“Facebook is for the living, not the dying” – Regina Holliday
It finally happened. The day my facebook feed included information about a friend’s illness. This is the photograph my friend Matt posted to his feed. Normally I don’t play that close attention to everything in there, but this caught my eye immediately. The caption is the title of this post.
When we talked on the phone, I understood that this was his “coming out,” his words, as he says in the old days, people with Multiple Sclerosis went into the closet. I remembered the image of Multiple Sclerosis that my generation has, which is that of Annette Funicello, the perky mouseketeer turned into debilitated image of her former self.
Matt has been diagnosed for about 4 months now, he had his first flare probably 10 years ago. We talked when he was first diagnosed. This time he told me to tell his story freely, which I am doing here.
I had a few questions, first of which was, “How do you pay for this?”
He told me, “If you’re willing to crawl through the muck, you get the health care you need. In the US, there’s a lot of fear before you feel safe. When I first saw the cost of the medication (approx $30,000 per year), I started crying.”
He described the most confusing way in which the medication is financed – because Washington State insurers do not cover medication costs over $3,000 / year, patients apply to drug assistance programs which appear to redistribute funds in a way I don’t understand. The drug’s website has a whole section of testimonials by patients who have received this assistance – a separate section from the testimonials about the impact of the drug itself.
We talked about what it’s like to live with Multiple Sclerosis today and where people get help. He told me,”This generation (of MS patients’) tool is the keyboard. They don’t have multimedia yet.” This means that patients are just getting into social media, and their tool of choice appears to be YouTube, because still photographs are not as descriptive as video for this group.
CCSVI : Patients and Doctors and Curiosity of the Medical Profession
Matt told me about a medical controversy that is near the peak of activity, and it seems to have all of the elements of a situation that stretches the medical profession’s relationship with patients. CCSVI is Chronic Cerebrospinal Venous Insufficiency. If you look at this screen shot from YouTube, you’ll see it clearly: A patient reporting recovery from a new treatment that’s unproven, originated overseas (note the advertisement on the right), that didn’t originate from the medical establishment. He wanted me to see two different physicans’ approach to this controversy, which I have embedded below from a report by KOMO in Seattle, just a month ago.
First Neurologist: Matt told me that this physician’s commentary was less appealing, he did not see him as a supporter of the community. I watched the video and actually felt like I might have taken the same approach in thinking about this new treatment. Note the discussion of the impact of social media.
Then I watched the Second Neurologist: Matt told me that this physician was more appealing, more a supporter of the community, and I could see the difference. His son has the illness, and he clearly has the curiosity to find out “why.” It ties back to my post yesterday about patient empowerment, the idea that our patients want us to be curious about the “why,” that’s what they expect from us.
I do have a frame of reference for this controversy and it’s HIV. I remember when viral load testing was considered heretical, patients were left to die in hospital wards with minimal contact from health care teams, and interested infectious disease specialists were shunned by their colleagues for exploring alternatives. I don’t know if this treatment will follow the course of HIV (acceptance and mainstreaming) or not, and Matt didn’t ask me to predict this.
Which physician’s approach is more appealing to you, and how should the profession be when our patients want us to be interested on their behalf?
“Don’t judge yourself based on what your body can do”
Matt told me that the expression, “You have MS, MS doesn’t have you,” is bulls**t. He said, “MS has you, it has me, it has all of us. MS makes a lot of decisions for us and it doesn’t ask permission.” He also said:
While MS may have me, it may decide what I do, where I go, or even what I want to talk about. But MS is not me. It has nothing to do with me, and neither does my physical body, and neither do any of the other physical attributes or challenging conditions that have affected my life.
The other thing Matt told me is to always remember that there’s someone in the room that’s dealing with and needs the health care system, and he wants people to “watch their vitriol” when they think about the health care system. He doesn’t blame drug companies, it’s “the politicians, for not giving the guidance they should be giving.” I pressed him on this point, and he repeated it as written. He wants them to see the images, and this is why he posted the photograph above in the first place.
Have you ever met someone that you instantly got along with, who’s super smart and gets all of your jokes, that you spend almost all of your time laughing when you’re with them, who lets you make mistakes and helps you learn from them? That’s the kind of friend that Matt is for me. I couldn’t have predicted that he would be the first person on my facebook feed to demonstrate the impact of affordability (or lack thereof) in health care. I’m sharing his story here because I care about this issue, and because I care about my friend Matt, and all of the people he will help through his strength.
Thanks for reading.
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