Monthly Archives: July 2018

And as if you haven’t heard enough…

My friend Casey—aka Mighty Casey Quinlan, interviewed me for this week’s Healthcare is Hilarious installment and we discussed my Cobra debacle. One more time. Happy, shiny, glittery ending and all.

Support Casey (a formidable individual and advocate too) and give a listen here.

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.

xo

FAITH IN HUMANITY & COVERAGE RESTORED

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In a word

Yesterday I received a phone call from the appeals manager at WageWorks. They had been inundated with letters/faxes/emails on my behalf. And, she said, it was slowing down my case. Because each time a new communication arrived, it had to be open, read, and filed. I couldn’t help myself and simply burst out laughing. “Yeah, I have a lot of friends.” To my great relief, the manager chuckled as well.

But then I asked her what she meant when she said ‘slowing down my case.’ I had been led to believe that I was now done with WageWorks, and that my second appeal, which I was hard at work on, would be going to UFP Technologies. The manager than explained that it was a two tier process, that my case was not decided by one entity alone. And then she said she would call me as soon as my second appeal had been reviewed.

We were in the weeds here, in a way I hadn’t anticipated. However, for the first time, the banter was friendly. And that made me hopeful.

In the meantime, I had reached out to UFP Technologies simply to confirm the mailing address. The woman I spoke to was also the person who would be making a call on my appeal. She reminded me that I had been late on a payment one other time, back when I’d first gone on Cobra. But she was also incredibly kind and seemingly understanding. She urged me to get the materials for my second appeal in as quickly as possible, so that we could bring this to resolution.

My second appeal was ready to go, barring a letter from Dr. Shaw per my cognitive challenges–she was going to send it to me last evening. I had been working with Gayle Petrick, a case manager from Patient Advocate Foundation, as well as Matthew Cortland, an attorney who believes that healthcare is a human right and who can be found on twitter under the handle MedicaidMatt. Gayle and Matt were (without charge) helping me to prepare my second appeal and Matt was also advising me as to options when and if it was denied.

The folks from LUNGevity and Bonnie Addario were working on my behalf behind the scenes. Chris Draft kept checking in, a representative from the American Lung Association called to see if they could be of assistance, and I was also contacted by the sponsor of the trial, Pfizer. At least one media outlet was interested in doing a story. Countless numbers of you reached out to me both for support and counsel. As I said at one point, I was turning over every stone possible. And if that didn’t work, then I’d just pick those stones up and start throwing them.

Fortunately, that wasn’t necessary. And I have to believe it was because of all of you and your constant stream of messages.

Half an hour after my first phone call from WageWorks (these people don’t call you—that in itself was a wonder), I received a second call. They had spoken to the plan administrator at UFP and my termination had been overturned. Furthermore, if I had any issues in the future, the manager urged me to call her.

I then received email confirmation from the woman at UFP–reinstatement for nonpayment is not something they do but they were making an exception for my, well, exceptional circumstances. And, that if I was to run into any more trouble or difficulty, ‘call or email me so I can help you.’

From here to hell and back. Just like that. Two of the longest, most stressful weeks ever have come to a close. Victorious. A crowd-sourced, group effort with an overwhelmingly positive result. At the end of the day, my coverage has been restored, but so too, I hope, is your faith in humanity. Together we really can overcome.

Thank you.

 

A fresh concern and it’s a whopper

Sent by a straight female friend 🙂

A lot of you are friends with me on Facebook so you’ve already seen the splendid offer I received. However, too good not to share with a broader audience.

And….so very many of you have leapt into action and sent letters/faxes/emails to WageWorks on my behalf. Thank you thank you thank you.

All of your comments and suggestions have been welcome/helpful as well. One recent comment made me realize I might be in a bigger pickle than I thought if my coverage is not reinstated. Open enrollment for Affordable Care Act policies is in December. However, the end of Cobra is a qualifying event, meaning I could enroll at any time. Termination from Cobra for nonpayment is a non qualifying event, which might preclude me from getting any sort of coverage (I do not qualify for medicaid or medicare) until the end of the year. If I am misunderstanding this, please apprise me.

My rapidly developing ulcer just increased in size. As well as my determination that there is only one way this can end—so very much is at stake. So please, keep those appeals coming. I shall be sending a fresh one off later today (thanks for the tutorial in how to send a fax for free from home, Miss Kimberly).

Terminal & Terminated

Terminal and Terminated.

I realized yesterday that I have had continuous health coverage from the moment I was born until just now–fifty eight years of buying into the American Dream of health and happiness. And it’s hard to believe that one missed payment was the undoing of this longterm relationship–me and my coverage. And given the fact that they cashed the check, I think we can call this a late payment instead. *However, it is important to note (for the sake of accuracy) that I missed the grace period by a few days, not the due date. The due date was May 31st for June coverage. The grace period ended on June 30.

Yesterday I was most concerned about the bills I am now going to face for care, procedures and prescriptions that were procured under the assumption that I had coverage.

Today I am more worried about what lies ahead. If I am not able to reinstate coverage and/or scramble to be picked up by a new insurer by August 1st, I will have to cancel my CT scan on the 2nd. Ditto for the appointment with Dr. Shaw on the 7th, when I would have labs and also pick up my three month supply of trial drug.

This can’t happen.

I am going to get to work on figuring out where I will get future coverage from but in the meantime, I believe it is essential to have my Cobra coverage, in which I have already met my deductible, reinstated. And I am going to ask your help in doing so.

