Network Gap Exception (out of state) for Rare Disorder
We have a Marketplace plan in Virginia, in an area with a limited health network. I was diagnosed last year with a rare neurodegenerative condition (a movement disorder like Parkinson’s) and I’m working through genetic testing to identify the type. I established care with the attending movement disorders neurologist at the local in-network university hospital last year, but his knowledge of this rare condition is limited. He’s fine to track disease progression, but isn’t familiar with treatment, etc. Even the genetic counselor affiliated with the university hospital knew far less than I did about testing for this condition, and my knowledge is based only on reading online materials and watching presentations by experts via a patient advocacy group. To top it off, when I had an appointment with the neurologist early this year, even though I confirmed with the in-network hospital’s billing department in advance that he’s in-network and Aetna lists the whole Neurology Department as in-network, I received an EOB from Aetna that denied coverage for the visit because he’s OON.
Longterm, patients seeking actual diagnosis and care for this condition end up going at one of four or five specialist centers at major research hospitals across the country. I was accepted as a patient at Johns Hopkins and paid for my first visits out-of-pocket, largely because I had faced an absolute nightmare dealing with Anthem over the last two years—on top of having frightening symptoms and no diagnosis. When Aetna entered our exchange market (which had previously been a near-monopoly with the highest premiums in the country), we took a calculated risk that they had to be better than Anthem. So far, that has been the case.
I ultimately asked Johns Hopkins if they could work with Aetna on a single case agreement due to a network gap exception. Aetna appeared amenable. The paperwork was supposedly all done, and I had my first appointment. However, I’m not certain that this all worked. The hospital is billing me for the full amount, stating that Aetna won’t pay. I don’t appear to have an EOB for the visit.
Long term, I’m trying to understand what my rights are in terms of getting network exceptions for rare disorders. Yes, in theory, I can get basic care from another movement disorders neurologist, but this is a complex and little-understood condition that can be completely disabling. It’s also multi-system, and I’m now having cardiac and gastrointestinal issues on top of very significant neuropthalmological symptoms. Hopkins can treat me for all of that. I want a doctor who can do more than just test me a few times a year and do brain MRIs to show the degeneration. What would you suggest I do?
submitted by /u/Nejness
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