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Nikki J

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Oya I don’t know if you meant to sound as if Searchlight is a separate charitable entity? It is not. It is a program run by the Radicava manufacturers to promote access. There is some provision to help financially those whose insurance was inadequate but it is more about facilitating insurance approval and getting access to infusion centers.
 

oya99

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I meant that Searchlight has a provision for those that qualify to pick up either a portion or all of the Radicava costs. They certainly do not cover the costs for those who have insurance which agrees to payments or for those who can pay for Radicava through private funds.
My point is that there are some resources available to those who have no means to pay for Radicava.
Thus, there is some hope for everyone even though they may have no resources themselves.
I hope that kind of hope extends to the discussion about the affordability of NurOwn.
 

KarenNWendyn

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There are no guarantees of a program for defraying cost of Neurown. It is premature to speculate, especially when the treatment hasn’t even been approved yet.

Oya, are you in the medical profession, pharmaceutical industry, or biotech? Your profile states you are a caregiver for someone with ALS, but it would be nice if you could introduce yourself, maybe in a new members thread. Thanks.
 

lgelb

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Oya, I'm confused by your insistence that people in the US will need help to pay for NurOwn. If it's on the market, it will be pretty much incumbent on payors to reimburse it for PALS, just as is true with Radicava, so long as the PALS meets the eligibility criteria. You have stem cell transplants covered in hematologic diseases today.

What other kinds of scenarios are you thinking of?
 

oya99

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I am not sure why what I wrote came across as insistence on PALS in US needing help with NurOwn payments.
My post was a reply to @jethro who was worried about having the means to be able to afford it. I gave Searchlight as an example and said possibly such help may be available in the EU for NurOwn. The post is meant to encourage to stay positive as there may be hope rather than assuming that there is no hope. My post is not meant for US patients in general.
 

oya99

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There are no guarantees of a program for defraying cost of Neurown. It is premature to speculate, especially when the treatment hasn’t even been approved yet.

Oya, are you in the medical profession, pharmaceutical industry, or biotech? Your profile states you are a caregiver for someone with ALS, but it would be nice if you could introduce yourself, maybe in a new members thread. Thanks.

Both my husband who is a PALS and I are in academia, not in industry.
I am sorry, I did not know all posting members needed to introduce themselves in a new post.
 

lgelb

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Ah, I see, Oya ... and BTW, welcome. An intro is not a requirement, just helps us get to know you. I'm ex-academe myself.

Realistically, there is not going to be ready funding support available ex-US. For example, patients in the EU often have difficulty even getting the latest chemo/immunotherapy for cancer, depending on, say, which NHS district they are in and how much that district is overspent, and biopharmas don't launch in every country as it's too pricey. Asia often has a very different set of options available, and South America often has very uncertain access to therapy owing to lack of infrastructure.

Thus, you get medical tourism, none more than to the US. Certainly, crowdsourcing is always an option, and as the tech diffuses the price will come down.

We all try to reassure each other, but I don't want to provide false hope, either.

Best,
Laurie
 

mbg1977

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the phase 3 trial in us seems not going well . there are no good news . the trial started long time ago and people already have second infusion
 

Nikki J

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Supposedly someone reported improvement. It got a lot of press and was all over facebook. Every trial I know of though tells people they are not allowed to discuss their perceptions while the trial is in progress so I am not sure silence means anything
 

lgelb

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The CEO has walked back any previous statement relative to RTT participation.
 

KarenNWendyn

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Thank you Laurie for this link.

I find it interesting that the author of this article, Adam Feuerstein, is a senior writer for Biotech with no financial interest in NurOwn, and he says the following:

“there’s little evidence that ALS patients, especially those with advanced disease, will benefit from NurOwn. In BrainStorm’s Phase 2 study, NurOwn was unable to slow the progression of ALS compared to a placebo. The company turned to a responder analysis to eek out a signal of efficacy, which it’s now trying to confirm in the Phase 3 study.”
 

lgelb

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This is the latest abstract, I think, and the fuller company deck. The post hoc analysis excluded "slow progressors" [as defined by ALSFRS-R decline] in the service of publishable results/FDA approval for Phase III, which makes me think more about a regression-toward-the-mean phenomenon, since we know most PALS have a point after onset where their progression slows down a bit before accelerating again, and we have talked about that as reflecting that a lot of neurons die before you see immobility.

That said, we should keep in mind that efficacy is being measured on the ALSFRS-R scale -- a categorical scale that has such little relevance to differences between PALS that it typifies the worse kind of health outcomes measurement (the latter statement my editorial comment only).
 

Par220

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Devastating to see this from a new Right To Try law inspired by primarily ALS patients and with the President specifically referencing Brainstorm when signing it. Sad day.
 

lgelb

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As we discussed, this was a symbolic law. The FDA already has a compassionate use mechanism in place. Funds are the real issue.

No disrespect to Mr. Bellina, but a bit disturbing to see the "squeaky wheel" method of funding a N=1 trial, in effect. It is grandstanding.
 

Cherise77

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My Dad is thinking of doing phase 3 trial of NurOwn as he meets the criteria but he can’t be on Radicava while the trial is taking place (11 months). What is the opinion of PALS taking Radicava? Is it worth the risk of waiting 11 months to use? His onset of symptoms was almost 1 year ago.
Also has anyone had success going to Israel to pay for NurOwn? Is that possible for Canadians?
Thanks for you advice.
 
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