If each of you could send a letter to WageWorks in which you ask them to reinstate my coverage, I would be much obliged.

Say what you like in your letter but here are the facts. Although the termination notice is somewhat confusing, I missed my June payment. The way Cobra works is you have the month of coverage as your grace period but if you do not make that payment by the end of the month, your coverage is automatically terminated.

In my case, I thought I had paid. Because of my short term memory challenges, I keep a ledger of my bills as I pay them and I had checked off my Cobra payment for June. I pay my bills electronically and there are lots of steps to go through for WageWorks and I must have failed to push submit at the very end.

I got home from Montreal late on the 3rd of July and on the morning of the 4th, went online to pay my July premium, only to discover that I had missed June and was now locked out. I immediately called WageWorks and overnighted my appeal the next morning. On the following Monday I called to make sure they had received it and even though the P.O. showed my letter had been delivered, WageWorks could not locate it. I then faxed my appeal and called yesterday to ask about the status which is when I was told my appeal had been denied and that I had been terminated.

If you have access to a fax they can be reached at:

8335146416  ATTN COBRA APPEALS DEPT

If not, please mail to:

ATTN COBRA APPEALS DEPT, WageWorks INC PO BOX 2998 Alpharetta GA 30023-2998

Reference me as Evalynn Linnea Olson, ACCT #22234499. Let them know that this is a matter of life and death. That if I am forced to stop therapy my lung cancer will jump on this opportunity. And so should they—an opportunity to do the right thing.

xo

CANCER WITHOUT COVERAGE

Aside from something happening to my children, there is nothing I fear more than losing health coverage. And it just happened. Talk about a nightmare.

WageWorks chose to deny my appeal. And yet that didn’t stop them from cashing my checks for two months of coverage for a total of $1675.64.

Insult to injury, one I did not handle well. I am currently on hold, waiting to apologize to the supervisor at WageWorks who I spoke to. Sigh. Not only does lorlatinib have cognitive side effects, it also causes emotional lability and in stressful situations like this, I am not at my best. I was near tears, asked her how they could sleep at night (after learning my money would take two more weeks to refund) and then when she told me I could file a second appeal I said I didn’t know what I could possibly add that was more compelling than a cancer patient in a clinical trial with known cognitive side effects. And that I was calling a reporter instead.

My son August was in the room and when I got off the phone he told me that I needed to calm down (no shit) and that saying those things wasn’t going to help me get what I wanted/needed: coverage. Aug used to be a hot head but these days he’s the one wearing the maturity hat around here.

Me, I’m just a mess. My landlord told me that it’s going to be a $100 charge for the replacement of my keys to the apartment, my head and my heart are all banged up and now this.

I sent an email to Alice, the head of the cancer center and the person in finance who has been helping me select my next insurance from the MA Health Care Connector–I was planning ahead for when my Cobra ran out at the end of August. I let all three know that my appointments/procedures at MGH in June and July as well as any prescriptions I had already filled would now not be covered and that until I had new coverage, I would need to cancel upcoming appointments. I asked them for any help/ideas they could offer as I deal with this situation. And I also reminded Mara, the head of the cancer center, that this muddle is exactly the sort of thing I was referencing when I said that clinical trial participants need more supportive services. In my own case, on a drug with cognitive side effects, I could use some help making sure I pay my bills on time. Cuz now I’m kinda screwed.

Hitting the fan.

Hard. In the last two weeks I’ve lost my keys, my boyfriend and my health insurance. I’m over the keys, although what a major pain in the ass. The end of my relationship, a little harder. I was having a really good time and just never saw this coming. We’d never quarreled or had a cross word but everything unraveled quite suddenly and in such a way that I felt rather like a bird who had flown into a window. Absolutely stunned. However, once I’d shaken my feathers, it was clear that I was better off flying solo. Today I availed myself of an unscheduled appointment with my social worker/therapist–just to check under the hood. It would seem I’m good to go but I think I’ll take a little breather before I try dating again.

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But the health insurance, oh my. When I first realized I’d missed a payment I overrnighted my appeal. The post office confirmed that my missive had been delivered last Saturday but when I called WageWorks yesterday they had no record of having received it. And they told me that it would take seven to ten business days to decide my appeal and that the clock would not start ticking until they processed it. I faxed another copy of my appeal to them yesterday but realistically, I will not know until the end of the month whether or not my coverage under Cobra has been reinstated.

It sucks, really sucks, although I own this—it was definitely my mistake. My excuse (and yes, I used it) was that the therapy I am on has cognitive side effects. Sad but true. Anyone who knows me well is quite aware of how challenged I am when it comes to memory. I mean, I have a feeling I’m forgetting something but I can’t remember what (haha). The other night I ordered a pizza, gave them my phone number and then immediately asked if they wanted my phone number. Ten second lag there and it was gone.

This is problematic in a number of ways and as I consider my future I wonder if I will have to go back to work and if I do, how will I manage. It’s not that I’m not intelligent or capable of certain things but when your memory is an issue, it really throws a wrench into things. And in my own case, it might be more than a side effect of my current therapy. Dr. Shaw and I have discussed the possibility that some of my cognitive challenges may be a result of the number of therapies I have had, including two different platinum agents in chemotherapy. And there is no way to know yet if the Gadolinium deposition on my brain is symptomatic–just not enough data and in my case, too many confounding details.

So I muddle along. The good news is that I am less apt to dwell. The bad news is that it is both frustrating and frightening at times to not be able to recall things. Simple things like pushing a submit button, when paying for your health insurance online 😦