Two Faces of MS 💋

It was going to be modeled after Switzerland’s insurance system, which I used for four years. It would have been amazing. But MoscowMitch said NOPE. I hope he drops dead on live TV.

We need our Dem electeds to finally fucking pass the NY Health Act. It was first introduced in 1992. So when they tell us they support everyone having health ins & then refuse a floor vote, it tells me all I need to know. We’ve had all 3 branches for how many years now?

$250 fucking million on a gold plated ballroom and I’m staring down not having health instance next year.

Out of one side of their mouth Democrats say, "of course everyone should have healthcare" and then they do NOTHING about moving us to actual coverage for all. I'm so incredibly angry. 2/2

And as of today this "free" healthcare has cost me $12,534 (so far) with 2.5 months left in the year. This is the very definition of insane; banging our heads against the wall and expecting a different outcome. I blame both sides of the aisle for this gross display of capitalism. 1/2

The kicker? Seeing single payer up close this year? It works and everyone should have it. And healthcare should be a right of birth not a privilege for only the wealthy. 8/8

To top it off the catastrophic plan no longer exists and the cheapest plan is now $675pm with barely any coverage.

I know I have it better than a lot of people, but I also live with two diseases. For the first time in my life, in 2026, I won’t have health insurance. 7/8

With everything that’s happened this year personally, and the sheer amount of government workers being laid off, the competition is fierce. I have several prospects and I’m working on some long term opportunities, but there’s no income timeline at all. 6/8

Today begins 2026 open enrollment for NYS and I was told, even though I meet the income threshold, that I no longer qualify for either Medicaid OR financial assistance. 5/8

The NYS system read it as such and said I qualified for Medicaid, which was shocking. I called the state to make sure I did the application correctly. They assured me that they dealt with consultants in my position all the time and said it’s fine and I was approved. 4/8

At the time I filled out the application in November 2024 I was technically “unemployed” (e.g. between contracts) and waiting for more client work. 3/8

Last year I was resigned to having only catastrophic for 2025 @ $330 per month with a $10k deductible. I’m paying so much OOP anyway, might as well keep it in my account for as long as possible. 2/8

Let me tell you about the business of health insurance in this country.

I am a single person LLC consultant.

I have had insurance on / off through the NYS ACA for years. It’s the most expensive exchange in the country when you don’t qualify for subsidies. 1/8

Did you know?

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2/2

We need single payer health insurance in the U.S. 1/2

open.substack.com/pub/drjessic...

People truly don’t get that even if you have health insurance through your employer, you will be paying more. We could easily have single payer in the U.S.

For a myriad of reasons, we need to be able to get medicines from whatever pharmacy we choose.

And imagine how many companies are getting a cut along the way, with the developer at the top setting the price. 3/3

Then if it's a speciality drug, no idea why they're treated differently, the PBM sends the script to the specialty pharmacy.

If the speciality pharmacy doesn't screw it up, you get your meds (they screw up a lot)
Whether speciality or not, meds (all meds) can be altered by temps (hot & cold). 2/3

The U.S. healthcare system

To get the medicine for my MS the following has to happen.

Doctor prescribes

Insurance determines if it's covered (crazy right? If doctor prescribes insurance should have no say)

If insurance covers, then PBM (known as mail order) has to get the script to fill. 1/3

$$$$$$$$$$$$$

My favorite used to be the safety pins to check sensitivity. So much for high tech diagnostics. 🤣🤣🤣

I didn’t change to a B-cell depleter because I didn’t want to have to worry about infections & PML. It was the right decision. After 16 years on Avonex I have zero progression or disability.

Efficacy of alternative vs. standard dosing strategies of anti-CD20 monoclonal antibodies in multiple sclerosis: A systematic review and meta-analysis Multiple sclerosis (MS) is a chronic, inflammatory, demyelinating disease of the central nervous system (CNS), affecting approximately 2.8 million individuals worldwide (Walton et al., 2020). Among th...

Can you take b-cell depleters like ocrevus, kesimpta, and rituximab less often? According to this meta analysis of 19 studies on the topic, YES! "Extended interval dosing does not increase the risk of relapse, MRI activity, disability progression." www.msard-journal.com/article/S221...

S2 Episode 3: Progress in Progressive MS: BTK Inhibitors and HERCULES Can BTK inhibitors finally move the needle in progressive MS? Dr Robert Fox joins Dr Anne Cross to unpack the results of the HERCULES trial and explore what’s next.

Professor Robert Fox on progressive MS and bruton's tyrosine kinase inhibitors. Tolebrutinib and the HERCULES trial result. www.medscape.com/viewarticle/...

As someone who lives w MS

Live long enough, and you’ll-
A. Get old.
B. Acquire some kind of disability bc our bodies were not designed to last forever. So, when you address how society should treat people with disabilities & the elderly, remember that if you’re lucky, one day that will be you.