Tuesday, June 20, 2017

Friday, June 16, 2017

My First Shot (Almost)

Today I was scheduled to get my first Spinraza treatment. I've been told
that I am the first Medicare recipient to get treated. Because of a weird
Medicare regulation, I couldn't get treated in the new building at Stanford.
Something about a requirement that wouldn't allow me to be treated more than
200 or 300 yards from the hospital. So Connie needed to schedule a room in
the old building, which wasn't familiar or really set up properly for the
lumbar puncture. I was put on a small examination table that was fairly
uncomfortable. Connie really wanted to do the puncture with me sitting up,
but I haven't been able to set up on my own since I was about 20. They had
people to help but it was ultimately decided to do the procedure with me
laying on my side.

They had sonar imaging system to locate the space in my vertebrae, but the
machine couldn't seem to help visualize my spine properly. They tried using
a few places that looked promising from the image, but none of the possible
sites worked. Connie attempted several more times, but never succeeded. They
called in a neurologist who had assisted Connie with other SMA folk. The
neurologist was no more successful. After 3 1/2 hours of trying to get a
lumbar puncture, I couldn't take the discomfort of being in the position I
needed to be in for them to do their work. I'm very disappointed, and still
feel like if they had tried one more time, it would've worked. Of course, I
felt that way at after every attempt. I'm pretty exhausted, disappointed,
frustrated and angry.

It's important to note that the staff were just great, every one of them.
Apparently my spine is just a little more tricky, plus my vertebrae are
fairly compressed. Next step is radiology, to assist Connie in getting the
Spinraza into me. It's problematic to use radiology with Medicare, but
Connie said, "There are at least two doses of Spinraza with your name on
them." She's determined to find a way. All the staff was clearly unhappy
that they couldn't help me today, but they assured me that I had done
everything that could have been expected of me. So, the schedule they gave
me is canceled for now. Connie seemed to think there might be some
regulation changes in July that would make it easier for me to be treated in
the new building that they are used to doing these treatments in. I'll need
to wait a little longer.

Thursday, June 15, 2017

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