Beth Swanson
@write4chocolate.bsky.social
#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.
📧 bethswansonwrites@gmail.com
📧 bethswansonwrites@gmail.com
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.
We didn’t need different insurance.
We needed an insurance company that followed laws. And its own plan documents.
March 17, 2025 at 1:09 AM
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.
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.
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.
March 17, 2025 at 1:02 AM
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.
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.
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.
March 17, 2025 at 12:56 AM
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.
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.
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.
March 17, 2025 at 12:52 AM
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.
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!)
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!)
March 17, 2025 at 12:47 AM
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!)
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.”
First, they sent us a list of a few “surgeons.”
March 17, 2025 at 12:41 AM
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.”
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.
March 17, 2025 at 12:38 AM
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.
March 17, 2025 at 12:33 AM
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.
March 17, 2025 at 12:30 AM
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.
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. 🩷
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. 🩷
March 10, 2025 at 3:14 PM
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. 🩷
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.)
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.)
March 10, 2025 at 3:11 PM
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.)
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.
March 10, 2025 at 3:01 PM
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.
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.
March 10, 2025 at 3:00 PM
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.
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.
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.
March 10, 2025 at 2:55 PM
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.
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.
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.
March 10, 2025 at 2:52 PM
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.
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.
Now that we’re home and she’s a bit more independent, I’d love to talk about a few things here.
March 10, 2025 at 2:44 PM
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.
Now that we’re home and she’s a bit more independent, I’d love to talk about a few things here.
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.
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.
December 14, 2024 at 5:50 PM
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.
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.)
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.)
December 14, 2024 at 5:45 PM
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.)
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.
-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.
December 14, 2024 at 5:31 PM
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.
-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?
December 14, 2024 at 5:27 PM
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?