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On Drugs and Money Part 2: The Solution + Plan

by Maggie Jones
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First off, how ’bout these cell phone stock photos, eh?

Second, Brad and I nailed down the details on our plan for handling Xalkori and related costs moving forward. Read my agonizing in Part 1 here.  Note that I’ve since confirmed that the public health care doesn’t cover Xalkori-  although, to their credit, they will provide financial assistance for the prescription to needy families. We just wouldn’t qualify.

I admit, I’m documenting the plan here as much to keep things straight in my tumor-addled brain as to let you know what we’ll doing the next few years.

  • As long as I’m healthy enough, we’ll stay in Hong Kong and I can keep working at SCMP. 
    • I’ll max out the benefits for SCMP’s excellent private insurance – if I can schedule my check-up MRIs and PET-CT scans at the public hospital, I will be able to stretch 80% prescription coverage to ~8 months next year.  Since I blew my wad on the diagnosis this year, I only get ~5-months of coverage but that’s okay because…
    • We’ll keep our Blue Cross/ Blue Shield COBRA insurance in the states and get Xalkori there after I max out Hong Kong coverage.  Insured prescription in the US is half as much as uninsured in Hong Kong.
    • Annual prescription + premiums costs: ~$51k US/ year. (~$66k US this year) Much more manageable since I’ll be able to keep working my current job. 
    • Additional opportunities for cost savings:
      • If I can use US insurance to fill the Xalkori prescription in Hong Kong, I’ll save 30% ($10kUS/ month uninsured in Hong Kong vs $15kUS/ month uninsured in the US)
      • When I go into complete remission, I get to cut the amount by 50%.
      • Pfizer has an assistance program in the states I’ll be looking into.
  • When my tumors start to progress – including the brain tumors that aren’t treated by Xalkori due to the blood-brain barrier – I join the lorlatinib trial in Boston.
    • If we need to move back to the states and I can’t work remotely at SCMP, I take a junior level programming job I can do remotely.  Note that I need to do some boot camps to brush up my skills/ learn the latest technologies but I’ll have insurance and can presumably work around treatment.
  • If I can’t get into the lorlatinib trial or I don’t respond we’ll reevaluate  based on the cost and coverage of the next round of treatment options: immunotherapy, old fashioned non-targeted chemo (covered by Hong Kong’s public health care), more radiation, etc.

It feels so good having a plan! I know it’s pretty simple when all is said and done but I think the emotion of just trying to figure out how to handle this diagnosis combined with, you know, brain tumors and radiation damage, have made it difficult to define. Just this little outline has been enough to re-invigorate me.  I’m finally coming out of the fog – back at work (albeit from home) and ready to return to regular living.

Just a few things I need to take care of to enact this plan:

  • Arrange to get a diagnosis confirmation and Xalkori prescription in the states.
  • Talk to my US insurance to see if I can fill the prescription remotely.
  • Start taking classes to brush up those programming skills so I’m ready to pull the trigger on Plan B at any time.
  • Form a relationship with the Dana Farber Cancer Institute so I can slip into the lorlatinib trial as soon as I qualify (brain tumors advance to >5mm but other tumors don’t). In Progress.
  • Start figuring out the plan that should go under that third bullet so I don’t have to brain too much when the time comes for Plan C.

I really need a kanban board in here…

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