My blood pressure and sleep cycle took a serious hit last night, and it wasn’t my cancer acting up.
I was online researching the details of my 2018 health plan. I had already made my selection during Open Enrollment–only one plan met my needs. I was digging deeper into my 2018 coverage for more major changes–like my copay for medical visits jumping from $15 to 10%. I had to search for a link, that wasn’t at all obvious; finally I found “Annual Enrollment has Closed. View your future coverage” and clicked.
Much to my surprise, Boeing’s benefits website said I had chosen a new 2018 health plan. A quick review of terms showed it didn’t cover my Colorado clinical trial!
My heart rate shot up. My throat got tight. My breathing accelerated. That trial has kept me alive for five years and counting, and provided my expensive targeted therapy drug for FREE. Another clinical trial is my best hope for staying alive when this cancer drug fails me (as it is likely to do); both ROS1 trials and ROS1 expert oncologists are virtually non-existent in my home state of Washington. My Colorado oncologist is among the handful of world experts in my type of cancer and has access to all the ROS1 clinical trials. If I didn’t have access to out-of-state experts at academic cancer centers, my hopes of long-term survival were greatly diminished. It would be bigly expensive to pay for out-of-state medical care personally–about $10K for each clinic visit that included a scan.
Hubby wasn’t home and not available by phone, so I texted a couple of fellow patient advocates and snuggled kitties to calm myself until I could think things through.
Could it be a glitch in Boeing’s benefits website? I had a message on file from Boeing saying I would have the same health plan unless I directed them to change my plan. Yet when I clicked on that link ‘view your future coverage” link I was in a different health plan that only had access to selected clinics near Seattle, not the Blue Cross Blue Shield (BCBSIL) national network I’d been in for years.
Did I click on the wrong button during open enrollment? My brain doesn’t remember things as well as it did BC (before cancer), but I was pretty sure I hadn’t seen a screen that said anything like “confirm your change in healthcare plan.”
Might Boeing take pity on a metastatic cancer patient with chemobrain and allow me to change my plan, if indeed I’d chosen the wrong plan? A fellow metastatic lung cancer patient said her plan allowed her to make a change after open enrollment closed when she realized she’d missed the deadline. I certainly hoped Boeing would be equally understanding if I’d made a mistake.
Alas, I couldn’t take any action last night, as Boeing Benefits was closed for the day. My only option was to call first thing in the morning.
I had a bad night.
Fortunately, this morning Boeing Benefits confirmed they had misleading info on their website. I still have my excellent BCBSIL coverage for 2018. I can continue in my clinical trial and have most of my medical expenses covered.
Whew!
However, I suspect this is not the last such panic I will experience. I suspect we chronically and seriously ill patients in the USA will be facing more insurance-related shocks over the next several years.
Last year, several friends who are self-employed cancer patient/advocates on Affordable Care Act plans discovered their longtime oncologists at academic cancer centers were no longer covered by any plan on the ACA. This year, another cancer patient discovered their health plan’s 2018 formulary dropped their expensive, life-saving targeted therapy cancer drug (which costs upwards of $10,000 per month in the US). Uncertainty in the insurance market and proposed changes in subsidies and and the tax code threaten to drive up insurance costs even faster. As insurers leave the market, some patients can no longer find plans in their geographic area that cover their needs.
And, when I turn 65 in a few years and become eligible for Medicare, Boeing will no longer provide health coverage for me (that’s another long story). I’ll have to change to a far more expensive and less comprehensive Medicare plan–assuming Medicare is still around.
“Who knew healthcare was so complicated?” Ask any patient with serious health conditions.
As more patients lose healthcare coverage options, the healthcare system may have to add a new code: Death from health insurance changes.
Gray Connections 
I’m so glad the initial scare has been rectified! As you say, though, more scares are likely to come. And some patients’ insurance coverage amounts to a nightmare day and night. Your advocacy work is so important, Janet. The last line of your post says it all.
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This whole health insurance challenge is enough to give us all gray hair — if we didn’t already have it! My husband has diabetes, and we live in fear that health insurance providers will suddenly consider it a preventable disease or decide that insulin isn’t covered their “formulary.” There’s already the donut-hole coverage gap for medications, which adds up to thousands of dollars every year. I’m glad your story had a happy ending. Fingers crossed that your coverage continues.
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Hey there! I don’t think I have ever written a comment here-but have been following your story and lurking here for several years. I don’t even remember how I came to find you either initially. I think I was doing research when my very best friend was diagnosed with stage 4 lung cancer in January of 2015. I have no idea what type he suffered from, as he lost his battle very quickly and was just gone in 5 weeks. I miss him dearly every single day. The main reason I am reaching out to you today is I actually work for Anthem, INC.
I have had my own issues with insurance coverage and I WORK THERE!!!
I would like to offer some insight-insider trading-so to speak for anyone who has questions on their coverage or their plans. Providers try to screw us over as patients every single day. They get patients to sign papers so that you are responsible for the charges if Medicare or some other plan does not pay. Most people are unaware of what they are signing. You don’t have to sign this agreement in order to receive care. The doctor is trying to make ends meet on the backs of the patients they are supposedly serving. What I find in my own case is this, a lot of big healthcare organizations and/or doctor’s groups and a ton of hospitals-they all are contracted with Medicare and healthcare insurance companies like Anthem , United Healthcare, Humana, Aetna, Cigna(these are the top 5 players in the industry in the USA). They get together behind closed doors and people who are patients have no idea what the deal is. I am a claims processor-so I don’t get to peek inside either-it’s like this secret closed meeting or organization and if you are NOT a member you can’t see the “privileged” information. It is all about the money and that is not going to be easily solved in this country. I honestly see no way that Congress will ever agree, or reach a viable solution to the healthcare industry and its problem in America. It is BIG business and I am just a grunt in a huge corporation and they would rather keep me in the dark and feed me manure, and hope I just keep quiet and go along with the BS, because I need my job and I will be scared to speak up. Well, I am not a mushroom!
This is a huge game and it is for profit taking, not quality affordable healthcare for anyone. The people who can afford to pay(those of us who have benefits and health insurance with our employment) are paying for all of those who can not. I now process claims for Texas Medicaid. Medicaid is a payer of last resort-in laymen terms-when a member has Medicare coverage for instance, they are responsible for 20% of what the Medicare allowance pays for their claims. If the Medicare recipient has no supplemental plan or insurance to help pick up some of that cost, then the out of pocket expense is 20% of what your claim pays-not 20% of what the doctor or hospital billed Medicare. If there is a supplemental plan to help defray that bill for the 20%, then that other insurance pays what it pays. Whatever is leftover goes to Medicaid to pay the remaining balance. The patient pays 0-ZERO!
I am a USA taxpayer-so I am paying that person’s bill with my tax dollars every year, every paycheck that I get-some of that Medicare employment tax that we all pay into-they take it as soon as the check is cut-on everyone! Senior citizens who are on Medicare-they are paying for it too in a way. Your social security check has a deduction for Medicare-they take it before you see the check and some seniors I have spoken to are paying it and don’t even understand what it is for.
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Thanks for sharing your views of the health insurance industry. It is indeed complex.
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