Insurance cover for Belatacept anti rejection infusion therapy. How do I get insurance for this drug therapy? My Medicare ends in 3 months?

[Kidneygirl]

Has anyone else had experience in getting Belatacept covered (or not covered) under their ACA insurance provider or other insurance provider? If so, how did you go about it? What was the process? How easy was it to get them to decide to cover it or not?

I am going on three years after a successful kidney transplant. I am in my twenties so I will no longer be able to get my insurance through Medicare. Medicare insurance ends 3 years after transplant. I need to get a new health insurance policy.

Right now I am looking at getting a policy on the Connecticut ACA (Obamacare) heath insurance exchange. I am not working. The problem I am having is that the ACA web page indicates that the policies offered will not cover Belatacept (my very successful anti rejection infusion drug). This drug is not generic and can easily cost between $25 - $30 thousand dollars a year. Medicare covers this very expensive therapy, but seemingly a lot of other insurance policies do not.

I have been told that once I get insurance I may be able to get cover for Belatacept if I "go to war" and appeal the insurance company's decision under their medical coverage instead of their drug coverage plan.

I am in a bit of a chicken or the egg scenario here. I don't know which insurance cover to buy as I don't know which insurance provider may or may not ultimately agree to cover this drug or not until after I buy the insurance. I can only get their decision after I buy the insurance and go through the appeal process. This is why I am looking for other people's experience with this problem.

I don''t want to change my anti rejection therapy as Belatacept has been working so very well for me.

[WYOAnne NKF Ambassador]

Ask your transplant center's social worker for help. You are probably not the only person that has had this same problem.

[Kidneygirl in reply to WYOAnne]

Thank you for this information and it is good advice. I am pursuing that avenue at this time.

[Kidneygirl in reply to WYOAnne]

Thank you for writing. I approached the post transplant financial coordinator. I will also contact the social worker as per your suggestion. Thanks!

[NewStart2020Boom]

My son needed an antiviral that cost 1200.00 a month. Our insurance would not pay for it. Our hospital/ pharmacy had us apply to a foundation that helps with that sort of thing. They approved us for one year of free medication. It was based on his income. As he had hardly worked the last year prior to transplant because of his illness. Talk to the pharmacy , the company was Genentec Access to Care Foundation. Maybe they can help you. 😊

[Kidneygirl in reply to NewStart2020Boom]

Thank you for your reply. I am pursuing this avenue of action with the drug company that makes Belatacept. It is not at all clear if I can get help from them. Thank you very much for your suggestion. I will see if this foundation can offer any help too.