I am not sure how one quantifies the value of a life. Apparently, some people know the secret equation, but I wasn't lucky enough to be one of them. Although, I do not know exactly what my life's value is I do know according to my insurance company my life is not worth $259,000/year. In other words, my insurance is not covering the new drug Orkambi for any of their Cystic Fibrosis sufferers.
I was actually really surprised, naïve as it was, because my insurance gladly covers the $300,000/year Kalydeco for patients with the correct mutation. I thought that if they would pay a higher dollar amount for one groups of CFers they would pay for a less expensive version for another. We all know life isn't fair and insurance companies rarely make sense so I guess thinking my insurance would cover this medication was faulty logic.
The really horrendous part of it is I am not sure I will be eligible for the Vertex patient assistance program for people who have insurance refusing to cover the cost of the drug. This could mean that unless I magically become extraordinary wealthy, an extra $20,000 a month wealthy, I may never have access to this medication.
The only aspect of this whole situation that is giving me hope is that CF doctors in my state are coming together to fight for their patients so that we can all access this medication. The CF community is full of doctors who genuinely care for their patients and for that we are lucky. The only other fiber of hope I have is that potentially my insurance company is negotiating price and may eventually strike a deal with Vertex. The part that is the most frustrating is that I am being left in the dark. The morning after I found out my insurance is refusing to cover Orkambi through another cyster I called my insurance company, my clinic (the CF nurse is on vacation), my pharmacy and vertex. I got zero response and no answers. Now that it is the weekend I have to wait until Monday to hope that someone will answer their phone to provide me with some answers on where we go from here.
Cystic fibrosis patients wake up every morning from the moment they are born until they die ready to fight. It is the only way to ensure we wake up every single day. I am ready to fight my insurance in any way possible, my life is on the line!
Ugh! That's horrible! I hope you get some help from Vertex. Do the Affordable Care Act plans cover Orkambi?
ReplyDeleteThank you, I hope Vertex helps, too :) If not The Affordable Care Act is my backup plan. Winter is usually really rough for me so I would love to get access before the new Affordable Care Act sign up, but if that is the only way to access the meds I will!
DeleteWhat type of insurance do you have?
ReplyDeleteI have GHPP. CCS is another insurance in CA that is similar, but for children, that will not currently cover Orkambi. They are insurance providers from the state, but you do have to pay for them. Because they are state insurance providers is the reason I think Vertex is unable to assist. However, I am not sure they have any federal funding so they may not fall under the same category as Medicare which means Vertex may be able to assist. As you can see I am definitely not an expert on this and I hope to get some answers on Monday.
DeleteThat is awful!!! Though I do know that of all the insurers Medicaid has posed the most problems with Kalydeco. And that is also probably why Vertex won't give it to you free - they don't want to "subsidized state-funded programs." If you don't get more answers this week though, I am on an ACA program right now and have been really really liking it. I've actually been able to swing it so that the exorbitant cost of Kalydeco works out well for me with this plan. If you think you might end up going that route, let me know and I'll give you my tips. ;) You can do this, cyster!!! Insurance is the devil, I swear...
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