Lupa F

I found this: https://sensel.com/products/the-sensel-morph?variant=12197272944719

That kind of the idea?

Have you seen the Microsoft accessible controller? https://www.microsoft.com/en-us/p/xbox-adaptive-controller/8nsdbhz1n3d8

You can pretty much connect anything you want to it and program it however you want.

Well supposedly it got fixed today and it’s off to insurance now, so we’ll see how that goes. But that was a two and a half week delay for no good reason.

Update to my attempts to get a chair: So I did all the evaluations, got all the paperwork signed by my doctors, everything seemed set. The wheelchair rep said she just needed a copy of my home eval (checking door widths and everything, my place is fine) and we were set to submit to insurance. I told the rep we did that eval the other day and she…[Read more]

Closest I came to one was maybe for my 3rd or 4th dose when at the hospital they gave me a pillow for my head while I was laying down waiting to be allowed to go home. After a couple of minutes I could feel a headache coming on, but I took the pillow away and it mostly went away too so now I don’t let them give me a pillow.

I do feel sort of…[Read more]

The main nerves that get affected by SMA are there from birth so that’s one reason it possibly works well no matter what size you are. I wouldn’t mind trying a higher dose though to see if that feeling that it’s sort of wearing off as the next dose is coming up might go away even if it doesn’t do anything better the rest of the time.

But I really…[Read more]

Apart the from the fact that he defrauded the government, it’s a nice story.

Medicare does cover it, I was told they cover anything approved by the FDA. But if all you have is Medicare, be aware they only cover 80% of the cost (it’s covered under part B, not D) and you’re supposed to be responsible for the remainder. My hospital actually bills like $560,000 per dose which is then “negotiated” down so they only pay…[Read more]

What were the reasons you all were getting denied? I can’t believe there would be actual medical reasons they’d be denying you.

And I don’t know how many of you are old enough to remember the commercials for “The Scooter Store”? They’re the ones that caused these things to be so hard to get. They scammed millions of dollars by getting scooters…[Read more]

Thanks.

I’m trying to get a permobil M3. I’ve been using regular mobility scooters from Pride up until now (I’ve used like 4 different types), but now that I haven’t walked at all in years the scooter seat has been causing me some problems with more contractures in my knees and some pressure soreness on my butt. I’m always sitting in the same…[Read more]

I guess I should clarify about my Medicare experience. I have a Medicare Advantage plan, so we’re dealing with a regular insurance company, not Medicare directly, that’s where the problems are happening.

Zolgensma isn’t going to be any different than Spinraza in that regard, Rachel. Neither one works on the nerves directly, both try to create more SMN1 which stops further destruction of the nerves, they just do it in different ways. The primary issue with Zolgensma and adults is how the virus they’re using to provide it works with an adult’s…[Read more]

From https://www.cnbc.com/2019/05/24/fda-approves-novartis-2-million-spinal-muscular-atrophy-gene-therapy.html: “Insurers were going to cover Zolgensma no matter the price, and Novartis has spoken publicly about considering prices that approached $5 million,” ICER President Steven Pearson said in a statement.

“Do you think it will be approved for older patients with types 2 and 3 this year? Next year?”

Because it’s supposed to be a one-time treatment, I think they’re going to need longer term data on older patients to make sure it’s still effective years down the road so I don’t think it’ll be approved any time soon.

“Does its price ($2.125 million…[Read more]

My injections and labs for each dose end up costing about $4000 or so I think on top of the Spinraza cost, but I don’t have to have anything special done since I don’t have any spinal fusions or rods. To make that $4 million over 5 yeas number correct, each dose would need about an extra $100,000 added on for the procedure which even in the worst…[Read more]

There’s an error in the article when it’s comparing costs. It says “Novartis pointed out that chronic injections of Spinraza cost more than $4 million over five years” which we know isn’t true. Even counting the most expensive first year, it adds up to $2.25 million. Either the author misquoted Novartis or Novartis is using different numbers, but…[Read more]

I was actually surprised, in a good way, at the price. I was expecting it to be much closer to the $4-5 million range that had been first suggested. At $425,000 per year for 5 years, it’s close to Spinraza’s price when you factor in the costs of the procedures every 4 months, and then there’s nothing beyond that which makes it significantly more…[Read more]

Just the name Zolgensma has been approved, the treatment itself has not been yet.