Beth Swanson

This is one of the articles I quoted in the #HuffPost piece about Natalie’s struggle to get #Cigna to cover her surgery. #ProPublica does excellent reporting on the #insurance industry and #healthcare, and can always use your support!

The power imbalance between an insurance company and a patient is immense. Forget the idea of a level playing field. The field is a vertical line.

We didn’t need different insurance.

We needed an insurance company that followed laws. And its own plan documents.

Insurance companies have the resources, loopholes, excuses, algorithms and work force to make receiving care nearly impossible.

Forget out of network, it’s experimental. It’s not standard of care. It’s not the formulary. Try a different med instead. A different doctor. A different surgery.

She was very helpful here. Called all the offices herself to verify the lack of care.)

So, we didn’t have the “wrong” insurance. We had a kid who needed a rare surgery, and an insurance company that didn’t want to cover it. Even when we did everything right. Even when it was dangerous to wait.

When they couldn’t see her, Cigna sent another list. Different surgeons. Including another disconnected number.

It was like neurosurgeon whack-a-mole.

(I do want to say that I got so many comments about our case manager, saying she was a part of the problem. I still don’t believe that.

Cigna wanted us to go see all of them.

The first office number was disconnected. Another had refused to see Natlaie. Another did not do skull base surgery. 🙃

The one thing I did not do over the years was to ask each office for documentation when they refused to see her. (Learn from my mistake!)

When she had her initial consult with the surgeon, they walked us through how a single case agreement worked. Provided all the images and documentation to #Cigna months in advance. And then Cigna just…sat on it.

First, they sent us a list of a few “surgeons.”

We tried to find “comparable local care” for years. Months and years of being refused appointments. We knew there wasn’t a qualified surgeon for Natalie in WA. #Cigna knew there wasn’t a qualified surgeon for Natalie in WA. Her NYC surgeon knew there wasn’t care in WA.

And even if you have insurance with limited out of network benefits, if there is no “comparable local care” - nobody in the network who can do the surgery - then the #insurance company negotiates a single case agreement, allowing a patient access to care.

Then we tried #UWMedicine. Nope. #Swedish, nope. Eventually, we learned what most people with her combination of conditions learns - there are only a few doctors who do this surgery.

First reason: We live in #Seattle, near two world-renowned medical systems. Including #SCH (Seattle Children’s). Natalie’s initial #hEDS diagnosis was here. And that’s when we learned they had no follow up care. None. “Here’s your dx! Good luck!” Believe me, we tried.

Back to discuss this now that Natalie is recovering well from #CCI #surgery.

First topic: What our #insurance should have covered.

Or, answering the “why didn’t you just have better #healthinsurance?”

(Hot tip: Don’t ask a #parent fighting for their kid that question.)

#hEDS #MD

Think I’ll try to go through one topic a day for the next week or so.

Until then, I’m so very happy to say that Natalie is already much better.

The other day she was just leaning against a counter, chatting and texting.

Upright. And ok. 🩷

5) what to say if you are a doc who doesn’t understand EDS.

You are making the job harder for the providers who understand this condition. Those poor MDs have open their visits with “first, this is a real condition. It’s not anxiety,”

(No one asked for this one, but I have some things to say.)

4) what are the signs and symptoms of cranio-cervical instability? How do you get diagnosed and treated. Happy to walk through it, with all the standard precautions - not medical advice, just our experience, etc.

3) How did you get insurance to cover her care.

Yeah….i wrote a viral article. 🙃

There’s very little coverage for the complicated care for EDS. Partly b/c insurance doesn’t reimburse well. Partly b/c it’s still a poorly understood condition.

2) How did you find care for EDS?

Happy to walk people through my experience and Natalie’s (with her consent and knowledge). I’m sorry to say that it’s a long, windy and sometimes bumpy road. Hope I can make things easier for someone else.

Most of the comments fell into a couple of camps.

1) “you should have had better insurance.”

Because blaming the individual for a systemic problem is the American way.

Nope. We actually did everything “right” and then insurance fucked around. More on this in the coming days.

It got a little tricky in the middle, with a post-op infection. She was well taken care of, her picc line is out now and she’s starting PT. We’re so excited to see where her future takes her.

Now that we’re home and she’s a bit more independent, I’d love to talk about a few things here.

Natalie, a slender 19 yo with redish hair stands outside in the sun in pajama bottoms and a black tshirt. She is smiling and there is a tree and mountain behind her.

Natalie, a 19yo with reddish hair sits on a couch with a small dog next to her. Natalie is wearing a hard cervical collar. She has a blanket with hearts over her and a large heart pillow next to her.

Natalie (a 19yo with reddish hair, wearing a hard collar) stands next to her mom Beth (a 50yo With short brown hair and glasses). Beth is holding a small cavapoo and wearing a pink sweater. Natalie is wearing a green tank top and has a picc line.

Some good news!

Natalie had her surgery! She’s home now and doing so well. She’s in her hard collar a couple more months, and has about a year of rehab to go, but omg, she can think again. And eat. And stand up. It’s a whole new world for her already.

Thank you so much for all the support. 🩷

When even the #Hallmark channel is pointing out how damaging the #healthinsurance industry is, maybe it’s time to reconsider the business model.

#UHC #CEO #healthcare
#HappyHowlidays
#FindingMrChristmas

And to the media , health insurance execs and law enforcement:

What the actual fuck???

Years of school shootings, of hate crimes, of domestic violence . So many now dead people report *actual credible threats* and the answer is 🤷‍♀️🙃 🙈.

And THIS is the one you take seriously.

Come the fuck on.

So to #BrianaBoston, if you ever see this: I’m so sorry for everything you are going through.

I’m so sorry that the #healthinsurance industry needed a scapegoat.

And I’m so sorry that even before that, you had to fight for #healthcare.

Only in America, right? (No, but seriously.)

Things that did happen during our wait:

-I asked our case manager to stop calling us with updates (unless it was final approval) b/c the non-updates were devastating.

- I asked my husband to take over the phone calls for a week b/c I didn’t trust myself not to lose my shit on the phone.

And luckily for me, all of our discussions happened before the UHC CEO was shot. B/c while I don’t *think* I would have referenced it…maybe I would? In an attempt to make someone, anyone, understand the comparable level of violence that I felt the insurance company was putting Natalie through?

I don’t even remember everything I said. That’s why my article says that *I think* I told the CEO to go fuck himself.
I don’t remember the exact wording. I do remember asking if they cared if Natalie died? And if they were ready to pay for her life long care. (B/c money talks, right?)

I’ve never been more frustrated than in my dealings with Cigna over the last three months. I felt like they were constantly talking in circles, with just enough plausible deniability to claim they “were working on it!”

And one day on the phone, I finally saw red.

But when a mom like Briana finally hits her breaking point, and *references national news* somehow that’s the actual threat? That’s the harm?

What about the harm from denied care?

Violence isn’t the answer and neither are threats, but nobody really thinks she was a threat.

Watching my child suffer and struggle to eat and drink, worrying that these changes might be permanent b/c of the delay in care has been the worst three months of my life.

For Natalie, who has to live through it, it’s abusive. (And we would call it abuse if her parents refused to let her eat.)

In the months that we fought and begged for approval, Natlaie’s condition continued to worsen. She is now on more meds, is at the infusion center twice a week, and has lost an unsafe amount of weight.

#Cigna also does not cover her anti-nausea meds, but that’s a story for another day.