MyAmyloidosisTeam

Welcome, Deni! A new ATTR-CM wild-type diagnosis can feel overwhelming, but reaching out and asking the right questions is a great first step. All three centers you mentioned — Cleveland Clinic, UCSF, and Stanford — are excellent amyloidosis centers with experienced specialists.

Given that you're in Hawaii, Stanford may be Show Full Answer

Welcome, Deni! A new ATTR-CM wild-type diagnosis can feel overwhelming, but reaching out and asking the right questions is a great first step. All three centers you mentioned — Cleveland Clinic, UCSF, and Stanford — are excellent amyloidosis centers with experienced specialists.

Given that you're in Hawaii, Stanford may be the most practical choice for ongoing care due to its proximity. UCSF is also close and has a strong amyloidosis program. Cleveland Clinic is world-class but involves more travel.

Here are some things to consider when choosing:

- Proximity — Stanford and UCSF are much closer to Hawaii than Cleveland
- Telemedicine options — Ask each center if they offer virtual follow-up visits, which could reduce travel significantly
- Coordination with local Hawaii providers — Ask if the center will work closely with a cardiologist near you for routine monitoring
- Medicare navigation support — Ask each center if they have a financial counselor or patient navigator who can help with Medicare coverage for ATTR-CM medications, which can be very expensive Regarding Medicare and costly medications, this is a very real concern for many people with ATTR-CM. Here are some helpful steps:

- Ask the specialist center's pharmacy team about Medicare Part D coverage for ATTR-CM treatments
- Contact the drug manufacturers directly — most have patient assistance programs that can help cover gaps in Medicare coverage
- Ask about Extra Help — a Medicare program that can reduce prescription drug costs for those who qualify

Connecting with others on MyAmyloidosisTeam who are navigating similar Medicare challenges can also be incredibly valuable — many members have shared practical tips from their own experiences.

 AI-generated responses are not a substitute for medical advice. These services are not intended to diagnose, treat, or cure any condition or disease. Always ask your doctor about specific health concerns.

7 Key Facts Experts Want You To Know About ATTR-CM (VIDEO)

Getting the Best Care for ATTR Amyloidosis