Status
Not open for further replies.
I would like to correct a misunderstanding here; the cost of NurOwn is NOT estimated to be $300K.
Earlier @Par220 posted an informative article which included the following quote:
"Lebovits declined to estimate the cost for NurOwn beyond saying that cost of manufacturing and delivering the therapy is similar to CAR T cancer therapies. Yescarta, a CAR T therapy from the Kite Pharma Inc. unit of Gilead Sciences Inc., has a wholesale acquisition cost (WAC) of $373,000."

1. This is a different therapy, not NurOwn. The CEO mentioned in passing that the cost would be similar, but he mentioned two different companies that are still not in production yet, and did not specifically mention Yescarta. Yescarta is an example picked by the article's author not the CEO.
2. The "wholesale acquisition cost" has not much to do with actual cost of production for a drug/treatment. $373K given is based on a drug that is not fully in production, it is provided on a limited basis. Once a drug goes into production, based on fixed costs there are a lot of economies of scale and the per unit production costs will decline dramatically.
3. This still does not tell us much about "pricing". As said, Brainstorm has been in operation since almost 2010 and it has large amount of costs to recover.

For all these reasons and many more, I do not think we should discuss pricing until there is clear information on the subject. Speculation will only lead to misinformation and will further upset readers.
 
i'd play russian roulette with revolver 5/6 bullets for half money.
@karen, if it is not sad, it would be very sad. brainstorm's marketing shouldnt be transparent with nurown that way. they should have been quite. nurown is for certain population. dozen per year. for us, living corps, hope is enough.
 
Jethro, may I ask - one post you said you have 2 children, I think 8 years and 1 year. Another post you said you have 1 child. Then you often say you have no family?

I'm so sorry for your high distress, we do understand as every one of us here are facing, or have faced with a loved one, the very same disease xxx
 
@oya thanks for clarifying. anyway, wa are talking about space borders... 200k or 2million is the same for me. i know that stem cell treatment brings bulk of benefit, not just als treatment.
unfortunatelly, it is not xanax, so there's no option to buy generic nurown. you will buy know-how.
little light in tunnel is that radicava is proclaimed to be at the cost of app 140000 usd/year, and you can buy year dose for less than 5000 usd without administr.
generic drugs and nurown are two different worlds.
don't know what to say, think...
 
@affected, you are correct. i have two kids, 8 yo and 1yo. i was maried 2006-2012. i'm divorced and i live alone. girl was born in feb. 2010. i had a relationship for a few days and it turned as an affair/conflict. little girl is born in feb 2017. that woman doesnt want my older daughter to see her sister, just wants me to pay alimentation, and she doesnt allow me to see baby (now) old 16 months. she run away when she heard about my dg.
my ex wife will get maried soon.
do i have family? if yes, who makes my family? older girl adores me and she is my family. i have to take care of her.
when i say that i have family, people often say: let them help you. to be honest, my ex wife helps me sometime and we have good relationship. i can not say that for mother of my younger child.
i think that every phase of my health status, life and every detail i have to explain. nothing is normal in my life.
 
There is a huge gap between "wholesale" (what Medicare and Medicare Advantage plans pay) and the "retail" that they base reimbursement contracts on. In the case of NurOwn, costs include evaluation for eligibility, marrow collection, harvesting the stem cells, preserving the marrow, delivering the cells via injection, and repeating the post-collection process multiple times (if the latest protocol provides the most efficacy as per the hypothesis of the Phase 3 trial).

Neither price is really important to you, if you have Medicare or other coverage, which the vast majority of PALS do, once the therapy is approved.

If we are talking about RTT, I would think that on an ethical level, we would talk about the placebo-treated patients in the trial potentially having access, before discussing anyone else (though in the real world, as I said earlier, I don't see that happening).

More pragmatically, the "actual costs" on a cash basis [many of which would be incurred by health care facilities, not Brainstorm] would appear prohibitive for all but the very wealthy, under any scenario. It is a matter of professional time, facility hours, etc. and procedures that involve biologicals, a high logistical/regulatory burden.

We can talk all day about imaginary rack rates for a protocol that hasn't even been tested at scale, but the regulatory cycle is the real key to availability.
 
thanks jethro, didn't want to hijack the thread, but I have enough trouble remembering details about individuals here, so when it seems different things are being said I get so easily confused.

I don't know what normal is, you wouldn't believe some of my 'family' connections ;)
 
Here are two twitter posts from the FDA commissioner yesterday which one would think could apply to Nurown:

Scott Gottlieb, M.D.

@SGottliebFDA

For serious conditions with small patient populations (rare diseases) a single trial may be accepted to show safety and efficacy, demonstrating clinical benefit. This has helped result in approvals where there were previously no satisfactory approved drugs

For life threatening diseases, often where there's no effective therapy, #FDA may use surrogate endpoints to advance market access - such as measuring tumor shrinkage in a cancer trial - and require confirmation of long term benefit in post market studies
 
maybe it will be interesting for someone (10/2017):
"Before becoming generic, Riluzole® cost $50,000 per year and was shown to only extend survival of ALS patients by two to three months. The results previously reported by BrainStorm indicate that NurOwn® may be able to slow down the progression of ALS, and for some patients it may even lead to disease stabilization. Multiple doses of NurOwn® could increase these effects. We are conservatively modeling for NurOwn™ to cost $100,000 per year and continue to believe that upon approval NurOwn® could generate peak revenues of over $1 billion. Our current valuation is $15 per share. "
 
The use of single trials and surrogate endpoints has long been accepted in rare and fatal diseases, not to mention that Radicava was approved in the US despite all the trials being among Asians.
 
If you indeed have RTT, what kind of the best drugs/ therapies you are willing to try ?
Better we should talk about other options for RTT, not only NurOwn that I believe not easy to access at all.

Anyone know what kind of stem cells Steve Gleason used ? I believe he never use fake one !
 
As has been mentioned here, reportedly Steve Gleason's condition worsened following stem cell treatment.
 
Last edited:
as far as i know, everybody who used stem cells in EU clinics, already died, or symptoms got worsened.
exception is ted harada, but his reversal is supposed to be result of total anesthesia, not stem cells. weird, ha? he died 6 years later after als diagnose (brain tumor or so, not als).

nurown is exception. bstorm process stem cells, and that is something completelly different.
price shocked me, and i wonder if there's any use at all to be present here.
all my ships sinked. what is man without hope? living corp. i ordered radicava trying to maintain my body with progression as less as possible to survive nurown. no use to spend any cent anymore...
 
Last edited:
In US there is SearchLight to help with Radicava payments; it would not surprise me if another entity would help those who cannot afford it with NurOwn payments; if and when FDA approval comes along.
Again, I am sure there are alternative payment help agencies/charities in EU to help pay with expensive treatment options for patients with fatal diseases.
 
it sounds like comfort... but if price will be like that, maybe there are just few thousand people (football players, etc...) who have money to pay that. enough for brainstorm. there are people over 80 who will pay that thinking that it is rejuvenate process (and it is!), and they will gain 10 years life extra. finally, brainstorm is not charity. they paid enthusiasts and invested in knowledgement to work out their project, and they will do it. who cares about als affected who can not pay? as it has always been, all benefit (if there will be any) will get those who shout too much.
i don't know how in usa you call people who were born, have ID, die for someones ideals, nobody ask them anything, they never say anything, they die somehow and nobody knows that they even lived.
we call it "cannon's meet."
i said everything.
good luck to all!
 
Status
Not open for further replies.
Back
Top