Well, it's been an interesting/exhausting/emotional/anxiety-ridden month since I posted last. But I can tell you today, I finally have some relief.
To be in the research study I mentioned in my last post, May 23, my insurance, Humana, needed to cover all bloodwork, CT scans, bone marrow biopsies, and one drug: Rituxin immunotherapy infusions. In this randomized study you may or may not get the Rituxin infusions; you find out when you begin. So all approval needs to happen prior to beginning the study. Everyone in the study receives Imbruvica pills as well. The major benefit of this pill is that the data behind it has incredible results of putting CLL into remission, it's safe to take for many years, and it has none of the ill-side effects of chemotherapy. However, Imbruvica can cost up to $13,000 per monthly supply before insurance. In this study, you receive it 🆓 for 5 years.
We had plans to begin June 6, but 4 days before that, we found out my insurance was denying to cover Rituxin, should I need it. They also stated I didn't need the Imbruvica either.
Yeah... #thankshumana
My doctors at MD Anderson worked on a formal appeal. So every day I was waiting for the call saying, "Book your flight. The study is ready to go." So you can imagine all the anxiety my husband and I were dealing with. It was all very emotionally and mentally exhausting.
Last week I found out that the appeal came back and they denied yet again the Rituxin, but they have now approved the Imbruvica, should I get it outside of the trial.
So many questions. So much confusion.
✈️Back to Houston.
My husband and I met with the team at MD Anderson Tuesday, June 20. Dr Burger told me when an insurance company is refusing for things with a trial, it can be difficult to fight.
He said if he were me he would take Imbruvica solo, outside of the trial by prescription. Problem➡️we priced it with insurance and it would be $3,000 per month. But MD Anderson told me they can work with specialty pharmacies that will be able to get the price down. I was extremely confused about how that can work, but they assured us it will.
I then got a call from a speciality pharmacy (June 21) stating I qualify for a co-pay program through the manufacturer of the drug. The qualifications are: 1.) you have a commercial insurance policy (meaning not Medicare, Medicaid, etc.) AND; 2.) your insurance company has approved that you need the drug. So in the appeal, it was approved. Great news! This pharmacy applied for me to be in the co-pay program, and I was approved. This provides the drug to me at an extremely discounted rate and the medication will be delivered tomorrow, June 22.
WE ARE BEYOND THANKFUL! After a month of extreme unknowns, emotions, worry, anger, sadness - we are thrilled to finally feel some JOY‼️
My goals (and hopes!!) for now are: 1.) to tolerate this medication well; 2.) that it will work to shrink my lymph nodes and; 3.) put CLL back into remission.
I am to see my MD Anderson team 1 month after treatment begins for a follow up.
⭐️Always save the best for last, right? The best news we received is that Dr Burger said so far in this study they are not seeing that the addition of Rituxin to the Imbruvica treatment plan is providing any additional efficacy in bringing/keeping CLL in remission. So taking Imbruvica alone can achieve the same results.
No more appeals. No weekly flights to Houston. No bone marrow biopsy (again - hallelujah!). No CT scans again. Yet projected SAME results.
I look forward to reporting back with [hopefully] nothing but progress and steps toward remission.
Thank you all for the prayer, love, and support.
#endcancer
