Newly diagnosed Multiple Myeloma and AL Amyloidosis - Standard of Care

Posted by mgm4kc @mgm4kc, Jul 11 12:09pm

As my husband's advocate, I am trying to understand several processes (the learning curve is steep!)
How do I find the Standard of Care for this dual diagnosis? We just finished a two week fight with the insurance company over a PET scan. As we move toward treatment, I question whether there will be delays due to denial of authorization from our insurance carrier. I'm told if it's a standard of care procedure, it's covered. Is that accurate? Can I use that to appeal future denials?

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Patty, Volunteer Mentor | @pmm | Jul 11 1:10pm

@mgm4kc
Ugh I’m so sorry. Generally my physician’s office advocates for something she has ordered. Have you spoken to the nurse or doctor about this problem? The hem/onc clinic should be able to help with this.

Colleen Young, Connect Director | @colleenyoung | Jul 18 1:47pm

@mgm4kc, I'm tagging a few other members like @cemeterygal01 @mkempson42 @naiviv @tlcox49, who also have experience with a dual diagnosis of multiple myeloma and amyloidosis.

Have you considered enagaging with an oncology social worker to help you work through some of the entanglements of insurance approvals. New patients/caregivers sometimes are not aware of this role that social work can play. Learn more in this article:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Is your husband in the care of a team at a cancer center?

mgm4kc | @mgm4kc | Jul 18 8:12pm

Thanks Colleen, this is very helpful. We are so new to this new journey, we don't know where to find resources. Just starting to realize how much this will invade our lives and hoping to understand more about the insurance process. We were just switched to a new oncology team and I will ask about the social worker support team.
Appreciate your message.

smiles1951 | @smiles1951 | Jul 19 9:40am

In reply to @mgm4kc "Thanks Colleen, this is very helpful. We are so new to this new journey, we don't..." + (show)

Yes, it will take more of your time but having the "correct attitude is VERY important." From the beginning the doctor told me that my world had not come to an end. I realized yes, I had Multiple Myeloma Stage 1 but "it didn't have me." Ask Mayo team for literature, DVDs, and speak with knowledgeable Care Team members. These things are time well spent. I am replying, and I hope this helps. Now to resume projects that are very important to me. All.

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