I'll believe it when I'm actually getting the treatment for real, but there was progress at the end of last week.

Part of the hiccup is that the treatment was developed by the research arm of a non-profit hospital system rather than a big pharmaceutical company with deep pockets. The drug is expensive but provided by the hospital. Of course the hospital's pockets are not exactly shallow, and they have some flexibility in what they can charge for room rates, but it got more complicated.

When I saw the hospital's public charge list, the rates for room and board varied from cheapest for Medicare patients, to medium for my insurance provider, to exorbitant for some lesser insurance companies. After I offered to self-pay for the room and board at a median rate, my insurance company clarified they wouldn't be paying for _any_ of the other testing or fees associated with the trial at all because it was experimental/investigational, although they have good results from this treatment with other types of cancer. That put it out of reach, temporarily...

BTW, a 3-week in-patient stay does seem to be the norm (or least not uncommon) for this type of therapy -- lymphodepletion followed by a stem cell transplant.

It would normally have gone from just a staring contest between the hospital and the insurance company to a "peer-to-peer" phone call between the treating oncologist (study lead) and the insurance company's medical director, but that was denied because coverage was "contractually excluded" by my policy.

So we started the standard, painful, multi-level appeal/grievance process before a Nurse Navigator / Advocate at the insurance company finally stepped in and arranged a peer-to-peer call to discuss "medical necessity" which cleared it up and got me the approval, since I've pretty much exhausted the Standard of Care treatments.

I'm fortunate that my huge employer has a cancer concierge program associated with their insurance; I think that carried some weight.

It's ironic that a social worker suggested last year that I retire early (age 60/61), claim disability and get on Medicare early. Aside from the facts that I'm not really too disabled to work (yet) and I (kind of) enjoy my job, I had heard enough bad things about Medicare that I've been reluctant to go that route.

The trial's research nurse told me none of the other patients on this study had been denied coverage by their insurance company, but that's only 4 people so far -- and most of them are on Medicare. I'll be patient #5 for the therapy overall, and patient #2 in the pancreatic cancer cohort.

My (private, employer-based insurance company's) nurse navigator told me Medicare doesn't generally seek pre-authorization for treatment; rather, it's sort of an honor system in which the government implicitly trusts providers up front but holds them accountable if the treatment is obviously frivolous, unnecessary, inappropriate, or whatever.

I understand the public distaste for programs that "socialize the risk but privatize the profits." Of course nobody wants to see money wasted, but research isn't free. Even the non-profit research centers have to pay big dollars for their top-notch PhD/MD researchers. That money doesn't grow on trees, but the government has made some funding available for cutting-edge research through the "Cancer Moonshot" program.

Anyway, it seems most of the bad things I've heard about Medicare are usually tied to the private "Medicare Advantage" plans.

I'll hold my comments about how messed up the system is (and how stressful it is to deal with) for now, and just thank God, my nurse navigator, and my oncologist for making this happen. I've volunteered since the day of my diagnosis 2.5 years ago to be a guinea pig for research. This is the first success getting into a clinical trial out of 6 I've applied for, and it's been 6 months in the making for this one. I sure hope it works!!!

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