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Beth Swanson

@write4chocolate.bsky.social

660 followers 200 following 140 posts

#Freelance #Writer and #PT covering health, chronic illness, and parenting. #Exvangelical lite. 🩷 the ⛰️mountains, 🌸 summer, ☀️sun, 🌏 travel and Ivie 🐶. #hEDS. 🦓 Healthcare is a human right. 📧 [email protected]

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Beth Swanson @write4chocolate.bsky.social · Dec 7

So many people sharing stories about denials from their health insurance company this week. Here’s ours.

www.huffpost.com/entry/brain-...

#healthcare #healthinsuranace #cigna #UHC #CEO #POTS #hEDS #CCI
#BCBS #Chronicillness

My Daughter Desperately Needs Brain Surgery. Our Insurance Company's Response Has Been Shocking.

"The insurance company has an army of people who are very concerned about paperwork and precise wording ... My kindness and patience has shifted to fury."

www.huffpost.com

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Beth Swanson @write4chocolate.bsky.social · Mar 23

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!

ProPublica @propublica.org · Mar 22

Internal documents and former company executives reveal how Cigna doctors reject patients’ claims without opening their files.

“We literally click and submit,” one former company doctor said.

(Published March 2023 with @capitolforum.bsky.social)

How Cigna Saves Millions by Having Its Doctors Reject Claims Without Reading Them

Internal documents and former company executives reveal how Cigna doctors reject patients’ claims without opening their files. “We literally click and submit,” one former company doctor said.

propub.li

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

Beth Swanson @write4chocolate.bsky.social · Mar 17

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!)

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.”

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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.

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Beth Swanson @write4chocolate.bsky.social · Mar 17

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

Beth Swanson @write4chocolate.bsky.social · Dec 7

My Daughter Desperately Needs Brain Surgery. Our Insurance Company's Response Has Been Shocking.

"The insurance company has an army of people who are very concerned about paperwork and precise wording ... My kindness and patience has shifted to fury."

www.huffpost.com

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Beth Swanson @write4chocolate.bsky.social · Mar 10

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. 🩷

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Beth Swanson @write4chocolate.bsky.social · Mar 10

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.)

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Beth Swanson @write4chocolate.bsky.social · Mar 10

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.

Beth Swanson @write4chocolate.bsky.social · Mar 10

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.

Beth Swanson @write4chocolate.bsky.social · Mar 10

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.

Beth Swanson @write4chocolate.bsky.social · Mar 10

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.

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Beth Swanson @write4chocolate.bsky.social · Mar 10

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.

Beth Swanson @write4chocolate.bsky.social · Mar 10

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. 🩷

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.

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Beth Swanson @write4chocolate.bsky.social · Dec 21

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

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Beth Swanson @write4chocolate.bsky.social · Dec 14

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.

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Beth Swanson @write4chocolate.bsky.social · Dec 14

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.)

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Beth Swanson @write4chocolate.bsky.social · Dec 14

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.

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Beth Swanson @write4chocolate.bsky.social · Dec 14

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?

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