacements in my lifetime, but hopefully I wouldn’t need to get the left one replaced any time soon

You might think the story stops there, and I fervently wish it did, but it doesn’t.

It turns out that Humira is very, very expensive. The cost of two Humira pens in the US is currently $4089.36. I take 2 of these per month, bringing my total medication cost, from Humira alone, to $8178.72 per month, or $98,144.64/year.

Fortunately, my insurance picks most of this up. But because the medicine is so expensive, my health insurance company uses a specialty pharmacy to fill the medication.

Why is Humira so expensive? Humira is a biologic, which means it is a protein-based drug. Specifically, it is a monoclonal antibody that attacks another protein in my immune system, TNF-alpha, which turns off the inflammation, but also unfortunately suppresses my immune system.

Whereas methotrexate is a small drug that can be made synthetically by chemists in a lab, an antibody protein must first be made by another organism in the lab—frequently E. Coli or Chinese Hamster Ovary (CHO) cell lines in large quantities.

Scientists then go through the process of extracting pure antibody from these cells—or removing all of the other proteins, nucleic acids and other parts of the cell from the antibody so you only have the antibody.

On an industrial scale, this is an expensive process. But it doesn’t stop there. Once the antibody is isolated, it has to be kept cold, and frequently has other molecules added to keep it stable even at this temperature.

Antibodies are complicated proteins that once they are thawed to room temperature, they can’t be put back in the fridge.

Why? Because if you move a protein from warm back to cold, or also from the fridge to the freezer, the antibody will fold back up in the wrong shape. And if the antibody is in the wrong shape, it can’t do its job of attacking the TNF-alpha protein!

Many drugs are powders that are ground into pills and can sit in a jar for a year at room temp, no problem. But Humira and other antibody-based biologic drugs are liquids instead of solid, and must be stored at a very specific temperature range in the fridge.

Because this medication is so finicky—and so expensive for insurers—a process called a prior authorization is required. Through this process, your physician fills out a form explaining why you need this medication and the proper dosage.

Then, the insurance decides whether or not to approve the medication, and if it’s approved, they send it off to the specialty pharmacy to fill and send to your home.

What could go wrong?

I have been taking Humira for 3 years, and the process of getting my medication initiated has never been easy. I have gone weeks, even months, without my medication because the system is so complicated and convoluted.

There was the time that I switched onto my husband’s insurance plan, and even though I had the same specialty pharmacy, I still had to get a new prior authorization.

There was the time I decided to switch from a syringe to a pen, and that took weeks to process. At each point, I had health insurance, Rx insurance, and a specialty pharmacy.

The only way I was able to figure out who to call (I could call one company, talk to 3 people and get 3 different answers) was with the support of my husband, a health actuary, who specializes in health plans.

Prior authorizations expire every year, even if you are on a medication for the long haul (or until your body develops a resistance to it). So, I have to deal with this mess at least once per year.

Let’s not forget the time where, after being on Humira for 2 years, my insurance decided to reject my new prior authorization request because, wait for it, my physician didn’t write a justification that exactly matched the approved list of symptoms...

...even though that same company had been issuing me Humira before the old prior authorization expired.

At this point, you begin to wonder if the companies’ goal really is to provide me with my life-preserving medication, or if it is to get me to give up and stop calling. After all, if I go without my medication, it saves my insurance some significant $$$.

But the time that really takes the cake is what I am currently wading through. Remember: I have been on Humira for 3 years and have managed this process under 3 different insurance providers. I should have this down, right?

On 07/30/2021, I called my specialty pharmacy to schedule my next delivery. I see I have 0 refills in my healthcare portal, which worried me. I have 2 weeks’ of medicine left and I want to initiate the process of having my Rx filled and deliver so I don’t miss a dose.

I talk to the patient care representative, and they assure me that I actually have 7 refills, we schedule the delivery for 08/09/21. Good deal!

