UPDATE: Wednesday, Apr 26, 2023 · 11:55:11 PM +00:00
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Jensequitur
Kravox submitted this comment, containing some real answers to my dumb questions.
- Why doesn’t Accredo warn you when you’re about to run out of your copay assistance? Who has $6,900?
- The pharmacy probably doesn’t know. That information would come from the Gilenya Go program. Their website does say that, “The Program includes the Co-pay Card, Payment Card (if applicable), and Rebate, with a combined annual limit up to $18,000.” The pharmacy bills your insurance (BCBS, probably the Express Script pharmacy benefits manager (PBM), issued by Cigna) for the total amount of the drug. The insurance system lowers that amount to their contracted rate, determines your portion of that amount,
- Why does the pharmaceutical industry want their patients sick, poor, and out of their medication? I can’t afford to take Gilenya unless I can get assistance from the Novartis Patient Assistance Program (which I’m currently applying to.)
- There are several factors at work. The pharmacy wants to get as much money as they can for the medication they dispense. They typically submit costs much higher than market value to get there.
- The “client” (typically an employer, i.e. the one who picks which insurance company they offer plans through) wants to pay as little as possible for the medication that you take and thus restrict what you can get (i.e. must get generic when possible).
- The PBM (Express Scripts, for example) acts as a middle man to negotiate the price that they will pay the pharmacy for medications (lowering that submitted price) and the price that the client will pay to cover that medication through several means (contract pricing, formulary restrictions, step therapy, Prior Authorizations). ALL of those means must be approved by the client.
- Finally, there’s the drug manufacturer. They will charge the pharmacy whatever they can for the drugs they produce.
- Why wouldn’t BCBS allow me to take a generic?
- My gut reaction is that in order to get the medication covered on the Gilenya Go program, it cannot be generic. They only cover Gilenya. That being said, is the generic a covered medication on your formulary? Would that be a cheaper alternative without the Gilenya Go?
- Why don’t they declare Gilenya a medically necessary drug? Part of the reason they’re allowed to do this is that drugs like Gilenya are officially not medically necessary to sustain life. But if you ask a doctor (or an MS patient like myself) Gilenya delays progression. It keeps me in the workforce longer.
- I’m not sure what medically necessary means in this context vs industry terms. I get the idea of what you’re saying, but functionally, I’m not sure how that would be implemented.
- Why is an MS patient like myself with cognitive impairment given such a complicated mess of paperwork to analyze? Why is the data I need about my own insurance plan not available on the BCBS website? Why isn’t there ANYBODY in the system that can look out for chronically ill patients?
- A very good question. See if your plan participates in SaveOnSP through Express Scripts.
The year was 2022, our company had changed hands, and I had to switch to a new insurance from BCBS. I wasn’t familiar with it, but it said PPO and I was in a hurry. Usually the copay assistance covers the gap until my deductible is met.
I got a weird charge that I wasn’t expecting from Accredo for $2,434.32 in April. I assumed that they had run the insurance wrong, because I have copay assistance and never had to pay for any of the medication.
In August, when I refilled my Gilenya again, it cost me $6,900.
Gilenya is a specialty disease-modifying drug used by people with multiple sclerosis. It retails for around $10,000 for a 30 day supply. It’s an oral rather than an injectable, which increases ‘compliance’ among MS patients. I get the medication through a copay assistance program called Gilenya Go. Accredo is my specialty pharmacy through Blue Cross Blue Shield. I get the medication for less than that, but it’s not cheap.
When I was prescribed Gilenya, I was assured I would never have to pay a thing out of pocket, because my income wasn’t enough to pay for the cost of the medication. I qualified for the Gilenya Go program, which covers your medication up to $18,000.
So I was POSITIVE that this charge couldn’t exist. There was NO WAY I could have been charged that much, because the Gilenya Go program had assured me that I would pay nothing out of pocket. I was sure this was all a paperwork error.
2022 ended and the ‘error’ had not been resolved. I switched my husband and I to the HSA/HMO option for 2023, as it was $230 a paycheck instead of $450.
Had to switch neuros because of the HMO, had to get a new scrip for Gilenya. The doctor prescribed me a generic. I got the copay assistance arranged for the generic, tried to fill it, and BCBS wouldn’t approve a generic. They insisted I take the name brand. Okay, fine, my copay assistance with Novartis was still good, so we got the scrip for Gilenya set up and I was good to go (I went a week without medication because they couldn’t get their act together, but hey, it finally got here.)
First three refills went fine. Accredo called me to schedule a refill, I said sure, let’s get it, and BAM I’m out of copay assistance. I’m now liable for MORE money to Accredo.
The light finally dawned Monday. I got with my HR person at the office, and she gave me the bad news.
My crappy insurance plan for 2022 was a BCBS HSA/PPO. This meant that all the cost of the medication came out of our deductible, and once the deductible was met, the insurance would pay for the rest. The new plan for 2023 was also an HSA based plan, but an HMO instead. The same kinds of problems though — I had to get through my deductible before the insurance would pay for my medication.
In the past, my copay assistance handled the deductible hump, so when the copay ran out I was through my deductible, and the cost of the medication was covered for the rest of the year. Now because of a copay accumulator, the money that came from the assistance fell down a deep dark well, and once that money was gone, I was on the hook for the rest until I had met the deductible.
I have several, several, several questions.
- Why doesn’t Accredo warn you when you’re about to run out of your copay assistance? Who has $6,900?
- Why does the pharmaceutical industry want their patients sick, poor, and out of their medication? I can’t afford to take Gilenya unless I can get assistance from the Novartis Patient Assistance Program (which I’m currently applying to.)
- Why wouldn’t BCBS allow me to take a generic?
- Why don’t they declare Gilenya a medically necessary drug? Part of the reason they’re allowed to do this is that drugs like Gilenya are officially not medically necessary to sustain life. But if you ask a doctor (or an MS patient like myself) Gilenya delays progression. It keeps me in the workforce longer.
- Why is an MS patient like myself with cognitive impairment given such a complicated mess of paperwork to analyze? Why is the data I need about my own insurance plan not available on the BCBS website? Why isn’t there ANYBODY in the system that can look out for chronically ill patients?
Side note:
It occurred to me on the drive home that this is really just a pissy little fight between Novartis, the mail order pharmacies, and Blue Cross Blue Shield. Novartis doesn’t want Gilenya to go generic. They’re fighting it tooth and nail. So this is one way the pharmaceutical industry can put pressure on Novartis and other large drug companies — by taking the power of the copay assistance away. Chronically ill patients like myself will have to go to cheaper, less effective drugs. Novartis is retaliating by discontinuing some of the Gilenya copay assistance and creating a brand new patented formulation of fingolimod, called Tascenso, with its own copay assistance program. But if the mail order pharmacies are playing the copay accumulation game, they’ll do it with the new drug too, so I’m not sure how this is going to work.
What do we do about it?
One thing YOU can do is to write your Congress critter and ask them to support H.R. 830. This bill directly addresses the role financial assistance plays in our health care.
To amend title XXVII of the Public Health Service Act to apply additional payments, discounts, and other financial assistance towards the cost-sharing requirements of health insurance plans, and for other purposes.
This won’t help me, specifically, dang it, but that’s okay. I screwed up and could have done a few things better.
Meanwhile, I have to go apply for a freaking LOAN from my bank to pay for my MEDICATION because my crappy insurance plan won’t cover it. Heck of a system we got here.