Navigating Ubrelvy Access Barriers

A deep pink silky fabric background with flowers arranged around a piece of paper where “step therapy is a bitch” is written is cursive

Ubrelvy remains for me one of the most effective migraine medications to hit the market, and I truly thank god that it did.

Ubrelvy was approved about a year after I’d gone through and tried most commonly available medication options for migraine. I’d been on disability for nearing two years at the point and was in a pretty poor place when it came to my relationship with abortive medications. Before Ubrelvy I had rotated between a side effect heavy barbiturate, which isn’t really appropriate for migraine treatment anymore, and a now discontinued medication named Midrin which lost it’s FDA approval because it lacked effective proof it worked.

Since triptans never provided relief for me, my doctors didn’t bother entertaining them.

We added DHE Nasal Spray to my toolkit because I had read a lot about having some stronger interventions on hand that could be used instead of going to the emergency room.

I was essentially in a space where the meds I did have access to created more side effects than relief and cost an absolute fortune. In 2019, I decided to discontinue abortive use because although the options were their my quality of life was mostly made worse by their use.

As the development of Ubrelvy gained more attention and trials were going well, I finally felt as if something was on the horizon that wouldn’t hold the same risks as the abortives I did have access to and more importantly the risks that were of highest concern within the existing CGRP group of medicines. I remained skeptical that Ubrelvy would work because I’d had such a bad reaction to Aimovig, but the short half life gave me a way to try it out at a low risk.

I was given samples to try it out, liked it enough, and my doctor went through a fairly seamless process over a good month or so getting paperwork submitted to my insurance to have the prior authorization submitted and approved.

If you want to go back and read my experience with Ubrelvy I won’t get into all the details, but you can do so here.

I was fortunate in that my doctor requested a lifetime prior authorization so I never have to go through that approval again, and my initial script was covered by my insurance in what’s considered the non-formulary medication at the top cost. This meant that I could receive this medicine that costs thousands of dollars for just $60 every three months.

Up until last October I never had any qualms about my Ubrelvy prescription and despite it being the most expensive medicine, that’s just a cost of being sick.

However, I learned last October about a secondary prior authorization form that my insurance offers called a “Medical Necessity Form” which doctors can submit to insurance with the appeal that the non-formulary medication is the preferred treatment option as it is the only viable treatment for a patient. I came across this while beginning the process of acquiring Qulipta, which also fell in the highest tier. Through a decent amount of harassing of nurses, they were able to submit that form for me for Qulipta and I received an after the fact reimbursement for half of my copay.

At that point in time, I had decided to wait to talk to my doctor about the application of the form with Ubrelvy because although my Headache Specialist was really nice and very informed on treatments, the paperwork side of things were horrible and more than one thing at a time would never feasibly be accomplished.

So in January at a follow up appointment, I sent over the Medical Necessity Form for Ubrelvy along with some questions, and we went over how I wanted to try and get this medicine at a lower cost. This year, the prescription copay costs also all went up, making my highest medication nearly $70.

Determining Medical Necessity happens on a case by case basis and more preferred medications are listed that the doctor must explain why these aren’t options for you.

For Ubrelvy, I had to answer for the five major triptans and Nurtec which is the preferred CGRP abortive therapy. I had taken at this point four of the five triptans, failing each and had failed Nurtec.

In the appointment one of my main questions was regarding my now higher heart rate/blood pressure issue that is managed by medication being a reason that triptans shouldn’t be used. My doctor didn’t actually have a good answer for that other than that the medication I’m on to manage the condition doesn’t interact with triptans.

I had filled out the form and sent it to them as a guide for calling and verbally giving the form to my insurance – which I regularly insist on due to it being the fastest way to get notified of approval and because my Headache Specialist’s office has failed multiple times in submitting forms to my insurance digitally.

By February, I hadn’t heard anything from my insurance and began a back and forth with my doctors office and insurance trying to locate this prior authorization form. Once I discovered it had been faxed, I knew it could be sitting in a pile and would take longer – or the more likely scenario that it was faxed into oblivion. By the beginning of March I was still waiting for the faxed form to be input by my insurance and was growing increasingly frustrated with my doctor’s office for not having followed my instructions for phoning it in.

Come April I had to have a follow up with my Headache Specialist for an unrelated what do you mean you didn’t put any refills on the daily medicine I’ve been taking for almost 5 years issue. I decided at this appointment I would bring up the absolute failure of the Ubrelvy Medical Necessity form. I insisted that they mail me a copy of the completed medical necessity form.

When it arrived in the mail… that is when I discovered that there “completed form” was just my form.

My form had minor notes like “failed, side effects” or “failed, worsened migraines” along with my question notes like “are triptans safe to take” which was for my doctor’s guidance…

That of course is wildly inappropriate and my notes did not at all convey for each medicine a clinical explanation for why I couldn’t take it. It also left various lines blank indicating the med had no reason not to be taken.

I had to give them a call once again expressing my extreme frustration at the form not even being bothered to be filled out correctly.

