Like
any medical trial, the HSCT study at Northwestern has prerequisites. Among
other things, participants have to have tried some of the disease modifying
drugs without success (these are Copaxone, Avonex, Tysabri, Tecfidera, Gilenya, etc. The big scary
drugs that people with MS have to take to keep their immune system from eating
the fatty myelin sheath around their precious, precious nerves). This qualifier
was easy: I’ve done four different DMD’s over the ten years I have had this
lovely disease. So, check!
The
next qualifier is that you have to have had at least two relapses requiring
steroids in the past twelve months. This also works for me, at the moment, as I
had two relapses last summer, both requiring steroids and a trip to the
hospital. Check!
So basically,
if I had sacks of cash right this minute, I could go to Chicago and go through
this process. I meet the criteria to be evaluated for the trial. Of course, I
don’t have sacks of cash, or insurance that is willing to cover any
of the costs. This means that fundraising is a necessary part of this whole
thing, as I believe I’ve mentioned.
But I started doing some math in my
head, and there is a big honking flaw: My plan was to fundraise and
reapply in January with better insurance to lower the overall cost from almost
$200,000 to $50,000. Still a massive number, but obviously $50k is a quarter of what it would cost without support from health insurance. Okay, so far so good. Big
number, but doable. And then it hit me: I’d have to have two more relapses in
the next six months to qualify again in January.
That’s
right. Even though I have had relapses in the past that have nearly killed me,
and even though the ones last year caused seizures that crippled the right side
of my body for months, if I don’t have more attacks this year I just won’t
qualify come 2016.
What
does that mean? It means that even if I were able to raise the money, unless I
get worse this year, it might not matter. What do I do? I have options, of course,
we all do, even if they aren’t particularly good ones. Option 1: I can go off
my meds entirely and court a relapse. I’ve already got a few of the smaller
symptoms, it probably wouldn’t take much to push me into exacerbation
territory. But that feels irresponsible with one income, two small children and
myself a full time student looking to graduate next summer. I don’t have the
time, the money or the support system to have a relapse right now. Not to
mention, there is no guarantee when you have a relapse that those symptoms will
go away with steroids. How dumb would I feel if I went off my meds, had a
relapse and lost my legs? Just too big a gamble to take. Though honestly, as I type this three of the fingers on my left hand are numb, so I'm pretty sure if I had an MRI right now it would show activity.
Option
2: Keep taking the Tecfidera (my current DMD) and find out how long I can
fundraise. Can I just raise funds for the next two years and reapply if and when
I have the relapses necessary? Will the study even still be there? Is this
process ever going to be just an approved treatment option instead of a trial?
Should I put my focus on trying to rally support for approval from the FDA?
I just
don’t know. It’s a lot to think about. Input is appreciated. What are your
thoughts? What would you do?
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