What price do you expect for a cure?

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jethro

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many plas "pray for a cure" forgeting that price can be enormous.
what do you expect price to be, oral, not cure, but prolongues lifespan up to 30% and slows down progression?
 

Nikki J

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It would depend what it is. The one time prevention treatment for sma ( that may need a booster eventually but certainly last years) is about 2 million US. On going treatment would be less per dose but eventually more. A year of the recurring sma treatment is around 850k for the first year and then 300-400k annually ( I think these are right I am going from memory)
 

GXTrex

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@Nikki J

I came across that info also for sma as well. That is the total treatment cost, not what the patient pays after insurance? Surely insurance would have to cover a lot of it?
 

Nikki J

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Total cost. how the system can absorb it, what discounts would be negotiated I don’t know. In ALS sod1 will go first almost certainly for treatment and prevention
 

GXTrex

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Are there reports on the estimated cost of the SOD1 treatment? Is it a one time or yearly treatment?
 

lgelb

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Yes, the insurance plans that approve it will bear much of the cost. But it likely is not available in all countries due to the cost, and approval criteria for higher-cost treatments are more constrained than a $4 tablet in all countries. So citing the cost is relevant from the access perspective.
 

Nikki J

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The first sod1 will be recurring like the second sma scenario. Both are biogen. Dr Brown has dosed 2 people with a sod1 one time drug and a trial should be starting this year.
 

jethro

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you can not compare nurown to supplement derived oral drug.it is pretty wide price area. rilutek, up to last year one and only had a price of 5000 usd/month in 1995. now is app 120 eur/month.
radicava?
 

lgelb

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Rilutek has "gone generic" and is now available as riluzole; thus, the lower price. In the US, exclusivity periods are generally no longer as generous as formerly, but Radicava has a ways to go. Also, drugs that must be infused (though an oral form of edaravone is in development) are always more costly treatments because of the labor involved in production, distribution, storage, and infusion.
 

jethro

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yes, agree abot form. that's why i asked about oral drug, targeting arimoclomol. but it doesnt mean that cheapest form wil leash producer and his hunger. in my country, one girl granted "free" drug for sma wich is most expensive drug on tha market - 2-3mil usd. nurown was, as chaim said, app 400k usd. rilutek was a peanuts/tip compared to these ammounts. first we pray for drug, and now we will pray for affordable price.
 

lisa g

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Depending on insurance the price of the drugs vary. For example I carried Humana HMO for years. The price for my Riluzole was $195.00 for a three month supply. When we retired we had bought a second home in Ohio. We needed to change insurance due to that the HMO would only cover us in the Florida area and not when we were in the state of Ohio at our other home. My husband and I are retired federal employees so we were able to keep our insurance and have the option of changing plans every open season. We switched to NALC(National Association of Letter Carriers) its underwritten by Cigna. I now pay $10.00 for a 3 month supply of Riluzole.

Radicava infusions are a whole different thing. In Florida I am charged over $7,900 per infusion. In Ohio I'm charged alittle more than $2,900 per infusion. Big difference right? We inquired why there was such a difference in the pricing. Apparently while I'm in Florida my infusion center is attached to a hospital so I'm charged their pricing yet when I'm in Ohio I go to a free standing Cancer Infusion center. Crazy right? Either way between Medicare and Cigna I pay $0
 

Nikki J

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are the radicava prices you quoted what your insurance pays or what the charge is? So often the charge is greatly reduced by the insurance. I can see the difference in location probably allows different charges but wondering if it is what you quoted. I always look at the charge and what was actually paid. I had one blood test that the charge was over 5500 and paid was 500. It gets even more complicated as allowed rates for the same service in the same place are different with different plans Here there are three private plans that are fairly generous other plans and medicare less so and medicaid least of all.
 

lisa g

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I have just pulled out my EOB's from Medicare and Cigna. See the attachments these are actual costs no write offs.
20210220_103138.jpg
20210220_103137.jpg
let me know if they are clear
 

lisa g

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This is the one done in Florida
 

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Nikki J

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interesting. Thanks. I am surprised the discount is so minimal for both
 
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