The naked truth about losing health care coverage

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.


12 responses to “The naked truth about losing health care coverage

  1. Glad the outcome was positive! It’s good to know who has your back. I’m sorely disappointed, regarding MGH. I would have thought more help would have been offered to help you. Not the response I would have expected. Glad you’re back on track and hopefully this will not happen to any of us.

  2. I’m so glad you were reinstated. It is almost miraculous that you were! It restored my faith in mankind just a bit. 🙂

    Can you, or have you already, set up automatic premium payments?

    • It is a wonder–reinstatement. I have one more month of cobra, which I shall pay early and then when I get a new policy, I am going to set up auto payment.

      xo Linnea

  3. I guess faced with the alternative I guess I would do everything you did BUT this kind of BS should never even be an issue. Everyone deserves to get the best medical available and never have to worry about getting sick and wondering how to pay for it without going broke. We good on you for not giving up. Blessings Roy

    Sorry about my brevity i’m using my iPhone.


    • It really shouldn’t be this hard but it was. However, I am tenacious. I worry greatly about those who are not.

      xo Linnea

  4. great post Linnea – and it was wonderful news when you share that Wageworks and reinstated you. And yet, it has bothered me since we first heard you were denied. Every visit i make to the my Cancer Center here in Athens, GA, i see someone that can’t afford their $30 copay. Or is so sick or confused or uneducated (or just plain terrified) that they don’t understand the treatment they are coming in for. what happens to them when they are late on a payment (assuming they have insurance at all)? Or if they can’t pay their premium? They don’t have the ability, or the determination, or the fight, to do what you just did.
    Im sure you see much the same at your Cancer Center — that could very well be any of us. And it makes me wonder what we (those of us living with cancer) can do to address this. Like you, and so many of us with this disease, i have helped raise money for lung cancer research. But this constant cloud of health insurance coverage that hangs over our heads is of equal importance. Your advice in this post is great – but no one should be required to have Plans A-G just to survive. And, if we are being honest, few people out there would even be able to develop a Plan B – much less a Plan G.
    Currently, i serve on a foundation here in Athens ( ) that was started almost a decade ago by two local oncologists who saw the financial strain of cancer treatment. They created this foundation with the purpose to help alleviate the financial burden of cancer for eligible patients. (help with rent or utility bills or funds for gas). these are patients that are having to make decisions between taking their medication or keeping the heat running. We can also help with insurance premiums – but only a small amount, relatively speaking. Its a wonderful foundation that has given almost $1.5 million in financial assistance to over 2,700 patients since 2009, but we are swimming upstream.
    i post this purely as conversation. i don’t expect you to have the answers. i certainly don’t. But I’m trying to figure how to do more.
    LOVE! LIVE! – kirk

    • Kirk, so great that you are part of a foundation addressing the financial toxicity of cancer. And yes—it breaks my heart that not everyone has access to equal care, whether the barriers are economic or otherwise. And I wish there were more ways to address this disparity.

      xo Linnea

  5. Beautifully written and said. As much as we rely on MGH and think they have our backs because of our personal connection to Dr. Shaw, it is a business and we can become business decisions. Sandy

    Sent from my iPad


    • Yes, at the end of the day, it is a business. Fortunately, for Dr. Shaw, it is a matter of the heart.

      xo Linnea

  6. So glad you have your insurance reinstated! As I followed your story, I began relating it back to myself, what would I do if I fell into your position, as I don’t have nearly( or very few for that matter) of the connections that you have. I don’t think I could come up with a plan B, C or D, as I am sure many people wouldn’t. It is truly a shame that these insurance companies have us by the balls. Would like to become more of an advocate but not sure how to go about becoming more involved(still working full time). Diane

    • It took some creativity but yes, it shouldn’t be so hard. And there are so many ways to be an advocate–you start with yourself.

      xo Linnea

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