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Holy Fuck
Jan 8, 2017 19:07:48 GMT -5
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Post by darthoso on Jan 8, 2017 19:07:48 GMT -5
I wonder if this explains Spinraza's price tag of $125k a dose, they might be trying to make as much as possible as fast as they can before this oral drug is approved. Once approved no one is going to opt for the spinal injection.
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robin
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Holy Fuck
Jan 8, 2017 19:50:24 GMT -5
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Post by robin on Jan 8, 2017 19:50:24 GMT -5
so is this a one time injection or a monthly treatment
i hear a lot of buzz here in the Netherlandstoo and I am curious
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Holy Fuck
Jan 8, 2017 20:04:48 GMT -5
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Post by darthoso on Jan 8, 2017 20:04:48 GMT -5
so is this a one time injection or a monthly treatment i hear a lot of buzz here in the Netherlandstoo and I am curious You need 3 doses spaced out 14 days apart, a 4th the month after, then 1 every 4 months ongoing. So 6 in year 1, 3 every year after.
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Q
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“Follow your bliss." Joseph Campbell
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Post by Q on Jan 9, 2017 20:13:07 GMT -5
I wonder if this explains Spinraza's price tag of $125k a dose, they might be trying to make as much as possible as fast as they can before this oral drug is approved. Once approved no one is going to opt for the spinal injection. The same thought crossed my mind as well. RG7916 is just beginning it's phase two trial so it will be awhile before it's approved. If it's approved. I have read Biogen has financial assistance for any patient whose insurance won't cover it. It's the copays and ancillary expenses that will add up, but much less than $750k.
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Post by darthoso on Jan 19, 2017 17:25:52 GMT -5
Welp, got a call from Duke that they had a cancellation for 9am tomorrow, instead of May. So I'm currently in a hotel in Durham. Should know more tomorrow about this thing.
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Post by newjess on Jan 19, 2017 21:48:16 GMT -5
Welp, got a call from Duke that they had a cancellation for 9am tomorrow, instead of May. So I'm currently in a hotel in Durham. Should know more tomorrow about this thing. Holy shit darth!! That's awesome! Are you going to stay in Durham tomorrow? Sending you a PM!
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Post by darthoso on Jan 20, 2017 18:23:14 GMT -5
Holy shit that hurt! Jk.
First of all, Duke has too much money. It's stupid how gorgeous everything was.
So here's the low down.
First thing you need to be genetically diagnosed with SMA and have the right gene. I was diagnosed via muscle biopsy in '89, not genetically, so there could be a surprise. I got a blood drawn while there and will know in a week or 2.
As for the drug itself, Doctor I saw is heading the review committee that's meeting next week to decide if Duke will be a treatment facility. It's the most expensive drug they've ever considered for their pharmacy. He's also got the State's best Neuro Radiologist and Cancer Center on the committee too since they do these kind of spinal infusions all the time. If that Neuro Radiologist can't get a needle in due to a spinal fusion, nobody can. They could explore surgery to drill a hole... He thinks they'll be up by April giving the drug.
There is another treatment in the pipe that's a one time IV infusion that's a virus that "infects" you and adds the SMN1 gene (which SMAers are missing) to your DNA. Since the virus works at the DNA level and Spinraza works at the SMN2 (backup gene)'s RNA level (basically hot wiring the backup gene's RNA to produce more protein), they can do both: add the missing gene with the virus, and use Spinraza to amplify the backup gene. Apparently some people have SMA but never know it since they've got multiple backup genes they never show symptoms.
Results in adults, he thinks it might restore some function but he's just inferring.
Cost.... based on what happened with the DMD drug, the doctor thinks the private insurance industry will tell Biogen to go fuck themselves but Medicaid would cover it.
Good trip, glad I did it.
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Holy Fuck
Feb 9, 2017 20:13:28 GMT -5
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Post by darthoso on Feb 9, 2017 20:13:28 GMT -5
Update!
Good (?) Personal news and bad news.
I have SMA! I'm missing the SMN1 gene and have 3 copies of SMN2 (the backup gene) which is very common for those with SMA II. Duke as also accepted the drug into their pharmacy. I've been referred to the neurologist who's in charge of the drug for adults (not the guy I saw unfortunately). They're still figuring out how to get this into spines, but apparently other hospitals are playing around with mid spine injections and through the top of the skull.
Bad news: 2 insurance companies (United Health and Anthem) have issued their policies. UH has approved it for types I-III (not 4) but will only pay for the first 4 injections, after that they want proof it works from your doctor. Anthem has the same policy but is only going to cover type I and requires atleast 2 copies of the SMN2 gene. No word on BCBS (my insurance) or if it'll be up to the States or Feds regarding Medicaid. These policies might change if better data is released.
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Post by Mets on Apr 20, 2017 11:37:54 GMT -5
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Post by darthoso on Apr 20, 2017 11:46:59 GMT -5
I'll be adding this to my list.of links to shame Medicaid and BCBS.
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Post by Mets on Jan 17, 2018 22:37:59 GMT -5
Your boy just did some very expensive drugs
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krissnap
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Post by krissnap on Jan 18, 2018 4:51:59 GMT -5
Your boy just did some very expensive drugs How'd it go? I'm currently in the process of getting approved, and waiting for the University of Washington to begin dosing people.
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Holy Fuck
Jan 18, 2018 7:47:27 GMT -5
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Post by elbs on Jan 18, 2018 7:47:27 GMT -5
A bit of a tangent, but what do you think of the awareness campaign 'smash SMA' mentioned in the news story? It seems iffy to me in a couple ways:
a) 'smashing' is pretty violent imagery for something describing someone's body, and
b) the activity done to raise awareness is something that a lot of you might not be able to do, so it's excluding you from something being done for your benefit
c) smashing random objects doesn't really have anything to do with SMA and doesn't teach people anything about SMA
I'd be interested to hear what your thoughts are about that. Do you wish they'd used a different campaign? Or am I seeing problems where there are none?
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Post by malibu on Jan 18, 2018 7:53:00 GMT -5
There is another campaign called "Fuck SMA", it is my favorite
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Holy Fuck
Jan 18, 2018 9:31:56 GMT -5
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Post by darthoso on Jan 18, 2018 9:31:56 GMT -5
A bit of a tangent, but what do you think of the awareness campaign 'smash SMA' mentioned in the news story? It seems iffy to me in a couple ways: a) 'smashing' is pretty violent imagery for something describing someone's body, and b) the activity done to raise awareness is something that a lot of you might not be able to do, so it's excluding you from something being done for your benefit c) smashing random objects doesn't really have anything to do with SMA and doesn't teach people anything about SMA I'd be interested to hear what your thoughts are about that. Do you wish they'd used a different campaign? Or am I seeing problems where there are none? My personal feeling on subjects like this is that those issues are priority #846, especially for the SMA community now that we've got a drug approved with more in the pipeline. Our energy has to go into ensuring access to those treatments (most of Europe is being denied access). That means lobbying, letter writing campaigns, and other forms of activism. Policies can be changed, a lot of states initially had very restrictive policies (both Medicaid and private insurance) but have since reversed those policies after the community went to war with them. Regarding "smash", most sma parents would be thrilled to see their kid smash something.
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