I will not be treated like a child.
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So I mentioned in the UHC thread that I've been trying to get a treatment for my PK deficiency but got pushback from UHC. The next step is to come back to them with genetic sequencing proving I have the condition.
23andMe actually checks for one or two of the more common mutations but didn't flag them on my report, so I must be extra special and have an exceptionally rare mutation. So I had my provider order a specialized sequencing.
Fast forward to today. I get a call from Columbia saying my test results are in, and could I meet with the genetic counselor tomorrow to discuss. Sure, great news, I wasn't expecting this until after the holidays.
But I'm super curious, so I go to the portal. No results. I log in to the gene sequencing company's (Invitae) website, and they say the results are ready and they'll release them AFTER THE CLINICIAN REVIEWS THEM WITH ME.
Sorry, asshats. That's called information blocking and it is illegal under the 2021 21st Century Cures Act.
Think I'm going to take this lying down? Hell no. I reported both companies to the HHS Office of the Inspector General.
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They called me and released the results after they saw my email.
I thanked them and told them I had already reported them.
