Is anyone successfully getting treatment through Medicaid?

[desertangel]

Everything is free with Medicaid in my state, but the problem is you have to get prior authorizations put through by doctors in the network and the doctors in the Medicaid network are not trained to treat ME/CFS. Any prior authorization put through by an ME/CFS specialist out of network (and all of the ME specialists I know of are out of network) will be denied. This is at least according to Medicaid rules. Has anyone tried it and had it go through? I have considered trying to get a part-time job and getting insurance through that job or through the marketplace but I am not confident that even if I had BCBS or another "real" insurance that I would be able to get treatments like IVIG or Valcyte covered. I may just be paying for insurance and still paying for the medications while, in the current situation, I am at least not paying for insurance.

Open enrollment is coming up. Is anyone in the community able to get treatment for ME through Medicaid? If so, what treatment were you able to get?

Thanks everyone. I really appreciate any tips or advice you have.

 

[bspg]

Hi @desertangel. I don't know what state you're in but I'm on Medicaid in CO. The only way I've found to get ME/CFS care in Medicaid is to pay for an ME/CFS specialist out of pocket, then find a Medicaid PCP who is willing to work with my ME/CFS doc to manage my care.

I paid for an ME/CFS doctor through funds raised on GoFundMe. Sadly, that was the easy part! The hard part has been finding a Medicaid PCP who is both taking new patients AND willing to order tests/treatments that my ME/CFS doctor wants. I think I've finally found a PCP who is going to work.

Its a complicated and ridiculous way to get care but it's the only way I've been able to get anything done thus far so I have to do it. I hope that helps.

 

[desertangel]

@bspg This would work for everything except for expensive things like IVIG right? Like for pills I can see getting a GP to prescribe valcyte (with some hassle) but IVIG would have to be administered by a professional.

Is this accurate? I wonder if it’s worth it to switch insurances for that reason...

 

[desertangel]

The only thing is I don’t want to switch insurances and have this same problem. Then I’d be paying for insurance and still not have treatment.

 

[bspg]

I haven't tried getting anything like IVIG or rituximab covered so I really don't know if Medicaid would cover them. They are supposed to cover any medically-necessary treatments for FDA approved uses but it might be a struggle to get them to cover for other uses (MECFS, MCAS, etc).

As for pills, tests, etc. as long as it's ordered by doctor who's enrolled in your Medicaid program, they should cover it.

 

[Learner1]

The advantage to seeing a really good ME/CFS doctor is that they likely can find diagnoses with ICD10 codes that qualify you for medically necessary treatments like IVIG.

I still have ME/CFS, but my ME/CFS doctor also found common variable immune deficiency which is known to require lifelong IVIG treatment. He also found a weird but very real presentation of EBV, along with HHV6 and CMV, for which Valcyte is an appropriate treatment.

Then, I came home for treatment, as he's in a different state and deal with my local doctor. I get IVIG from a nationwide home infusion service, where a nurse comes to my house to do it. I believe they work with Medicare and Medicaid.