Tis the Season- Open Enrollment

If you're overwhelmed, you aren't alone.

Happy holidays wonderful readers-

Here’s a little update on our open enrollment process. I hope Santa brings me a steady job with benefits in the new year!

In happier news, I did the math and I’m proud to share Rare Disease Girl has had about 15k users since I began in February. I’m so grateful you’ve found me. Please consider being a subscriber and I’ll land in your inbox like a pleasant little pop of grace and healing amidst a sea of spam. xo

Open enrollment hell

Open enrollment used to take me five minutes. For most of my adult life it was a series of theoretical considerations and a few clicks. My work place provided options from Kaiser to a Health Savings Account to a traditional PPO. As I aged, the considerations became more thoughtful. I wanted agency over the doctors I chose, having had too many duds. I wanted to get pregnant and decide on the hospital and medical group overseeing my obgyn care. So, a PPO was my choice despite the cost.

Then I got a rare disease that requires one of the most expensive drugs on the market. 

My own PPO employer-based healthcare denied it three times, despite it being a life saving medication. Thankfully I had a doctor who valued my life above drug costs. He gave me the treatment, and then helped me advocate for coverage.

For the last year, it was fully covered at 100%.

And then, I lost my job.

A lay-off for me meant serious consequences. My husband is a self-employed musician, so for all our relationship I have provided the health care for our home.

I negotiated for enough severance to cover six months of cobra costing approximately $3000 a month for my family. At the end of December, the six months are up. And we definitely can’t afford to continue at that monthly rate.

Now, underemployed cobbling freelance contract gigs together while I apply for more steady work, I face the open health market… and it’s overwhelming.

To navigate through these murky waters, since July we’ve been working with a kind insurance broker named Coco. We spend an average of two to three hours a pop on weekly conference calls to find us the best care for what we can afford in this uncertain time.

An insurance broker works for their clients but is ultimately paid by the insurance company, so we don’t have to pay them anything. But it’s an involved process with lots of homework and research to find the best options.

On these epically long calls, the agent helps us try different combinations for different plans and crunch numbers and far too much math.

In the end, it’s likely all three of us will end up on completely different Covered California plans to get me the highest care and the rest of the family the most affordable care with quality doctors to balance out that cost.

And it’s still really expensive. Not as much as cobra, but a lot for a family getting by in a moment of unemployment.

As I pray for a job with benefits to arrive sooner rather than later, I see the profound challenge families like ours face. Coming soon to Rare Disease Girl, an interview with our Insurance Broker for tips on how to navigate the system.

Until then, if you’re in this hellish, part-time-job-long process too - I see you. There are moments when I do wonder if we should all move to Sweden in hopes of healthcare as a human right, but then I remember - it’s not easy to get my drug there either.

It’s a mixed blessing having to take an “orphan drug” where the price is astronmical because the drug company has argued there aren’t enough patients to make production worthwhile unless the price is high enough to make substantial money.

On one hand, 95% of rare diseases don’t have a treatment at all. So I’m very fortunate to have a drug I may need for the rest of my life, to keep me alive. 

On the other hand, the system is not easily set up for regular folks with normal health issues, let alone atypical folks like me.

So, we just sign up and hope for the best and cross our fingers there won’t be a delay in care that lands me in a hospital… I chose to be optimistic.

I hope the same for all of you.

And if anyone is hiring and offering healthcare, drop your pal a line!

And if you have any open enrollment strategies- add it to the comments.

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Reader Comment of the Week

“A thrill. I got goosebumps.” Ellen Mark

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If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo

I started writing this when I was on dialysis. It’s intended for folks on a healing journey or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.

Thank you to Roy Lenn and Richard Burwick for your founding level donation.