stonebender: (Default)
[personal profile] stonebender
Hi All,
I will be posting this to lots of places, so friends and family may very well get multiple copies of this. I’m also explaining things that my family and close friends probably know already. Sorry about that, but I’m feeling like I want my friends, family and even some acquaintances to know some things about what’s going on with me in the near future.

For those who don’t know already, I’m disabled by a neuromuscular disease called Spinal Muscular Atrophy type 2. Because certain motor neurons near my spine don’t work properly my muscles can’t get stronger and slowly atrophy as I age. This happens at different rates. Some children who have a more serious form of my disability die fairly young without some major medical help. Most of us don’t live a very long life. When I was young doctors were telling me that I might not live much past 40. I had made peace with this and have happily proved doctors wrong for 19 years. At 59 doctors haven’t had anything to offer me as far as treatment. My disability is fairly rare, so I never expected a cure, or treatment in my lifetime.

So I was boggled when the FDA approved Spinraza, an actual treatment for my disability, earlier this year. The drug must be administered through a lumbar puncture in my spine. This is not a cure, they aren't completely sure the drug will do me much good. It was tested on children with SMA types 1 and 2 with encouraging results, but there haven’t been many tests on older adults. So even though it has been approved for use by adults there isn't a lot of data as to its benefits.

Spinraza is remarkably expensive. I’ve seen $125,000 per shot. I’ll need four “loading” doses. The first three every two weeks on a strict schedule. The fourth shot a month after the third. Then I need to take a shot every three months for the rest of my life.
Because of the cost and the lack of data for older folk there has been quite a bit of conflict around whether insurance companies will cover the drug, especially Medicare. The trouble with Medicare is that they will not pre-approve any treatment. They expect hospitals to provide the treatment and then bill Medicare and Medicare will then tell them what they will reimburse. This has stopped hospitals from trying the drug on adults who are covered by Medicare (like me). Fortunately for me, Stanford's neuromuscular clinic has decided to go ahead and treat one adult with Medicare to see about reimbursements. Somehow, I have been chosen to be that one person. I also have Medi-Cal (called Medicaid in the rest of the United States). Medi-Cal will not be a primary insurance for an individual unless it's the only insurance an individual has. However, they will cover what Medicare won't cover. So I should be financially okay.

The process has me conflicted emotionally. I've spent my entire life as an advocate for people with disabilities. Advocated and spoken on behalf of people with disabilities telling the general population my life is fine the way it is. I am a complete, valuable human being who enjoys life. My life is not less because of my disability it is in many cases a source of pride. I have learned so much because of my disability. It has made me aware and sensitive to important things that I’m not sure I would’ve been without my life experience. I feel slightly traitorous in my acquiring the treatment. I don’t want people to think that I don’t value the life I have because I’m getting a treatment that might improve my strength.

I’m also scared of the lumbar puncture. I don’t want my fear to be the reason I don’t get treatment. I'm also not quite sure how to feel about any of it. It has never occurred to me that there would ever be a treatment for my disability largely because it's considered relatively rare. Even though I will be getting Spinraza, I still don’t know how to feel about it, about me, or what this means to the core of my advocacy. I’m hoping clarity will come, but it hasn’t yet.

I hope that communicates my conflicted feelings about what I hope will be a beneficial experience. Tomorrow, 16 June at around 9 AM I will be getting my first Spinraza shot in Palo Alto at the Stanford neurological clinic. I assume things will go well. I’m told, I may not feel any difference for a while. Some adults with SMA have felt improvement. I hope I’m one of them. Anyway, those who know me and care about me do what you feel comfortable doing to support me. My religious/spiritual feelings are complicated. But I feel like supportive thoughts or prayers can’t hurt and may help. I’ll try following up after Friday. Thank you all

(no subject)

Date: 2017-06-15 10:46 pm (UTC)
jesse_the_k: My head on foam mat under pine trees (Default)
From: [personal profile] jesse_the_k
Wow, that's terrifying/wonderful/strange/uncertain!

So, sympathies/congrats/best wishes.

Also, Steve Brown is a long-time disability rights/disability culture guy (now retired) who experienced a dramatic improvement in his health late in life. He wrote about this in Surprised to be Standing: A Spiritual Journey.

It's available at Smashwords in every possible electronic format, and they have the first 20% as a free preview

(no subject)

Date: 2017-06-15 10:49 pm (UTC)
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
From: [personal profile] redbird
Thanks for letting us know. I wish you the best (even if you're not sure yet what that would be).

This is about the emotional conflict; cut tags don't work in comments, so I'm rot-13ing it in case you don't want anything resembling advice right now.

V unir fbzr gubhtugf nobhg jul lbh'er abg orgenlvat nalbar ol gelvat guvf (naq nf lbh pna frr, V qba'g guvax lbh ner). Bar vf gung aba-qvfnoyrq crbcyr nyfb gel gb vzcebir gurve yvirf va inevbhf jnlf, naq vg jnfa'g (sbe rknzcyr) qvfyblny gb Arj Lbex sbe zr gb zbir ryfrjurer jura V unq n ernfba. Naq cneg bs gung vf gung vqragvgl vf pbzcyrk: ertneqyrff bs jung unccraf zrqvpnyyl, lbh jvyy nyjnlf or gur Fgbaroraqre jub unf fcrag uvf yvsr nf na nqibpngr sbe crbcyr jvgu qvfnovyvgvrf, naq unf yrnearq sebz yvivat jvgu lbhe fcrpvsvp qvfnovyvgl naq sebz qrnyvat jvgu bgure crbcyr'f ernpgvbaf gb gung.

(no subject)

Date: 2017-06-15 11:38 pm (UTC)
tenacious_snail: (Default)
From: [personal profile] tenacious_snail
Thank you so much for the update. I hope that things go as smoothly and pain-free as possible. This seems like a really complicated situation, and I appreciate that you're willing to educate and inform.

(no subject)

Date: 2017-06-16 01:39 am (UTC)
voidampersand: (Default)
From: [personal profile] voidampersand
Good luck!

(no subject)

Date: 2017-06-16 01:43 am (UTC)
snippy: Lego me holding book (Default)
From: [personal profile] snippy
I appreciate your sharing your thoughts and feelings around this. I will pray, since you say that's okay with you.

(no subject)

Date: 2017-06-16 04:17 am (UTC)
baratron: (test tube)
From: [personal profile] baratron
Guy,this is amazing news! I wish you luck and the best possible outcome.

You likely weren't chosen at random for this treatment. It could be that your gene mutation is ideal for its mechanism of action. It could be that you are in relatively good health for a person with SMA 2. It could even be that you're the oldest person still alive that the researchers know of.

Still, it's unlikely that you will be running marathons after your fourth shot. You're likely to remain severely disabled, but with a little more mobility or sensation. Essentially, you're in a drug trial which may provide data to help others in the future. It's a tremendous opportunity for you since the drug is so expensive, but you may receive no improvement at all.

Maybe that's why they chose you. Maybe they felt you were well enough adjusted to your disability that if the drug does nothing, you'll cope?

I hope that you have minimal side-effects and can provide some great data!

(no subject)

Date: 2017-06-16 07:59 am (UTC)
egret: egret in Harlem Meer (Default)
From: [personal profile] egret
Wishing you the best outcomes on all levels. I'll say a prayer for you.

(no subject)

Date: 2017-06-16 05:15 pm (UTC)
tiger_spot: (Default)
From: [personal profile] tiger_spot
What a tremendous event! I hope it's tremendous good, in the end, but whatever happens it is tremendous big. Conflicted feelings make total sense. I hope everything is going / has gone smoothly this morning, and I wish you all the best!


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