The latest on the Friedreich's ataxia drug

The drugmaker has a special program, they say, to ensure everyone who needs the drug can get and afford it.

I worked with them and my local doctor to get it prescribed, and a few days later, I got a call. (Actually, Mom did, because I can’t hear on the phone.) 

Good news, your insurer approved the purchase of the drug, they said. Oh, and your co-pay will be $6,000 a month.

But don’t worry. We have a co-pay card, which will help. We’ll send you info.

On reading about the card, I saw it had an annual maximum meaning it will help for 2 and a 1/2 months before running out.

Back to the affordability program: Is this for real? we essentially asked.

Yes, they said. What you need to do is use the drug for two months  with the co-pay card, then call our financial aid department, which is different from us. They’ll see what we can do.

This situation raises two thoughts in my head, neither of which endear drugmakers to me:

1. They want to hook you on the drug. I don’t mean addicted. I mean that after two months you can’t bear to think of life without the drug, so you’ll pay anything.
2. They are totally setting the monthly price by what you earn.

A friend of mine works to get drugs approved and into people’s bodies. She is kind, smart, and passionate about helping people. I am trying to make her who I think of when I think of the pharmaceutical industry.

Dora’s got nothing on me

 Unlike, say, SpongeBob SquarePants, I can’t say I am a fan of Dora the Explorer, which is probably OK with the creators. They weren’t trying to attract adult males, I expect. I would, however, watch a Boots the monkey show.

My niece used to watch it, though, so I’m familiar with it.

At some point years ago,  when her kids were little, my sister would sing Dora’s “We did it” when helping me. 

Lately, I find myself singing it to Fame after I do anything. Granted, any time I do do something, or  even without requiring a trip to the ER, it’s worth singing about.

Writing while standing

This is going to be short because I am writing while standing.

I think I’ll figure put how to type OK in time, but for now it’s slow-going.

I'm not a good typist anyway, and this is more awkward.

I am using my new electric desk riser, which works well, and I am standing!

Sleep therapy stinks

If I were to choose a week to represent my first quarter efforts at sleep therapy, it would be last week.

Last week, I wore the mask four hours or more for five days. This is moderately better than the past 90 days when the average was about 62%.  February was bad, which brought down my totals.

Similarly, my five hour a night average for all nights in Q1 was weakened by February. This week’s 5.5 hours is probably a better gauge. It is still lower than the 6.5 hours my doctor wants.

Only one night was a good fit. This means the mask did not leak badly, usually when I move while asleep. I got a grade of 79% this one night, a grade that would horrify me if I got it in school. Not much I can do about it, though, because I am asleep.

Restless legs remain the worst issue, and they were why I didn’t sleep much Sunday or Monday (with or without the mask).

On Tuesday, I fell asleep nearly two hours earlier than normal, with the mask. I also woke sup nearly 1.5 hours early with violent restless legs. I eventually used the lift to get on the floor for 30 minutes and pet Fame.

I hate sleep therapy.