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The First Rule of MS Club

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I’ve been part of the multiple sclerosis (MS) club for 20 years—and I never even asked to join. I don’t think any of the other members particularly wanted to join either, yet here we are paying dues regardless. One of the biggest membership dues we pay to this club has nothing to do with what the illness does to our bodies. It has everything to do with the war we wage to get necessary care.

As an MS patient, I am all too aware of the commodification of my disease. MS is a cash cow for drug companies. Many MSers, understandably, think that big pharma is less interested in curing MS and more interested in profiting from this autoimmune condition. What’s better than a disease that requires a lifetime of drugs at exorbitant prices? I’m willing to play the game with pharma though, because the alternative is a declining health status which only hurts me and no one else. I currently use one of the heavy-duty intravenous infusion drugs that is the new “golden child” of the MS community. It has shown greater efficacy than some older drugs on the market. I’ll define “greater efficacy” for you: I might avoid a cane or a wheelchair for a longer time because I take the drug. I’m at the stage in my MS where I need a “big gun” to control it and because of that, the intravenous version of an AK-47 blasts through my body on a regular basis. And it’s working for me—radio silence on the MRI front since starting it. This is great news because my brain and spinal cord currently resemble Swiss cheese and I was sick of the constant beating my own body was exacting on itself. MS Club, like in the film “Fight Club,” really packs a self-inflicted punch on its members.

The first rule of the MS club is: if it’s working, don’t mess with it. Let me repeat: IF IT’S WORKING, DON’T MESS WITH IT. Herein lies the rub: insurance companies’ goal is to pay as little as possible for treatments while the pharma companies’ goal is profit maximization from their drugs. Guess who ends up stuck in the middle?

Recently, I was informed by my provider that my new insurance company was refusing to pay for my brand name drug, of which there is no generic. For cost savings, they wanted me to take an older drug with a slightly different formulation but same mechanism of action because there was a generic available. The provider informed me that they were aware of my severe allergic reaction in the past to an MS drug and the myriad of allergies I have, but said most people tolerated the proposed generic drug very well. The provider also said that the two drugs work the same way on the immune system and that they had used them interchangeably without incident. I was rapidly given a bunch of statistics that were supposed to make me feel good about this turn of events. The provider thought this data would quickly end the conversation.

However, she did not anticipate that I had educated myself on the slightly different compositions of the two drugs and knew the generic might be riskier for me to take. The generic drug consists of human and mouse antibodies mixed together, while the newer, brand name replaced most of the mouse antibody with a human framework. The idea behind the brand name medication was to reduce initial allergic reactions and to improve long-term tolerance. Due to higher amounts of rodent components in the generic, patients run a greater risk of developing antibodies to the drug over time or having a strong allergic reaction upon initial infusion. For a drug requiring a lifetime of use, neither of those scenarios are particularly appealing.

Let’s talk about strong allergic reactions: The first infusion drug I ever tried caused breathing trouble such that I turned purple and felt like an elephant was laying on my chest. Medical staff stopped the infusion and administered IV drugs to halt the reaction. Afterwards, my extremities swelled, and I had petechiae all over my body. My history proves that I’m in that small percentage of people that are at risk for a potentially dangerous allergic reaction…so why risk it with a drug that might have more components to which I am allergic?

I explained my horrible reaction to my provider, and yet she reiterated that their hands were tied due to the insurance. The burden was on me to prove I needed my current drug by trialing the generic. They felt comfortable administering it to me because I would be monitored in the infusion center. Plus, the pharmacist had said most patients tolerate it quite well. I felt lumped in with “most patients” when I clearly had a reaction in the past that “most patients” do not experience. Effectively, they were asking me to risk a severe allergic reaction that might require hospitalization to “prove” that I needed my current drug. They felt “comfortable” doing that. I explained that they were not injecting it into their veins. MS drugs can be scary as it is— the side effect warnings for them are terrifying. It takes a tremendous amount of bravery just to take them. So, when an insurance company effectively tells me to “buck up” and risk anaphylaxis just to “prove” I can’t tolerate the cheaper drug, I don’t have additional courage to chance that, nor should I. As the patient, I felt entirely uncomfortable jeopardizing my safety simply because my insurance refused to pay for the drug that works for me.

Furthermore, changing my medication complicates my MS treatment. Let’s say I get the generic infusion without incident, but I have an MS attack three months later. Doctors will probably be unable to pinpoint if the generic specifically isn’t working for me, or if the immunomodulating function of these drugs, whether generic or brand name, is no longer working for me. I’m essentially aced out of both drugs at that point when perhaps it was the generic not working as effectively in my body. I have few medication choices left, but sure Big Insurer, let’s play Russian roulette with my health status.

My part-time job became stress, tears, phone calls, and self-advocacy to ensure I get the drug that I needed and that was working for me. I got the drug approved…for one infusion. What happens for the next one is still unknown. Is it fair for insurance companies to treat a human being like a bottom line, possibly compromising their health and disease stability just to save money? Is it fair to a chronically ill person who moves mountains just to function normally to have to battle everyone just to maintain that functionality? Is it fair that pharmaceutical and insurance companies act like two toddlers that won’t compromise with each other at the expense of MS patients that do not need that additional stress?

I fight MS every day, I shouldn’t have to fight for the drugs I need too. This broken system needs to be fixed. Meeting of the MS club adjourned.

Getty image by AaronAmat

Originally published: February 6, 2023
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