Round 8 started Monday and so far nothing too exciting to report. With Radicava, no change is the goal because this drug is supposed to slow the progression. No news is good news. I realized recently that we haven’t really discussed why I’m taking this medication, it’s importance in the fight against in ALS, and what it looks like for Kenneth and myself. So in effort to educate, lets discuss this adventure we’ve affectionately dubbed “Radicava Ridiculousness“.
According to Radicava.com:
- How will I know if Radicava® is working?
- Because Radicava® does not cure or reverse ALS, you may think that it is not working or you may feel it is not making a difference. It may help to remember that in clinical trials, Radicava® was shown to slow decline in the loss of physical function in people with ALS. It is important to continue to receive Radicava® as prescribed and talk to your HCP about any concerns you may have.
- Radicava® (edaravone) is the first FDA-approved treatment option for amyotrophic lateral sclerosis (ALS) in more than 20 years. In clinical trials, Radicava® was shown to slow decline in the loss of physical function as measured by the ALS Functional Rating Scale–Revised (ALSFRS-R).
- I started Radicava on 10/4/17 and my ALSFRS-R Score was 34
- Today my score is 33
Please take a sec and go through the blog I posted on 10.2.17 titled Mind = Blown. This post covers the importance of Radicava’s emergence into the world of ALS and the data behind how it got here. It’s approval in May 2017 was huge!
Now let’s talk about what this looks like for Kenneth and myself.
Keep in mind, this is billing just since January 1, 2018 when my coverage reset. Currently we are paying the COBRA cost to continue my insurance coverage. As you can see above, coming out of pocket for the cost of this medication just isn’t realistic. I was covered by JA through the end of February, and after LOTS of research, phone calls, meetings, and vodka the decision was made to stay on COBRA for as long as they’ll have me because $670 per month = $2010 quarterly and that beats the heck out of the $131k insurance has paid out this quarter.
Please know that there are other medical events included in that $131k number – I’ve had my teeth cleaned, back cracked, got a Bi-Pap machine, attended ALS Clinic at Texas Neurology, had a mole removed, and have 4 months of other medication refills – it obviously takes a village. Thankfully there are programs available to help ALS families pay the astronomical cost of coverage.
- Searchlight Support – https://www.radicava.com/patient/support/searchlight-support/
- Searchlight Support™ provides education and assistance for people who receive Radicava® (edaravone) and those who care for them. Our care coordinators are ready to help.
- HealthWell Foundation – https://www.healthwellfoundation.org/
- The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses.
Disclaimer: I’m not claiming to have any idea what I’m talking about, and if any research you conduct returns a different answer, then you are correct and I am wrong. This is the info I have found and appreciate any and all insight from other ALS families.