Making 2021 RADicava
For us, hope exists in 60mg of fluid administered intravenously each day. We know this medicine, Radicava, will not cure ALS, nor will it regenerate what's already lost. We're also aware that prior studies have shown mixed results -- different people at various stages of illness react differently. But there's nothing else out there right now, and we have to believe that this drug, combined with a couple others, may result in delayed progression of ALS in Patti's body.
Approved by the FDA in 2017, Radicava is a relatively new treatment. Our family attended online webinars, spoke to doctors and experts, read numerous ALS patient blogs, and scoured the depths of the internet to learn more about the effects of this drug. Personally, I have never read as many scholarly articles from medical journals as I have over the past few months. There was no doubt that we wanted to go for it; Patti said that she was ready to do whatever it takes.
However, the price tag for a day of treatment is roughly $1,000. For one cycle (14 days), it would cost $14,000. That's approximately $168,000 per year. We were feeling the stress; there was no way I was going to tell my mom she couldn't get this treatment because it was too expensive. After about a month of back and forth with her doctors, Radicava reps, and Blue Cross Blue Shield insurance, Patti found out that the treatment would be covered. We were overjoyed. (I may have cried a little.)
Here are her happy texts -- you can see why we were psyched to celebrate NYE!
And here's a lengthier message from Patti after she found out:
I just wanted to let you know that the insurance approved my infusions of the next drug to add to my fight to slow down my ALS!!! I will begin getting my infusion on Thursday, January 7th. Fourteen days on and then ten days off in a cycle; then it reverses to ten days on and fourteen days off.
I will have training for the first three visits from an infusion nurse provided by the pharmaceutical company that produces Radicava, and then I will be able to do it on my own! This is all in the comfort and safety of my home. It'll take 60-90 minutes for the infusion to be completed. The plan is to start me with a midline for the first cycle and then possibly go to a port or pic for future infusions. Making sure that I am not allergic or experience side effects, it is easier to keep a line in without having to go to the hospital for the procedure for port/pic.
I am so very relieved and extremely grateful that all went through for this added drug in the new year! If I didn't have my family and friends to support me, this wouldn't have happened!!
Also, I am on the list to go through approval process to begin the platform trial drugs, probably starting in February and March. I already had on pre-screening interview, but I need to be accepted into the trial by the team of doctors that run it. My doctor is one of the leading team members, so I know I have her for support.
I am so very grateful for you all and hope to continue to share good news throughout my ALS journey in 2021! Love to you all and your families! Happy New Year!!! Stay safe, wear a mask, wash those hands, and enjoy life with your loved ones!
So, on January 7th, Patti had her first infusion. So far, she hasn't experienced side effects. Nicole, Patti and Al's wonderful neighbor and a nurse, has come over to assist (masked up, of course!)