So the Xalkori has been amazing and I’m so grateful I’m one of the ~70% of people with my mutation who are responsive. I should be able to continue progression-free until the tumors adapt. It takes an average of 18 months for tumors to resume their progression although I’ve read blogs from folks who’ve continued to be responsive for 4+ years. Yay for that! However, Xalkori doesn’t cross the blood-brain barrier so it doesn’t act on my brain tumors. I’d need to rely on radiation and my complementary approach to keep those in check. Nevertheless, I believe I could live a normal life on Xalkori for over a year at least.
Unfortunately, there’s a small issue with the price. Technically we could afford a few years but I’m not excited about the potential of leaving Brad high and dry. Instead, I’ve been working on brainstorming some other options. Note that the prices below are for Xalkori prescription only. I also need regular MRI and PET scans to monitor tumor growth.
- Currently: Hong Kong Private Insurance
I have great private insurance that’s covered 80% of the $10k US price tag. Alas, cancer is expensive and I’ll max out that benefit in about 3 months. That leaves about 7 months to pay out of pocket until I start a new policy year in September 2019. Prescription only cost: ~$82k US/ year. I keep working in Hong Kong with it’s pretty high cost of living. - Best Hope: Hong Kong Public Health Care
I’m waiting on a referral letter from my private hospital to the public hospital. Public healthcare is free in Hong Kong but I don’t know if Xalkori is covered as the standard of care. We’ll find out in a couple of months but I’m not getting my hopes up. Prescription only cost: Free? I keep working in Hong Kong with it’s pretty high cost of living. - US Blue Cross/ Blue Shield PPO COBRA/ ACA Exchange HMO
I’ve kept my US Blue Cross/ Blue Shield PPO Insurance under COBRA – $1200/ month for me and Brad. Under that insurance, our Xalkori co-pay will cost about $5k/ month. A review of the ACA exchange for Texas shows comparable costs for an HMO. Premium+Prescription only cost: ~$72k US/ year. We move back to the states – may be tricky finding a job in my condition; lower cost of living. - US Medicare
Being Stage IV, I should qualify for disability and medicare in the US. According to my research, Xalkori will cost about $5k/ month out-of-pocket under Medicare. Prescription only cost: ~$60k US/ year. We move back to the states and I collect disability.
Because of these prices tags, I’ve been investigating clinical trials where medication is presumably covered. I’ve been in touch with the Dana Farber Cancer Institute in Boston about their trials of a drug called lorlatinib, an alternative targeted therapy for people with my mutation. Unlike Xalkori, lorlatinib crosses the blood-brain barrier to act on brain tumors.
I’ve been reading up on lorlatinib so far – the one thing that makes me nervous is that in a recent Phase 2 study only 36% of the 47 participants with my ROS1+ mutation were responsive… compared to Xalkori which I know I’m responsive to for now. But it works on brain tumors…
We’ll see. I need to have progression of my brain tumors but no progression of my other tumors to be eligible so we’ll see if that happens.
I want to add that I don’t resent Pfizer for the price of Xalkori. I can’t imagine the costs of the research and approvals that went into developing this miracle medicine. Of course they need to recoup those costs. It just breaks my heart to imagine someone less fortunate than I am in this position if I’m struggling to justify the cost of each extra month of life. We really need a better system.
Update: We figured this out and have a plan!!
