Multiple Sclerosis Awareness Month

 

I don't normally post twice in a day, especially with so much to do with school, but this topic warrants it.

For an assignment for my other class, being that March is Multiple Sclerosis Awareness Month, we were tasked with writing a discussion post on it - what we learned from our textbook and other sources, cited in APA 7th Edition style.

One person did so, but from a personal perspective - as she lost her mother with this disease, who had been unable to afford the new disease-modifying agents and immunologic treatments AKA biologics or  monoclonal antibodies ("mabs.")

(FYI - we still have no clue what causes MS or how to cure it, but in the last 15 years, we have been able to slow the progression of certain types through immunologics without really understanding why - but they are ungodly expensive.)

Of course, I won't share her post, but my heart went out to her, so I wrote this ... 

Oh XXX - I am SO sorry to hear this. I don't know what I could possibly add to this story, especially with any pertinent study information, but I just wanted to reach out to say I'm so sorry this happened to your mother and to your family. That must've been hard to write.

It just highlights two things:

 

1.  That we are still in the infancy of even having even an inkling of understanding of this disease. It doesn't help that sometimes when health professionals don't know what they're dealing with, they offer the most absurd solutions - some of it is innocent ignorance trying to help in some way but having no clue how, some of it is dismissiveness based on whatever socioeconomic factors there may be, and some of it is just pure laziness/negligence. 

2. Our healthcare system needs an overhaul, particularly when it comes to pharmaceutical prices. I, for one, am all for some form of publicly-funded healthcare with price caps - because our current system rewards the wealthy as if they worked harder or their lives are more valuable than anyone else's. (I don't know anyone who works harder than minimum-wage labor, btw, especially moms.)

Being that my former contract as an MT was transcribing the interviews between Big Pharma and insurance companies, PBMs, and/or key-opinion leader clinicians, test-pricing new products before launch, both nationally and internationally - you would be shocked at what the rest of the world pays for drugs versus us. Basically, we are not only paying for these drugs for the rest of the world, but making these companies rich greedy monsters.

Regardless, I just want to reaffirm what you already know - your mother mattered, she had value - what she went through to give you all life is more heroic than any person lucky enough to be born wealthy that I can think of.

If I could, I'd give you a big hug, right now, I'm sure this was rough to write - but you just memorialized her publicly, on behalf of her, and we're applauding you both for it. :)

~ Chrystal