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What to do when health insurance denies CAR T treatment

Posted by cjj2 @cjj2, Dec 11 11:47am

My husband’s chemo for multiple myeloma is no longer working. The oncologist’s request for CAR T was denied by health insurance. The oncologist’s appeal was also denied. The oncologist is a top researcher in multiple myeloma. Stem cell replacement was another option, but has much more downtime and associated side effects which my husband feels is unacceptable since he is still working full-time. Any suggestions for us?

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merrle | @merrle | 1 day ago

While my answer is not very informed, those individuals I am aware of who skipped over the whole stem cell transplant, and went straight CAR T did so via a clinical trial. I’m curious if anybody can confirm this and provide their own story. For what it is worth, I returned to a relatively high demand job (I’m an NP) at 10 weeks after stem cell transplant for MM, I worked fully remote for a while under FMLA, taking on workload as I was able. This would not have worked without a boss and company that were very supportive. Cognition and fatigue were and continue to be my greatest challenges, along with the fact that I continue to have what feels like never ending medical appointments. No doubt ongoing chemotherapy contributes to cognition and fatigue so would be so great if you are spouse did not have to deal with that. I do have the benefit of a wonderful palliative care team who has helped me with these issues. I am hopeful that your spouse is able to access the treatment you want and also hopeful that if he is not, there are pathways to his maintaining work in a way your family needs. Take care

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cjj2 | @cjj2 | 1 day ago
In reply to @merrle "While my answer is not very informed, those individuals I am aware of who skipped over..." + (show)
@merrle

While my answer is not very informed, those individuals I am aware of who skipped over the whole stem cell transplant, and went straight CAR T did so via a clinical trial. I’m curious if anybody can confirm this and provide their own story. For what it is worth, I returned to a relatively high demand job (I’m an NP) at 10 weeks after stem cell transplant for MM, I worked fully remote for a while under FMLA, taking on workload as I was able. This would not have worked without a boss and company that were very supportive. Cognition and fatigue were and continue to be my greatest challenges, along with the fact that I continue to have what feels like never ending medical appointments. No doubt ongoing chemotherapy contributes to cognition and fatigue so would be so great if you are spouse did not have to deal with that. I do have the benefit of a wonderful palliative care team who has helped me with these issues. I am hopeful that your spouse is able to access the treatment you want and also hopeful that if he is not, there are pathways to his maintaining work in a way your family needs. Take care

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Hi, Merrie!
Thank you very much for your thoughtful response. My husband read it, also. His greatest concerns with the stem cell transplant is about dealing with the cognitive changes & the time away from work. He’s convinced that the best route for him is CAR T.
We have his next oncologist appointment in January, so we will learn more at that time.
Thank you again for your message. I wish you all the best!

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merrle | @merrle | 20 hours ago

Please keep us posted on what develops for both of you if you are able. Best wishes.

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