First Visit at ALS Clinic Tomorrow

[lgelb]

Yes, it's based on authorization forms they've received, so I wouldn't expect it would be exhaustive -- it could be considered a starting point.

 

[Nikki J]

it does not show mgh though and it should. I even put in mgh’s zip ( which is different than mine) and still get the same distant centers. I know mgh patients got radicava in their infusion center because at the beginning there was talk of the difficulty scheduling people when it was first available.

 

[lgelb]

Tell MGH to sign up and get listed! I guarantee the mfr is not spending a lot of time gathering the data...and they are quoted as saying they're relying on self-registration.

I looked at other national databases, but didn't find any better to recommend over this one (they all appear to be using old location technology, maybe part of the problem). Best advice would be to Google "infusion center" and your city name.

 

[ChesterB]

Happy to hear clinic went well!

i didn’t know the oral edaravone trial was coming to the US. if it becomes an option it will be a lot easier for people.
i gather you are trying for home infusion if part d is being discussed for radicava? Infusion center isn’t an option?

Nothing close by.
ChesterB

 

[KimT]

Your clinic should be able to figure out which Plan Ds will pay for oral. Plan B will not cover oral and all this is new to Plan D providers. My guess is that you will need a very rich Plan D for coverage without a huge deductible.

This is one of the big issues I've had with anyone, including Internet sites and brokers. I've had to call individual plans up and go through each of my meds with them.

 

[Nikki J]

I don’t believe oral edaravone is approved so that won’t be an issue. The trial Chester referenced would be the only way to get it

re plan b coverage of oral meds that were previously intravenous that does happen. I have a friend right now getting oral chemo under plan B because the drug was originally only iv. Thank goodness as it is more expensive by far than radicava even

 

[Nikki J]

Link to oral trial Safety Study of Oral Edaravone Administered in Subjects With ALS - Full Text View - ClinicalTrials.gov