iiinova — where your digital self keeps evolving

Beth Swanson @write4chocolate.bsky.social · 13/06/2026

Meet Jeorgia. She’s just like Natalie - same age, same love of dance, and the same devastating condition. Like Natalie, she desperately needs surgery for CCI. It’s unavailable to her in Canada. We were lucky - Natalie got her surgery. Please help Jeorgia get hers too. gofund.me/0e611d522

gofund.me

Donate to Help Jeorgia get a life saving CCI Neuro-surgery, organized by Francesca Caruso

HELP SAVE JEORGIA’S LIFE - URGENT NEUROSURGERY NEEDED My name i… Francesca Caruso needs your support for Help Jeorgia get a life saving CCI Neuro-surgery

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Beth Swanson @write4chocolate.bsky.social · 23/03/2025

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!

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Beth Swanson @write4chocolate.bsky.social · 17/03/2025

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.

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Beth Swanson @write4chocolate.bsky.social · 17/03/2025

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 · 17/03/2025

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 · 17/03/2025

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.

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Beth Swanson @write4chocolate.bsky.social · 17/03/2025

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 · 17/03/2025

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 · 17/03/2025

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 · 17/03/2025

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 · 17/03/2025

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 · 17/03/2025

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 · 17/03/2025

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

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Beth Swanson @write4chocolate.bsky.social · 10/03/2025

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 · 10/03/2025

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 · 10/03/2025

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.

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Beth Swanson @write4chocolate.bsky.social · 10/03/2025

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.

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Beth Swanson @write4chocolate.bsky.social · 10/03/2025

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.

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Beth Swanson @write4chocolate.bsky.social · 10/03/2025

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 · 10/03/2025

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.

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Beth Swanson @write4chocolate.bsky.social · 10/03/2025

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 · 21/12/2024

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 · 14/12/2024

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 · 14/12/2024

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 · 14/12/2024

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 · 14/12/2024

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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Beth Swanson @write4chocolate.bsky.social · 14/12/2024

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?)

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Beth Swanson @write4chocolate.bsky.social · 14/12/2024

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.

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Beth Swanson @write4chocolate.bsky.social · 14/12/2024

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.

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Beth Swanson @write4chocolate.bsky.social · 14/12/2024

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.)

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Beth Swanson @write4chocolate.bsky.social · 14/12/2024

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.

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Beth Swanson @write4chocolate.bsky.social · 14/12/2024

Time to talk about #BrianaBoston. My perspective is obvs shaped by our fight to get Natalie care. Why can #healhinsurance companies deny and delay care - often causing harm - while corporate America and Congress just shrug? 🤷‍♀️ “Nothing we can do!” #BCBS #Cigna www.huffpost.com/entry/brain-...

huffpost.com

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."

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Beth Swanson @write4chocolate.bsky.social · 13/12/2024

You know what Cigna told me when they (finally) approved her surgery? They “were just trying to protect Natalie.” From what? School? Friends? Being alive? Killing people is always wrong. Even when you do it with paperwork and a smile.

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Beth Swanson @write4chocolate.bsky.social · 13/12/2024

Seems like I wasn’t the only one looking for this kind of info. (And I think 13 hours a week is low, tbh. Same wirh the 24% delay.)

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Beth Swanson @write4chocolate.bsky.social · 12/12/2024

Yup. This was the opposite of our problem as we tried to get Cigna to approve care. We were told the surgeons were approved, but maybe not the hospital? (Me: the one that is already in-network with Cigna??? Them: Yes, but not *her* network.) Good luck!!

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Beth Swanson @write4chocolate.bsky.social · 11/12/2024

Natalie’s surgery is approved!!! We are excited but exhausted. It shouldn’t take a parent who can write and a kid (young woman) who is willing to share her medical history with the world just to access care. And also, HER SURGERY IS APPROVED!! 🩷 Thank you so much for the support!

Two photos of Natalie. On the left, she is about 6 with two braids, a blue ruffle skirt and has a walking boot on her right foot. She is looking up at the camera with a sad face. On the right, she is now 15, with two braids a black tshirt and red and black plaids PJ bottoms. She has a walking boot on her left foot.

Beth (mom) and Natalie (daughter age 5) smile for the camera. Natalie is wearing a blue and pink sparkly dance costume and holding a bouquet of pink flowers.

A family of four stands under a balloon arch made with pink, gold, peach and white balloons. From left to right - Tanner, a 19yo tall young man with brown hair, jeans and an orange sweatshirt. Then Beth - a 50s woman with a brown bob wearing a flowered dress. Then Natalie, an 18yo with long brown hair, wearing a pink prom dress for at home prom. Then Kirk, a man in his 50s. He is bald with a beard, wearing a purple shirt and black pants. All four people are wearing heart shaped sun glasses in different colors.

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Beth Swanson @write4chocolate.bsky.social · 10/12/2024

Tried to find this info for the article about Natalie. Closest I found a was survey that discovered about half of people get worse w/delayed care Also, @ProPublica.bsky.social does excellent reporting about health insurance companies. Recommend a follow and donation if you can swing it.

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Beth Swanson @write4chocolate.bsky.social · 09/12/2024

Hey for no reason at all, just want to point out that “kids” stop being allowed to be on a parent’s plan at 26. (Until the next admin takes their shot at overturning the #ACA / #Obamacare, then who knows b/c concepts of a plan and all.) #healthcare #healthinsurance #UHC #CEO

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Beth Swanson @write4chocolate.bsky.social · 09/12/2024

Guess they haven’t learned yet. insurance is not an indispensable part of health care, executives are certainly not pillars of leadership or whatever the fuck that line was. And glad it doesn’t include anything about *employee* safety. Or care. JFC.

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Beth Swanson @write4chocolate.bsky.social · 09/12/2024

Morning. Commented on your blog about your daughter too. Just want to say we’re out here fighting the good fight with you. I hope we all can force change to the health insurance industry. (Natalie’s story. Not sure if it will make you feel better or worse tho.😢) www.huffpost.com/entry/brain-...

huffpost.com

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."

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Beth Swanson @write4chocolate.bsky.social · 09/12/2024

I’m so sorry. I just wrote a similar piece about my daughter and her surgery, which our insurance company denied as well. It’s so hard. And parenting our amazing chronic illness kids is a different world. I’m sure you would also do anything for your child. I hope you have good support as well.

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Beth Swanson @write4chocolate.bsky.social · 08/12/2024

Ah man, I’m so sorry. In a similar boat with a surgery our daughter needs rn. We had it suggested that often social media noise/publicity is the fastest way to get them to agree to care? I really hope you and your wife are doing ok!

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Beth Swanson @write4chocolate.bsky.social · 08/12/2024

Thank you. I really appreciate it.

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Beth Swanson @write4chocolate.bsky.social · 08/12/2024

Thank you! I know it’s not that important in the grand scheme of things, but when she got tickets we thought it might be the first big/fun thing she’s been able to do since….i can’t remember when. And she was so excited. Just sad for her.

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Beth Swanson @write4chocolate.bsky.social · 08/12/2024

And to the many, many, many people in my inbox or on these platforms on more restrictive plans who are also desperate for care, I’m so, so sorry. American health insurance needs to do better. I sure hope all the CEOs and admins and politicians are listening to all of us.

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