Dr. GI has determined that he wants me to start Entyvio infusions. This medication will treat my perianal Crohn's disease and hopefully prevent any further abscesses. I'm all for it. I never want to have to deal with another abscess ever again. There's just one slight problem - the cost.
Because I am on disability, I get Medicare insurance - yes, Medicare - like for the elderly. Because Entyvio is an infusion and you have to go into a hospital/infusion center to receive the medication through an IV, paying for it falls under Medicare Part B - the hospital part. It doesn't just fall under a regular prescription. If it did, that would be a whole lot better, but it doesn't so here we are.
Medicare Part B will only pay for 80% of the cost, but not until I pay an upfront cost of almost $4,500, and then somewhere around $1,500 per infusion. In the beginning of treatment with Entyvio you get your first infusion, then another infusion 2 weeks later and another 6 weeks later. Then it levels out and you only need infusions about every 8 weeks. After those initial doses you are only getting about 6 doses a year, but getting to that point is quite costly and the deductible I have to pay starts all over again at the beginning of the year.
I was informed by my GI office that I would more than likely qualify for a program that Takeda Pharmaceuticals has that will help me since I am clearly unable to pay for my medication. I submitted all my information and was finally given the determination. I DO NOT qualify for help from Takeda because they feel I qualify for Medicaid. Alright then.
I contacted Medicaid to find out if I do indeed qualify. (I already went through this several times, but maybe....) Sure enough, Medicaid said I DO NOT qualify for Medicaid because I already receive Medicare and that drops the income level you have to be under to $783 a month. I make slightly over that - S L I G H T L Y!
Takeda Pharmaceuticals still begs to differ and now I'm stuck not being able to get the medication and not being able to get any kind of help. I contacted my disability attorney to see if I was missing something with the whole Medicaid/Medicare issue and she informed me that I should absolutely qualify for Medicaid. She said I am entitled to it and should be getting both Medicaid and Medicare and shouldn't be paying anything for any of my medical expenses. That's all part of being disabled. Hmmm.
So I called the Medicaid helpline and was again informed that there is no way that I qualify for both Medicare and Medicaid because I make too much money. This lady even went one step further and spoke to me in such a way that made me feel like shit for even double checking. Lovely.
I called the disability attorney back and let her know. She said that didn't seem right to her and directed me to the Legal Aid Society for more advice because they handle situations like this all the time whereas her office really only handles Social Security specific issues.
I called the Legal Aid Society where I was told to leave a message and if they feel I meet their income guidelines, they will call me back. I seriously only have one question - Am I entitled to Medicaid or not? What. The. Fuck.
I'm still waiting. I'm still trying to get actual answers. I'm still trying to get help and I'm still trying not to lose every last bit of my shit because this is completely ridiculous and shouldn't be this hard. All I want is the medicine I need that will help me not be sick anymore and not have any more abscesses. Why is it so hard? I cannot be the only person in the world on Social Security Disability who is on Medicare and needs to take Entyvio. Geez!