I almost forgot my most important update! Insurance called me to schedule my 2nd delivery of Kalydeco! Since I am taking it off-label, which means that the FDA has not approved it for either of my particular CF mutations, there is the worry that they might stop covering it. At $28,000 per month cash price-this would be a big problem.
This is a main reason for the lung function and sweat chloride tests before I started the Kalydeco, and one month after I start the Kalydeco......hoping that it will improve my numbers and we can use that to fight the insurance company-if we have to.
I am using it on-label, but Vertex is still concerned that the insurance could stop covering it. I think they are just worried because it's so pricey!!! Also, what pharmacy do you get it through? I get it through CF Services and they've decided not to charge anything beyond the wholesale price. So a month's supply is $24,500. It probably wouldn't change things with your insurance, but thought I'd toss that idea out there anyway!
ReplyDeleteI get mine through the Accredo Pharmacy-which is the specialty pharmacy for my insurance company. So far it seems to be working fine so I am not going to mess with it!
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