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.
life and breath: outliving lung cancer 
My Fellow Soldier, Reading your ordeal about clinical trials and insurance this week… I want to scream, cry, strangle a few people, and have yelled FUCK out loud to no one in complete frustration and solidarity for your troubles. Oh friend, any chance you have the strength to appeal a third time; since they cashed your check (implying they were accepting payment for coverage)? I get it if you don’t. And mad that the cancer center couldn’t provide better resources for you. SO FRUSTRATING.
I’m taking a deep breath, too. And sending all my Pachamama energy to you to help you with this situation. So glad Terri is getting us together and Lilly is paying for it: sounds like you could use the break and the lift. I think we all can. Rooting for you, and keep giving them hell and sharing about it. You are changing opinions and feelings about this, Linnea. All the baby steps count, Treasured Soul.
UNIVERSE: Linnea needs health coverage. ASAP. Thank you!
Hang in there, and feeling miraculously fortunate to see you soon, – Celia
On Fri, Jul 13, 2018 at 1:16 PM life and breath: outliving lung cancer wrote:
> linnea11 posted: “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 ” >
Sigh. I’m so, so sorry. For what little they are worth my agnostic little prayers will be for you tonight.