August 20, 2020 at 10:58 am #24602Lupa FParticipant
There are now 2 treatments available for adults and we know the exorbitant prices for both of them. Much of that price is profit for the companies that distribute the treatments. The cost is maybe justified for children where you can change their lives and they never have the muscle loss that adults have. But is the cost really worth it for adults?
Not that this would happen, but would adults with SMA have a better quality of life if just given the money that would otherwise pay for the treatment? The lower priced of the two is $330,000 a year. That could pay for a lot of quality of life upgrades: whatever equipment you want could be bought; equipment repairs would be quicker as insurance would no longer gate-keep payments before services; assistants could be paid a much better wage and attract higher quality carers; homes could be modified or even bought that are much more suitable; vehicles could be purchased so we wouldn’t have to use unreliable government or hospital transportation; and any other advantages of such money could bring.
I’m sort of torn. I was very close to not being able to live independently just as I started Spinraza and it has let me stay where I am and keep living alone. But the main reason that was so important was that I couldn’t afford the home modifications, equipment or assistant that I felt I was going to need in the upcoming years. If I had the means to pay for all that stuff, maybe my life would have ended up better than simply holding it in place with the treatment.
What would you choose?
August 20, 2020 at 12:00 pm #24608LosmiParticipant
wow this is interesting… but in your case since Spinraza enabled you to keep living independently I think the answer is clear, Spinraza over money.
At least this how I see the world, I don’t think happiness, pleasures, comfort etc. are the most important things in life; I think we are here to learn, work, give love (if we succeed in understanding what love is)… so in order to remain in the best possible position to do that I think it is extremely important for a person to live independently. It is very important just because you are pressured to learn more about how everyday life actually works, but also because you learn so much about yourself when parents or someone else like that is not around.
As for the people who are not in situation like you I think money or drugs would be a serious dilemma.
BTW, if I understood correctly $330,000 is only a starting point of Evrysdi cost, final price is going to be higher than that:)
August 20, 2020 at 12:28 pm #24609DeAnn RKeymaster
Interesting question Lupa. I’ve certainly struggled with justifying being on such a ridiculously priced medication. I think the progressive nature of the disease is why I would choose treatment. My health was on a downward spiral before starting Spinraza. Honestly I don’t know if I’d be here today without it. You make some great points though between quality of life and affordability. Right now I’m battling finding a caregiver with the low wage I can offer. I struggle with the fact I’m on this expensive treatment and still need the care/equipment/services as before. Although the profits for these drugs goes to the pharmaceutical companies, they do a lot of outreach work for various communities. My hope is that it brings them closer to finding treatments for other rare diseases as well. Back to your question though, I would rather struggle a little and have an extended life than have every amenity and have my life cut short.
August 24, 2020 at 2:12 pm #24639Robert StumpParticipant
I would choose the money (with a caveat). Like most financial transactions like this one would need to estimate how much money over the remainder of your lifetime is most likely to be spent on one of these new drugs, then a formula would need to be developed to offer the recipient a one-time cash payment in lieu of the treatment.
For me, I don’t think a one-time taxable payment of $330,000 would be enough to have me forgo treatment, but it’s close. If, however, we were closer to $1,000,000, the answer is a clear yes. If I was offered $550,000 it would be difficult but I would probably say yes. Same if I was offered $120,000 per year for the rest of my life. No one knows the future, but without treatment I will be surprised to still be here in 5 years, with the treatment I’m estimating 15-20 years if progression is totally stopped.
We would each need to search our own souls to know the right thing to do, but yes I do wish that this “offer” existed even though it would be difficult to choose.
I suppose some only other questions would be whether the payment will affect my other services, Medicare/Medicaid/SSDI, and whether there would be any stipulations on how the money could be spent (housing upgrades, attendant care, transportation, etc.).
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