Nurown update

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Ulf

Member
Joined
Jun 12, 2019
Messages
10
Reason
DX MND
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
ceo will update next Tuesday
 
I know this will not be the answer for everyone, but knowing it could be the answer for some is good enough.
 
Vincent expound on your statement please? What am I missing? NurOwn was approved for distribution in Scotland.
 
What do you mean approved for distribution in Scotland? Scotland is still part of the UK and has the NHS. Until very recently UK was part of the EU. As far as I know Nurown isn’t available there at all. Honestly, if it becomes an approved treatment it is going to be a big battle to get the NHS to pay. They have a calculation for expensive medications where the cost per added 6 month of extra quality life has to be below a certain amount
 
No country has agreed to reimburse the regimen, nor should we expect anyone to approve NurOwn [and remember, that's not the same as access] before the current trial is completed. The current dosage regimen of multiple treatments wasn't tested in earlier trials (which only used a single treatment), so both safety and efficacy have yet to be established.

As for Scotland, the government simply acknowledged that it's a promising option. Dee Dee, you can't believe everything you read in advocacy group discussions. Or rather, you can believe what you want, but please don't cut and paste it here, where we try not to dangle false hopes.

If I wouldn't advise you to try a $25 supplement without a basis for it, and understanding potential adverse effects and interactions with your other conditions and treatments, then how could anyone advise that for a ~$300,000 per treatment regimen that involves harvesting, manipulating, and re-injecting stem cells into your spine, at least three times?
 
brainstorm will have 10 patients/year according to nurown price
 
Thanks Laurie, this is why I prefer these forums to most FB groups. Fact checking.
 
FaceBook, (FB).... put your brain at risk. And... your privacy.

Just local here too.

Recently there were two FB news stories concerning the Winston Salem Police Dept. in
North Carolina. Both were actually stories of two different cities months ago.
The best they could trace it back to was.... Russia.

My own experience.... someone posing as my daughter sent me messages supposedly
in need of help. My daughter knew nothing about it.

I know this is taking away from the topic but.... please take ANYTHING you see on FB
with a grain of salt.
 
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The article I read was put out by the SMC outlining the political positioning. They have gone on to outline 500mnd cases in Scotland would be covered by the NHS as well as 5000 in the UK. I don't particularly like the politics as all . The article was released February 16,2020 They've also made it available in other languages.
 
I do not find it on their website. Not by looking under approved, not by looking under under consideration. Not by searching the date you gave not by searching the name. Can you please give a link to the document you see as I can not find it
 
Lots of governments will say in theory if it's safe and effective, they will cover it. When the rubber meets the road, there will be limitations, as anyone who has received NHS care knows.

Here, no one with health insurance that approves it will pay the full boat, it will be like doctor's visits and hospital stays.
 
I can’t find any updates about how Matt Bellinski is doing w/his Nurown treatment. Does anybody know? Can’t even find him on FB.
 
He is on facebook. His name is Matt Bellina
 
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