08/09/2021 comes and goes—no Humira on my doorstep. On 08/11/2021 I start to worry, and I call the specialty pharmacy to ask what’s going on. Apparently, my prior authorization for Humira expired on 07/13/2021, so my insurance rejected my pharmacy’s request to fill my medication.

Nowhere on my healthcare portal for either companies can I see my prior authorization, so I have no idea this would happen. I guess I should have known (?) but I’m super frustrated because a pharmacy associate scheduled this delivery on 7/30, it was denied, and I was not notified

The representative I talked to this time flags my account as urgent, and I call my rheumatologists’ office and request a new prior authorization.

Now it’s Friday 08/13/2021, and I haven’t heard anything. I call my pharmacy to see what’s up, and crickets. Nothing from my rheumatologist. Ryan, my husband, is on the phone with me this time.

We ask if there’s any way I can be notified about the prior authorization expiration to avoid this again next year.

The answer: no, not unless you specifically ask the patient care representative the expiration date of your prior authorization. When it goes through, I have to put the expiration date on my personal calendar so I can back-time my request.

On 08/16/2021, I call my rheumatologist for a status update. They’ve called in the prior auth after mine and the pharmacy’s calls. They’ve done their part.

So, I call the insurance. 3 Transfers later, I get a confirmation that my prior authorization is approved. I call the pharmacy to schedule my shipment. It looks like everything is good to go… except the system will not let the representative complete the transaction.

Two hours later, I get an automated message from the pharmacy to my phone that there’s a problem and they have requested extra information from my doctor.

Frustrated, I called the pharmacy back and learned that, apparently, one prior authorization isn’t enough. Apparently I have two prior authorizations—a PA for the medicine itself and a PLA for the dosing—and they don’t have the PLA for how much medicine I actually need.

So, I called my rheumatologist for the second time today and explain—the person I’m working with has never heard of this, and, I haven’t either, but sends the information to my rheumatologist anyway.

I then decide to call my insurance again and chatted with someone from the pharmacy department. After 30 minutes of holding, I learned that the standard dosing of Humira for my insurance is 2 pens/mo. I need 4 pens/mo.

So, the reason I need two prior authorizations, is I need a prior authorization to approve the first 2 pens/mo, ad then I need a second prior authorization to approve a dosage over the plan limit. Even though I had the same dose all last year!

I explain that I have missed a dose and am set to miss my dose this week, too. The pharmacy rep reassures me that I should be able to get 2 pens up front, and then the rest later when the PLA prior auth comes through. He transfers me to my pharmacy to approve the order.

Except, I talk to the pharmacy representative at my specialty pharmacy, and apparently this is *actually* a no-go. If she requests that I get a monthly dose of 2 pens, when they try to request my 4/mo, it will get rejected as being too early to re-fill.

Good news though: someone from my rheumatologists’ office has called the pharmacy and asked exactly what is needed.

So, I called back my doctor’s office later to check in—the paperwork has been filed and sent to the prior authorization department and all I can do is… wait.

The next day (8/17/21), I decide to call my health insurance and see if the PLA has gone through, bc why not? I get a very empathetic person who understands my frustration, but patiently explains that I don’t need a PLA, what I need is another PA.

I shouldn’t be talking to my specialty pharmacy, the insurance handles the prior authorizations and the pharmacy just dispenses. She explains to me the difference between a PA and a PLA, and it goes over my head.

That night, Ryan finally decides that it makes sense for him to get on the calls with me as backup. We decide to call my insurance and my doctor’s office the next morning (8/18/21)

First we call the insurance, and once we finally get through, the person is not on the line, but we hear kids and conversations in the background for about 3 minutes. I’m not gonna judge because Covid and childcare, but #awk and we hang up and decide to try the doctor again.

The person on the nurse line understands—apparently their office has been flooded with similar requests for second quantity prior authorizations. It’s not just me—it’s really only started happening this week.

