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Home My StoryMedical Updates Lorlatinib Update: Lots of Activity, No Real Progress

Lorlatinib Update: Lots of Activity, No Real Progress

by Maggie Jones

A quick update on where I am on securing lorlatinib. I have a couple of parallel streams going but neither seems particularly promising. Just a reminder that I don’t qualify for the Boston trial since I’ve had progression of my body tumors.

In the US

Insurance denied coverage of the lorlatinib prescription from the Mayo. We’re appealing and should have an answer in the next week. I think this is my best shot. If it is approved, I’ll probably need a quick trip to cheapest US location to pick it up. I’ve actually been wanting to see Saipan…

In Hong Kong

My oncologist blew my mind on Monday telling me that he’d gotten me into a Compassionate Use program with Pfizer that would provide the drug for free (just doctor and prescribing fee which should be just a few hundred US out of pocket). I was so thrilled! Then I heard via some contacts at Pfizer that this expanded access program had ended and some quick googling on my part showed it was ended just last month.

I went ahead and signed the application papers yesterday and left a message asking what’s up and if we can arrange for a backup treatment, just in case. Either my HK oncologist pulled some strings in which case I take back everything I’ve ever said about him OR he doesn’t know what’s going on. I haven’t heard back yet. If he is actually amazing and got me in, it will take 4-7 weeks to get ahold of the meds. If it’s the latter hypothesis, this is his 4th strike and I’m going to find a new oncologist.

My Backup Plan

I’m now working with UCI on qualifying for a clinical trial of repotrectinib which was developed by the same chemist, Jean Cui, who developed crizotinib (Xalkori) and lorlatinib. I actually was introduced to her by the awesome Pfizer couple we met in Thailand over Christmas. The trial is in early stages but looks pretty promising. No need for big brain tumors for this one so I’m still having those zapped later this month. There’s even a branch of this trial in South Korea but those doctors haven’t returned my emails.

In the Meantime

I’m still taking crizotinib but will run out at the end of the month. In Hong Kong I can only get a 2 months supply at a time (about $20,000 US). Insurance covers 80% but I’m starting to bump up against the max annual coverage with many more expensive procedures in my future.

The Mayo can give me a 2 week prescription for which insurance and Pfizer co-pay assistance should cover almost everything but I’ll need to pick it up in the US.

Lots of moving parts here. It’s just the kind of planning project I enjoy!

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