What to do when health insurance denies CAR T treatment

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

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!

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

Thanks very much.

@cjj2, any changes in getting access to CAR-T therapy?

I wonder if you might also enlist the help of your husband's cancer care team, including an oncology social worker. As you can read in this blog post, oncology social workers can be liaison to treatment access:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

How are you and your husband doing?

I am sorry to read about your insurance company denial. That is such a sad situation in the United States. I would try and find a clinical trial. My husband had CAR T treatment on November 5. Besides the absolutely superior care he had as a clinical trial patient, he tolerated the treatment really well. After the first month, he was feeling so much better, looking so much better, and doing things that he hadn’t been able to do for months prior. Now, nearly, seven weeks later, he is well back to his normal self, a feeling he hadn’t had in over a year. While my husband had three days of chemo leading up to CAR T he has not experienced any cognitive changes whatsoever. In fact with the CAR T treatment that he received at Princess Margaret Hospital in Toronto, he had no ill side effects whatsoever. Nothing. Except extreme tiredness on occasion during the first month. Our experience with a clinical trial was exceptional. We would highly recommend this route. Car T is the future of treatment and I would do everything in my power to try this method first.
Nancy Simpson

Thanks for your very encouraging message. My husband’s doctor is one of the top researchers in the world for multiple myeloma. The doctor’s second appeal to insurance for the CAR T treatment was also denied.
At this time, it seems that a clinical trial may be the only way to go for CAR T. We have an appointment with my husband’s doctor in a couple of weeks, so we’ll see what options we have. My husband’s chemo isn’t working anymore, and he has multiple adverse side effects on Revlimid.

Hi, Colleen,
Thanks for your message.
To answer your question, I’m hoping you can read my response to NT Simpson.
In general, my husband and I are doing okay. We’ve had some serious discussions about the future, which I assume everyone with cancer does at some point. I will suggest the idea of seeking help from an oncology social worker.
Thanks for your help.

I have no idea why an insurance company wouldn’t cover this treatment for your husband. Please look into Princess Margaret Hospital in Toronto. They run multiple clinical trials. They are a world class research center. Our doctor at the mayo clinic told us to go to Princess Margaret for treatment.

Thanks for your message. The first insurance denial letter said CAR T wasn’t approved because it was considered an experimental treatment. The 2nd denial letter said CAR T wasn’t medically necessary. At this time, we are going to the M. D. Anderson Cancer Center in Houston, TX for my husband’s treatment. The Princess Margaret Cancer Center in Toronto is something we can ask my husband’s oncologist about. That may be a do-able option- at least it gives us some hope. Thanks, again.