Lupa F

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.

“Living with SMA has helped me become strong, compassionate, resilient, and creative.”

You don’t think you would have had those qualities without SMA? I guess it feels like you’re saying SMA is a good thing because without it you wouldn’t have those qualities and I don’t believe that’s true. I’d never tell a child diagnosed with SMA to not take…[Read more]

This reminds me of a bit of controversy about some dialogue in a recent Game of Thrones episode. One of the female characters said she’s a stronger, better person because of some horrible things that happened to her. It was rightly called out that that is a terrible message to send, that these awful things were necessary to make her as capable as…[Read more]

It wasn’t confusion. The author is wrong saying it was tested on types 2 and 3. It wasn’t. It’s the same trials they’ve been doing on type 1. So the author mentioning types 2 and 3 could confuse other people into thinking they’d expanded the trial.

One other thing about these results. They’re using the HFMSE to evaluate type 3s. If it’s the same test that they have me do during my 6 month evaluations, it doesn’t really work well for type 3. Even before I started Spinraza I was able to complete about 80% of the tasks, with my stronger arm able to do everything they asked. It doesn’t leave…[Read more]