The High Cost of Medication In My Life

Three weeks ago, I had a non-damaging (ND) flare (I dislike the term ‘pseudo’). My feet and legs began to go numb at the same time my scalp was tingling and I had the feeling that the skin was separating from the skull, all the way down my face. My vocal chords tightened, but I wasn’t sure if my larynx was also closing as that’s in my history. By the time EMT arrived, I could barely speak. Astoundingly, I could walk better than I’ve been able to since the 2019 flare had me hospitalized for a month and left me partially paralyzed. So with the help of my walker and my incredible local Fire/EMTs, I walked out to the ambulance.

How I spent my evening

Then I spent 12 hours in the hallway of the local ER, until shift changeover when I was taken to a room and seen by a lovely doctor who finally ordered an MRI. By that time, I knew it was ND because most of the initial, extremely frightening symptoms had eased. And what also eased, slightly? - the extreme muscle tension in my leg and torso I’ve had for three years! It’s trying to tighten again, but I’m merciless in stretching throughout the day.

Unfortunately, that MRI showed new lesions since the previous MRI just six months before in December 2021. The grant I had to help with the copay ran out in December. I haven’t been on a disease-modifying drug (DMD) since mid-January - is this a coincidence? Does it matter? I have MS and can’t afford to take a generic medication.

In a catch-22

The copay for me on my Providence Advantage Medicare plan (which is a very good plan) for Glatiramer acetate, a generic of Copaxone, is $2,235 per month. FOR. A. GENERIC. I’m unable to take advantage of the drug company’s (Mylan) own financial assistance program (FAP) because of the Federal Anti-Kickback Statute (1).

But even Mylan’s (and other pharmaceuticals) own FAP is not infinite, so eventually, people with all kinds of life-changing, chronic diseases ( Parkinson’s, diabetes, heart disease, arthritis, kidney disease, HIV/AIDS, lupus, etc.) join the long list of people, like me, whose copay for a DMD is double the disability insurance payments and/or Medicare we’re receiving. And we all end up asking for help from the same foundations.

How all of this makes me really feel

This isn’t just about the outrageously high cost of medications in general, or for copays for generic medications gouging the most vulnerable of us (oh, yes, my recent MRI has shown me to be among that group?), or about laws meant to help that actually hurt… it’s about a broken system. It’s about a first-world country having third-world medical care because it doesn’t know when to say, “No” to the worst of capitalism.

It’s about lobbyists having the ear(s) of Senators who make the laws, or strike down the laws, or stall the laws. Because - good graciousness! - we can’t pass laws that would make less money for our big capitalist donors.

It’s politics at its worst: politics being run as a business, not a service to your fellow country people. It has to stop. We’re literally dying.

(1) The Anti-Kickback Statute prohibits pharmaceutical companies from offering or paying, directly or indirectly, any remuneration – which includes money or any other thing of value – to induce Medicare patients to purchase the companies’ drugs.