I’m finally approved… the first new treatment in 22 years for ALS

So as you may or may not know, there is no cure out there for anyone with ALS.

Bummer I agree wholeheartedly of course. But progress is being made everyday. I’m more than confident a cure is just years away. I’m certainly gonna do my bit to be here when that happens or help those long after me to have a chance. I’ve spent hours upon hours doing research on everything and anything out there worth trying. There are great strides being made. I’m most interested in what Stem Cell discoveries will bring. I’m fighting for the right to try a specific Stem Cell treatment developed in Israel and I’m fascinated with that. This treatment just last month received approval to move into a Phase 3 study here in the US. That’s really awesome: It means they’re one step (a really big one at that) closer to approval from the FDA.

Now I should tell you that the FDA has approved only one single drug for ALS patients, and that was 22 years ago (since then, nada.) That drug, it’s said, could possibly add a few more months for patients but no one I’ve ever met is excited about it. So that was the state of FDA approving anything significant until this past May 5th, 2017. Then, out of nowhere, medical professionals in the US were  informed that some new amazing drug trialed in Japan, called Radicava extended life expectancy in ALS patients by 33.3% (that’s by a third, for those playing at home).

Wow, I said… sign me up. I’ll start now, let’s do this. I’ve got graduations and weddings and future grandkids to attend to.

Well it wasn’t that easy. Since this news was out of nowhere the US medical community and especially the always-a-pleasure-to-deal-with insurance industry were stumped as to how to get this into the hands of patients that need it and were willing to take it. Wouldn’t everyone with ALS be willing,  you ask? Well maybe not, as this treatment is administered via ongoing intravenous infusions. 

Here’s the process: Patients start with daily infusions for two weeks and then have two weeks’ rest.  Then another 10 days of infusions, and another two weeks’ rest. This process repeats itself… for the rest of your life. 

The next hurdle: who will pay and how to pay for this treatment? The cost of each Radicava infusion is $1,000 and treatment costs $146,000 annually. So…. Insurers are scrambling, trying to figure out how avoid covering. it. Patients that are Medicare and Medicaid are the lucky ones so far. Those people. (including myself) are now getting this approved and paid for. This is the big piece that is holding up the process to get it to folks that need it.

So…. after many many calls and pleas for approval, I was finally notified that I was approved last week. This is more than five months after the first patient started treatment in the US. There are now about 1000 patients nationwide getting the infusions at infusion centers across the country. I feel lucky to finally get approved, even with that frustrating delay. There are many more patients awaiting approval still!

And so… tomorrow, Monday January 22, 2018 I will be at Stamford Hospital at the infusion center and something that may help to keep me around 33.3% longer will be flowing through my veins.

I’ll keep ya posted 😎

With the goods!     01.22.2018

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