I understand. My original diagnosis was wild type and my insurance denied Amvuttra. Now that we have genetic results indicating it is hATTR my doctor is resubmitting for authorization. If you have wt they should still put you on one of the medications to slow progression of the disease. I’m fortunate to have an amyloidosis center at the hospital near me which helps get to doctors who specialize in this rare disease. I’m now seeing a neurologist who knows about the disease. For nearly two years they simply diagnosed me with neuropathy for unknown cause. Good luck on your treatment journey!

We are at the mercy of pharmaceutical and insurance companies.

Thanks Greg. It appears I need a doctor to say I have cardiomyopathy to get Amvutra. I want it for the polyneuropathy but it is only FDA approved for those with hATTRpn. I have wtATTRpn which does not frequently occur and therefore Amvutra is not FDA approved for wild type ATTR with polyneuropathy. Crazy. My feet are numb.

Carol
I would suggest a second opinion from a cardiologist who specializes in amyloidosis. You have to be your own advocate. I had poly neuropathy about 2 to 3 years before my cardiologist diagnosed me with ATTR CM. He immediately put me on Vyndamax. After genetic testing confirmed hATTR he’s now working on prior authorization for Amvuttra. You should research amyloidosis doctors near you. Good luck and don’t give up!