My doctor thinks I may be able to get a lawyer involved but I don’t know what that entails or what kind of lawyer I would reach out to.
The treatment is very expensive (intravenous immunoglobulin therapy). It is off-label. My insurance is calling it “experimental.” Since my neurodegenerative disease is so rare, there is no go-to treatment. This is all I have; there is nothing “on-label.”
Is there anything that I can do? I have been fighting them since April of this year and received denial after denial. Meanwhile my disease is getting much worse. Eventually it will affect my organs and become more than just a pain disorder.
I have done the entire appeals process, I even got a second opinion to support us. I have a patient advocate. I got a case manager with Blue Cross. I looked into clinical trials. My husband and I pressured his HR representative to talk to Blue Cross. I even went to the Mayo Clinic – my doctor thought they would put me in a clinical trial but they did not. Ive gone to the ER for the nerve pain, still didn’t get the treatment. I’ve seen about 8 neurologists at this point in pursuit of one who could figure out how to get it covered – while all of them wanted to help and agreed that I needed it, I have exhausted everything that they suggested.
I have talked to people on the internet with my condition and most of them aren’t able to receive this treatment because insurance doesn’t like to pay for it. I’m in my 20s, I’m not giving up yet.
Location – Phoenix
Income – $18/hourly
submitted by /u/p4pp13z
[link] [comments]My doctor thinks I may be able to get a lawyer involved but I don’t know what that entails or what kind of lawyer I would reach out to. The treatment is very expensive (intravenous immunoglobulin therapy). It is off-label. My insurance is calling it “experimental.” Since my neurodegenerative disease is so rare, there is no go-to treatment. This is all I have; there is nothing “on-label.” Is there anything that I can do? I have been fighting them since April of this year and received denial after denial. Meanwhile my disease is getting much worse. Eventually it will affect my organs and become more than just a pain disorder. I have done the entire appeals process, I even got a second opinion to support us. I have a patient advocate. I got a case manager with Blue Cross. I looked into clinical trials. My husband and I pressured his HR representative to talk to Blue Cross. I even went to the Mayo Clinic – my doctor thought they would put me in a clinical trial but they did not. Ive gone to the ER for the nerve pain, still didn’t get the treatment. I’ve seen about 8 neurologists at this point in pursuit of one who could figure out how to get it covered – while all of them wanted to help and agreed that I needed it, I have exhausted everything that they suggested. I have talked to people on the internet with my condition and most of them aren’t able to receive this treatment because insurance doesn’t like to pay for it. I’m in my 20s, I’m not giving up yet. Location – Phoenix Income – $18/hourly submitted by /u/p4pp13z [link] [comments]Read Morer/HealthInsurance