Friday, February 8, 2013

A chance

I've been on Ampyra for over 2 and a half years.  If you look back at many of my previous posts, they may well qualify for an Ampyra commercial.  Ampyra is thought to help the walking ability for one in three people with MS.  It went through extensive clinical trials, in part to determine the correct dosage.  It was shown, basically, to increase the speed of walking on average by 25 percent over the course of 12 weeks.  That was the trial.  Drug approved by FDA.  The end.

25 percent doesn't sound like a lot.  But reconsider...  this was for the entire sample of people.  We're hearing that Ampyra works for 1 in 3 people.  Thinking generally, if that is the case for Ampyra, then if you do some pretty basic and not FDA-approved math, you're really finding that, for the people for whom Ampyra works, it improves their walking speed by 75%...  over the course of 12 weeks.

What happens after 12 weeks to those people?  MS is very individualized, so every person is different.  For me, I could only walk about 25-50 feet before Ampyra.  After 4 months, it took me about an hour to make it around a track (which is much further than 25-50 feet!).  This fall, so about 2 years after starting Ampyra, I was under 20 minutes around a track.

But what was not tested?  What was not tested was everything outside of leg muscles.  If Ampyra fixes connections to make leg muscles work better, then it makes sense that Ampyra will help other muscles be stronger as well.  And for me, this is true, but an actual clinical trial can only test a limited number of things.  So I have stronger core muscles which is very important.  I have stronger hand muscles so I can now write.  If you think of any muscle, it's stronger.  Beyond that, unexplained, is I haven't had an MS exaccerbation during that time, and I've only been sick once.  My mom remembers when I would have exaccerbations - the fatigue, the falling, and how tough they were mentally.  I don't tend to get sick, but since Ampyra, I have had a lot of stress at times and still managed to stay healthy.  There is something there.  For me, for now, the course of MS has been reversed some...  well, 75%...  I am 75% better than I was, but I still have a long way to go.

It's probably because, as I've said previously, my MS is different (everyone with MS will tell you the same thing - theirs is different).  I've never had brain lesions.  I had two spots of lesions on my spine.  One of those spots is gone.  The other lesion area is small.  Yet I have so much trouble walking - it must be the broken connections that occur on conducting nerves, as a results of the lesions.  Those broken connections are where Ampyra works.

I've been on Provigil for longer than that...  I don't know how long.  Provigil has been studied in MS with mixed results.  It is thought to improve energy in people with MS.  For me, it has done just that.  I believe that the combination of Provigil and Ampyra may be part of why I am doing very well.  When I forgot to take Provigil one day, I couldn't stay awake.  Other bad things happen if I don't take it for a couple days.  Provigil recently went generic so it is a lot cheaper now.

Some insurance companies cover Ampyra.  Some do not.  Some insurance companies cover Provigil for MS.  Some do not.  If you have to change insurance companies, it can be, well, I am speechless.  One company may cover Ampyra for MS, the other may cover Provigil for MS, and neither may cover both.

It's fascinating... the combo of 2 drugs has, I believe, altered my life completely.  I'll find a way for it to work, to get both drugs, but when someone has been two drugs for so long, it's hard to imagine that those drugs wouldn't be covered (maintained), or that there wouldn't be some kind of mandate about coverage.  I'm all for mandating coverage for contraceptives, but what about other things?

And if we're talking medical necessity, I can think of a bunch of drugs that are not medically necessary, but that are covered by both insurance companies.  So that argument doesn't hold.

I believe that everyone deserves a chance.  There are other insurance companies that do not cover Ampyra.  So other people don't get the chance to try it - even with my current insurance company, my doctor had to push a bit.  And it's a lot less expensive than many other MS drugs.

I was getting my wheelchair fixed the other day.  As I was waiting (for 45 minutes), a woman was in the store talking about her power wheelchair.  I wondered what her story was.  What seemed clear to me is that she was extremely obese and was currently in a power chair.  The questions she asked led me to believe that she likes to stay in the chair as much as she can.  She hasn't used a manual wheelchair for a long time.  She is on Medicaid.  Her current power chair was $15k.  Her new chair will cost $22k and I am assuming Medicaid will pay for this.  She was on oxygen.  She had 2 hips already replaced and needed another one, but she is not healthy enough to get one.

What was her story? How did she get to this point?

As I was about to leave, I heard her say, "I have MS."

Before she got to where she is now, assuming her obesity came after MS, what if she had Ampyra?

I know that may be a long shot for improving where she is now, but what if she wanted it and insurance hadn't covered it?  What if she had been someone like me, and it would have worked?  Wouldn't quality of life have been a lot better?

I know I'm inserting a lot of assumptions here, but doesn't everyone deserve a chance to be the one in three where Ampyra is a miracle?  If it doesn't work, people stop taking it, because the side effects are not fun.

I'll figure out a way for everything to work for me.  But I'm thinking...  I got a chance.

Doesn't everyone deserve a chance?  How can we get people a chance?  How do we assure that, if they move between insurance companies, the good things remain intact?

If we cover other drugs that do far less, if we mandate coverage for certain drugs, free preventive screenings, etc., then what about this?  What about quality of life?  Are we considering that?

Doesn't everyone deserve a chance at increased quality of life, a chance at a life turned completely upside down, flipped, turned this way and that, but in a completely unexpected, miraculous, amazingly good way?

I believe they do.

So now what?


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