I learned a thing or two from my now-you-have-it-now-you-don’t insurance debacle.
First, that individuals with expensive conditions like a cancer that’s turned chronic are sitting ducks. We represent one of the worst case scenarios for the health insurance industry—someone who requires costly long term care, effectually increasing burden to other policy holders as well as reducing company profits.
As keeping us alive is so very expensive, we are inherently vulnerable. No insurance company actually wants us on their policy and, if pre-existing conditions were still a valid reason to deny coverage, people with cancer would be shit out of luck.
Because we are incredibly vulnerable, we have to make absolutely certain we never provide a valid excuse for booting us—like I just did.
Which is why I was so terrified. Given that I’d missed a grace period, I understood all too well that no one was legally compelled to restore my coverage. From a business perspective it made perfect sense to deny my appeal. The fact that the denial was overturned underscored an exceedingly important point: this was not a legal victory–it was moral.
I also learned the importance of having multiple plans of approach. Not just A, B, C, but rather A, B, C, D, E and F.
When I first realized I’d missed a payment I called WageWorks and, after confirming that my coverage had been suspended, overnighted an appeal. It took multiple phone calls, a second faxed appeal and a full week before I learned that my appeal had been denied. Scratch plan A.
Plan B was to send an email to my oncologist as well as the director of the cancer center–as Dr. Shaw is my personal goddess (yes, I do understand that I have to share her) and the cancer center is my home away from home.
I also initiated plan C, posting a clarion call beseeching everyone I know to contact WageWorks on my behalf.
Plan D was reaching out to LUNGevity; an organization I’ve worked closely with.
And then plan E, F and G happened organically as a result of my multiple requests for assistance, as various people reached out to the trial sponsor, LUNGevity hooked me up with Patient Advocacy Foundation and some pals on twitter introduced me to Medicaid Matt.
Well my friends–it really does take a village. And it was you, the villagers, who made this happen. Plan C, as it were.
Astounding. Heartwarming. Empowering.
The big surprise was who offered little help: Massachusetts General Hospital. My oncologist was prepared to provide documentation per my side effects but aside from also offering to have her reach out to the insurer, MGH came back with this response ‘ We don’t have any other solutions at this time, but let us know how things pan out.’
Not a no but also not the ‘don’t worry, we’ll work this out’ that one would hope for from the folks (second family?) ensconced in my home away from home.
Or, if you discard the warm and fuzzy stuff, the institution that I have faithfully patronized for thirteen years and counting–making me one of their best customers. The cancer center where I served on the Patient Family Advisory Council for four years. I’m on the Wall of Hope, in a permanent display in the museum, have been honored at The One Hundred and, along with Dr. John Iafrate, was a calendar girl. And, of course, I’ve been a source of much positive publicity. Just the sort of patient, who, from both a moral and business perspective, you might want to provide support to.
The take away? Don’t give up, don’t ever give up. Have not one plan but many and don’t be afraid to use them all. If I’d stopped at B, I’d be screwed now. And finally, it’s not necessarily who you know, it’s how many you know. Because we/us/you are a force to be reckoned with.
xo
life and breath: outliving lung cancer 