Has anyone done self-pay for Kisunla?

gailtothev

Hello, we just prepaid for the first 4 treatments of Kisunla because it was denied by insurance bc my DH is "too young" (less than 60 years old). We were told it would be about $30K a year, but the estimate we got from the provider was $30K for the first 4 treatments. Anyway, has anyone else decided to self-pay and what were your costs/how did you get costs reduced, if you did.

I'm reaching out to other infusion centers/doctors to compare prices and attempting to buy through my pharm insurance (express scripts) because their posted prices are less than what we paid through our provider.

Any thoughts or advice would be appreciated!

harshedbuzz

Have you reached out to the Lily Cares Foundation to ask about patient assistance?

MaryMN

It never hurts to file an appeal with your insurance company. Unfortunately, many companies have a system set up to deny claims first and hope you don't question it.

gailtothev

Thanks! Yes, I've appealed it and they straight up sent a letter basically stating he's under 60 so they don't do it. I also did look into Lily Cares. They requested some documentation that my insurer couldn't provide. I'll get back on that horse, I guess. It was frustrating to go around in circles from my insurance to the pharm insurance, each pointing fingers at the other for who was responsible for the "drug formulary."

SDianeL

they deny because the drug did not include PWD under age 60. Here’s a interesting article: https://beingpatient.com/kisunla-insurance-dan-jaworski-clinical-trial/

dayn2nite2

I will add my thoughts, and if my perspective doesn't work for you, feel free to disregard. I am a VERY practical person. I just cannot see, having been through this entire disease with someone to its inevitable end, spending $30,000 for 4 treatments as self-pay. To me, the person with symptoms is already compromised, and you are trying to keep a compromised person "going" at a compromised level.

I would much rather take money (and not even $30K) and have an experience my LO and I enjoy, whether that is going somewhere for a "last hurrah" before travel gets too difficult, or paying to bring people to you for a reunion.

My thoughts do not go with the "battle mentality" that seems to be out there now. This is a terminal disease, no matter how long it lasts. After some years dealing with the progression, you do get to a point where you want your LO not to suffer anymore, even if it means life ends earlier. Some may think I have a quitter mentality, but I believe making happy experiences for the LO and myself is a far better way to deal with this disease. One fact remains - nobody has ever been cured by Kisunla.

trottingalong

https://alzconnected.org/discussion/comment/268232#Comment_268232

You are not alone in this opinion. In the beginning we all hope there is a magic cure, or a way to slow the progression. In early onset the progression appears to be quicker and there’s no proof going through medical procedures currently available makes much difference. My husband and I decided to enjoy life while we could and not be bogged down by medical appointments. There are zero regrets. I’d put that 30 grand towards my bucket list. But that’s just me.

Quilting brings calm

These are my thoughts, and you can read them or not as you wish:

The reality is that most people cannot afford to pay $30,000 for 4 treatments. Let alone 3 times that for a year’s worth, or 5 times that for 18 months. Even without the cost, there’s the facts that a) It merely allows things down for a while, doesn’t cure or reverse anything and b) The possible side affects include brain bleeds. Brain bleeds / the last thing someone with cognitive issues needs.

Have you looked at your finances? Is there enough money to a) pay for a several year stay at memory care and b). Allow you to live a dignified life for the rest of your life after he passes? Because these things need to be considered since these treatments will not change the outcome- and may actually cause his suffering to be prolonged. The ethical question is similar to someone with terminal brain cancer deciding if they want to live 6 months with debilitating treatment or 3 months of relatively more stable health before the end.

gailtothev

Thank you all! I appreciate all of your viewpoints! Thanks for taking the time to share them!