After I explain I am about to miss a second dose, she flags my case, and leaves a message for the prior auth nurse who will call me back. By the end of the day, there’s no callback.

So, the next day (8/19/21, it’s Thursday at this point, and this saga started the previous Wednesday) Ryan and I call the insurance, explain our situation, and the insurance person re-explains what I’ve already heard 5-10 times at this point...

...and then basically tells me that my doctor needs to be more proactive. But, he does explain that some doctors write multi-year prior-authorizations. I file this away.

We call my doctor’s office, the nurse line finally has pity on me and puts me through directly to the prior authorization nurse. We share our mutual frustrations about the process, and the prior authorization nurse explains that the pharmacy will take care of everything.

That’s who she has been communicating with, and that I should stop calling the insurance company. She says she’ll call the pharmacy and update me.

Sure enough, within 30 minutes I get a call from my specialty pharmacy, and the prior authorization nurse has called and everything is in place. I can get my dose scheduled for delivery tomorrow—and it goes through!

3 hours later I’m in my new faculty orientation, and I get a call from an Orlando number that I got yesterday. I screen it, because I don’t know anyone in Orlando. They call back though, immediately, so I decide to pick up.

I walk out of the room, take the call, and it’s someone from my specialty pharmacy explaining that my meds have been denied because my doctor needs to send a PLA.

At this point I almost scream with frustration, but take a deep breath, calmly explain my earlier conversation with the pharmacy and the nurse, and that I have already scheduled my delivery. I hold my breath, because this wouldn’t be the first time my delivery is canceled.

The person realizes they overlooked the note on my account, apologizes, and we part ways. I go back to my meeting and confirm late that evening that my Humira will be over-nighted to me, in time so I don’t miss a second dose. Phew!

have a lot of frustrations about this situation. About how I wasn’t notified when my prior authorization ran out, and that there’s no way to check on my status other than calling and asking.

That I can’t *see* that paperwork myself and have to rely on third parties to get things done. That I heard different answers from different people at different organizations.

That there wasn’t good communication on what was needed between my insurance and my specialty pharmacy, even though my insurance OWNS my specialty pharmacy. As soon as I thought I knew what was going on, there was another person waiting to tell me I had it *all wrong.*

All this time, my health is hanging in the balance. If I flare, it’s really hard to get it to stop, and I usually need the help of prednisone. So, when I go without my medicine, I have to make sure to modify my behavior so I don’t upset my body and set off a flare in my joints.

All of this could have been avoided if these three entities—my insurance, pharmacy, and doctor’s office—communicated smoothly with themselves and with me. Why do I have to devote hours of my life to advocating for my health when this should be someone else’s job?

You may be wondering why I have decided to share this information. This is not something I take lightly, and it’s something I reveal from a place of privilege as a white cis-het woman in a two-income relationship, and as someone who is no longer in a visiting academic position.

This revelation is not for me or my sake. I am a protein chemist, so I know when things go wrong (e.g. when the fridge froze my Humira in November).

As a white woman, my physicians are responsive to my pain and requests for medication, whether it’s a Humira refill or prednisone to get me through a particularly bad flare.

My husband specializes in health benefits, and his insurance that covers me is top of the line. I am in, literally, the best case scenario here. I acknowledge my privilege and that I am lucky to have this coverage.

And yet, after all of this, I still have to fight every year to get my Humira. I counted, and I spent just over 4 hours on the phone alone just in the past week—calling 3 different offices, sitting on hold, trying to direct each player to the correct action.

What happens to the elderly who don’t have a handle on the internet, or the ins and outs of modern insurance? What about people who can’t take time away from their job to sit on the phone during business hours? Or those who spend their time caring for family members?

You shouldn’t have to have platinum insurance or an in-house benefits specialist to get your medicine. This process should be so much more efficient to get everyone the care they need.

If I stay silent about my experience, I allow it to continue and deprive others of the medicine and care that they need. Our insurance companies, pharmacies and healthcare providers need to do better for their patients!

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