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Hi Mara,

I, too, have TOS and I live in MN. I thought I was the only one to spend hours upon hours between providers and insurance. In MN, there is a Legislative Advisory board for Rare Diseases.

Here is the MN statute regarding rare diseases.

https://www.revisor.mn.gov/statutes/cite/62Q.451#:~:text=(a)%20No%20health%20plan%20company,restrictions%20through%20any%20prior%20authorization%2C

Just Google MN Rare Disease Statute 62.Q.451, it should come up.

This law was to prevent health plans denying people/children with rare diseases treatment, even if it of state or out of network.

This advisory board has only existed for 1 year.

I called my TOS specialist and asked if TOS is a rare disease and he said yes.

Oh and I record every conversation on the speaker feature and record on another device. 🙄 it has saved me big time with being able to tell them I have a recording contradicting what they are telling me now and what I was told on then I give date and time.

I wish for your a restful night and take deep breathes and hopefully soon, you will get some answers.

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Thank you this is super helpful!

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Omg! This is infuriating. However, I felt the 13 minutes I used to read this were well spent. Hoping you get the resolution you want soon!!!

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