This led to quite the back and forth between me and my doctor’s assistant. With all of the information I provided, in attempting to follow up on if my properly filled out Medical Necessity Form had been submitted, I eventually was given a run around that my Ubrelvy already had an approved Prior Authorization on file and none of this was necessary. Which turned into perhaps my 3rd educational attempt on explaining what a Medical Necessity Form was, how it was a secondary prior authorization that would grant me the medication at a lower cost, and at this point I was rationing my medication due to cost.

This was the end of April.

By early May, I once again ended up in a desperately pathetic phone call with my doctor’s assistant. I once again requested an update. This time, I broke down on the phone requesting the proper form be mailed to me again so I could simply submit it myself and told her the only reason I had to go through this backwards process was because their office refused to follow my instructions and give the form verbally to my insurance which would give us an instant answer.

Finally, she took pity on me.

Now, my insurance is an absolute nightmare on the phone and can take multiple hours to find someone who you can push around to even allow you to give said forms verbally – despite them telling customers that this is an option doctors just have to ask for. Everyone sucks. But that’s healthcare.

And my doctor’s assistant spent the full afternoon going through hell to request it to finally land on an email portal for submission. She submitted it, my insurance finally received the paperwork.

I wasn’t thrilled that it went as an email submission because that prolonged approval, but I could see on my pharmacy website that the process had finally begun ~ 5 months after I asked.

Because I had not tried Naratriptan, my initial request for Medical Necessity was denied. But, denials come with the opportunity for appeals, and this would be an easy one.

Completing My Step Therapy For Ubrelvy

That’s all this really was, was another form of step therapy. Despite having Ubrelvy and knowing it works and still being able to order more at the higher cost, if I wanted it at the lower cost I had to fully show my insurance I had failed everything else.

I met with my Headache Specialist mid-May to request the Naratriptan and go over the steps on how we would manage the appeal once I knew my results for Naratriptan. Easy peasy lemon squeezy. He said I could send a message over as soon as I tried it and he’d start the appeal process.

Just before the holiday weekend, I trialed my first dose of Naratriptan. Now, I always have minor hope for any medicine I’ve never tried just because it cost $6 and wouldn’t that be the cats ass if I could have a medicine so cheap work for me!

Previous triptans had varying effects on me. Rizatriptan didn’t do anything. Zomig and Sumatriptan both made my migraine worse.

I went to bed feeling off. Heaviness in my chest. But maybe the triptan was working. Until after an hour I realized my breathing was constricted.

Anaphylactic shock in the middle of the night was absolutely NOT what I wanted out of a drug needed for some silly step therapy and I am just grateful my insurance has 24/7 nursing lines and that the Benadryl kicked in immediately and reversed the throat closing up that was happening.

I sent a note off to my doctor as instructed with the (rather unfortunate) results and knew that I couldn’t follow up for a bit since that was Memorial Day weekend.

Since the appeal had to be submitted via mail I expected I would have my answer from insurance by the end of June if not earlier.

A week into June, I gave the office a call to get confirmation that the appeal had been mailed off successfully. The doctor’s assistant had no record of my message to the doctor – she also didn’t have access to his personal messages – so she decided to be perfectly safe she’d send me a secure email link to resend my information and details about the appeal. I included that I would like a copy of this appeal to be mailed to me as well, solely as a way I could guarantee completion.

Over a two week span at the end of June and early July, I began calling relentlessly asking for an update since nothing had arrived in the mail for me. Many times I was told the prior authorization department would give me a call back with an update.

They never called and at the start of July I quit. I began searching for a new doctor while keeping my appointment at the end of the month to discuss with my former Headache Specialist why I was being forced to leave his practice.

The end of July rolled around as did the expiration of my appeal window for the Medical Necessity Form.

Come mid-September, I will meet with a new doctor and will begin this process again.

But for now, I pay the full cost, subsidized by a reduced portion of coffee each morning.

And throughout this time, I’ve learned more about Ubrelvy.

My biggest issue has been that I’m still limited to 10 doses a month despite no risk of rebound. I learned that last December, Ubrelvy was approved for 16 dose boxes.

[a previous version of this article notated 15 doses in the boxes, this has since been corrected]

That would be huge for me.

But, my insurance hasn’t caught up and isn’t yet dispensing anything larger than 10 dose boxes. But this also provided an even more frustrating backdrop to my fight for a lower cost, I was rationing medication while having more attacks than I could treat with the full knowledge that this was just an insurance rule that was giving me less medicine than I could technically have to begin with. And in June with my ever failing attempts to get my doctor’s office to co-operate the sheer idea of asking for a totally different prior auth was out of the question.

That will be a fight for next year which will likely require a new prior auth for the 16 dose box. And hopefully my new doctor will be much more equipped in submitting these critical documents.

Medical Necessity Forms shouldn’t be this hard. I shouldn’t have a year’s long process in getting something like this when I certainly qualify.

And in times like those we’re living where everything at the grocery store costs more, insurance is going up, most goods and services are also increasing in cost getting a break at the pharmacy makes a huge difference.

Update Sept 9 2022

With just a week remaining before I see my new doctor, I discovered the access barriers I fought against all year and anticipated having to center at my new patient appointment, have simply been lifted.

My insurance moved Ubrelvy out of the non-formulary tier and into the secondary formulary tier.

No more medical necessity forms. No more fights.

A.

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