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You don't have insurance, right?


Strolling in the garten (garden) behind our Vienna apartment

How many times have I heard that when speaking with various people from Stanford and UCSF? Too many. I would then launch into, "Actually we do have insurance but your facility doesn't accept our insurance, so we'll be paying cash"


For many years we have used a medi-share program called Liberty HealthShare which has been great. The idea is everyone pays a low monthly premium into the collective "pot." Should you need medical care, then once you've met your deductible, Liberty will cover a percentage of our medical costs, up to a $500K or 1M (depending on the plan). This type of insurance with way less red tape really suits us. You can choose care anywhere you like (literally at any facility, in any country), the company easily gives pre-approval for the big events like PET CTs, and you are totally autonomous in terms of the type of care you choose----they don't distinguish between a visit to an energy healer or an internist.


The way it's supposed to work is a medical facility sends a bill to Liberty HealthShare. Liberty then either passes it back to us if we haven't met our deductible, or pays the reasonable and customary amount if they have. However, in real time we've found that California hospitals and providers do not look at a medi-share plan as insurance and are not willing to bill Liberty directly. Here's the tricky part for Shane and I. We are paying every cost out of pocket and waiting for Liberty's reimbursement which they have up to 180 days (six months) to provide. That's a long time to wait when neither of us are working.


Being cash pay means I've had some amusing conversations with hospitals of late. I'll mention two...


Number One: A nurse from our Stanford oncology team called to have a financial chat with me.


N: "You do understand that if you choose to start immunotherapy next week [4 doses of Ipi + Nivo over 12 weeks] that it will be $120,000 up front."


A: "Yep, I understand."


Number Two: A financial counselor from El Camino Mountain View called me to discuss Shane's port placement, in fact I couldn't schedule the appointment until we'd spoken.


N: "The total will be paid in full before the procedure and it comes to $22,870, but with a 75% cash pay discount you'll be paying $5,686."


A: "Yep, got it."


75% discount? $120K for four treatments? Those two conversations shone a light on how off-kilter our healthcare system is. We the consumers rarely, if ever, stop and think about the real costs of the care we receive. Instead, we show up to the doctor's office, flash our insurance card, dole out our co-pay, and until the EOB from the insurance company arrives weeks later, we have no idea of the true cost of our care.


My dad let us know about ACA (Obamacare redux)---danke, Dad! Thanks to the generosity of the federal government (who have oodles of money to throw around---wink, wink), for the rest of this year certain insurance plans are bringing on new members, pre-existing conditions notwithstanding. We jumped on knowing that Shane's medical bills will go on for quite a while and having two insurance plans will provide better coverage than one. My father-in-law spent hours making this happen for us (phone calls, forms and more phone calls)--thanks, Dad! When we're back in the States (they don't provide overseas coverage) and once we've met the deducible that plan will kick in. Bummer is we have to meet the hefty deductible in January once again, but we're still grateful to have this extra layer of coverage!


We are so grateful to be here in Vienna receiving care with Dr. Kleef and his wonderful team of nurses. The treatment that the Kleef clinic offers is customized, it's pricey and it's not available in the US, but we're here because Shane's cancer is so advanced and progressing so quickly that we felt the offerings in the US weren't sufficient. We believe that being here is his very best chance to survive. He seems to be responding really well thus far, and we are cautiously optimistic about his prognosis!


In the meantime, your donations have been invaluable, truly manna from heaven. We've treated them as sacred and every penny has gone towards the cost of Shane's treatment (medical care at the clinic, prescriptions, tests), which is nearing the six-figure mark now. Our challenge is that we pay the clinic every week, out of pocket and the reimbursement from the insurance company won't come for up to six months. FYI, one generous family member has covered all of our travel costs and housing while we're abroad for which we are unbelievably grateful.


Your faith and prayers have also been so precious. We feel them and we know they make a difference too! Can we ask you to keep those up?


We love you!