Story of my child being denied healthcare

[angrychair]

Last edited Sat Dec 7, 2024, 03:03 PM - Edit history (1)

When my child was young, almost 5, started having issues with his face on his left side. It would swell up like they had a golf ball in their mouth, fever and mild discomfort. Neither our dentist or doctors at the time had any idea and neither did we.
This went on for several years. We then moved to Washington. Now 12 and getting used to a new place and it happened again. No big deal we thought. Treat the symptoms.This time we got a different response. Doctor said this is more serious than we think and sent us immediately to Seattle Children's Hospital.

The doctors there are nothing short of amazing. They immediately set to figuring out what was wrong with a host of specialists and a battery of tests.
They then admitted them to the hospital to do more tests and a biopsy of his jaw.


We now had an actual diagnosis: a rare disease called CRMO. It's a sort of autoimmune disease. It was eating away at his jawbone on their left side. Any hard contact on that side would have shattered their jaw.
We had the benefit of a doctor that was a world respected expert on the disease. We made a treatment plan. It was a long road and none of it would be fun.

Let me pause here to say that in the big picture of things we were lucky. This disease almost exclusively effects children and mostly in the long bones and spine causing bone lesions and can be incredibly painful. It comes and goes, called flair ups. Some kids can temporarily lose the ability to walk.
His was just in his jaw. Still bad but it could have been worse

We had a plan and that care plan was submitted to insurance and the claim was denied. I was dumbstruck. I was scared. What the hell are we supposed to do now?
Did I mention how amazing Seattle Children's Hospital is? Our doctor saw it was denied and started the process to have it covered by the hospital. The hospital covered 100% of our bills.
That part is great but for their kindness though my child's life would have been very difficult and painful. My health insurance company tried to ruin my child's life. I can never forgive that. Ever.
I am also cognizant of the fact we were lucky and not all families are that lucky.

So do I feel bad for that guy being killed? Hell no. I don't want to harm anybody but I'm not losing any sleep over it either.

[Aussie105]

1. Greed is good!

Seriously, it is! Part of the American success story, to be successfully greedy.

But a question - which past government administration thought it should privatise health care, and went and did it, not expecting profiteering?

Most other civilised countries have serious health care, one that looks after people irrespective of cost and ability to pay.
Funded by the taxpayer.

We have a two tier system in Australia.

1. The public system.
Life threatening medical situations are dealt with effectively, costs are never mentioned to the patient.
Elective surgery - well, long wating lists there!

2. The private system.
You pay your dues - mostly non profit funds - and pay a residual for everything if you end up in hospital.
Advantage - elective surgery has no waiting lists, food is better, nurses are prettier and more polite.

We have relied on the public system, only exception is the wife's cataracts, private system, AU $5K to get them done.

Anyway, to the main point of this post:
Wife is a UK born war chilld, father a visiting GI by the name of Tex Bowman.
Now Tex liked to spread his seed wherever he could, so my wife has plenty of half brothers and sisters in the USA.

She is concerned, a lot have fallen off the twig lately, some younger than she is.

My only response when she expresses that concern is . . . yeah, well, they do have a third word level health system over there!

[moonscape]

8. As an American on

Original Medicare, I have the up side of your both public and private: emergencies taken care of, no waiting for elective, can see anyone I want, excellent care with 2 teaching hospitals with 1.5 hr drive … but it’s not free. I pay a little less than 500/month but for that all my surgeries, cancer care over the last 9 years, nearly infinite scans and tests, etc and no out-of-pocket for any of it.

The sad thing is, we could all have that if the greedy insurance companies would take their paws out of our pockets.

[Blue Full Moon]

16. Greed is never good.

[JustAnotherGen]

2. My dad had a stroke in 1998

Black Friday - lost his ability to swallow, eyes teared uncontrollably - major. 8 days in his insurance ran out. They advised us to take him off life support.

My parents were execs in Corporate America and came from families that had the means to do things like buy them a house outright.

My mom said no. We went to Chase and I watched my mom get a cashiers check for just under a half a million dollars to prepay the cost.

The money ran out, and they told her to pull the plug - it was "hopeless". He walked out of the hospital on Christmas Eve.

That's why I'm proud of my " thank you for helping to get the ACA passed" certificate from President Obama. Not everyone has the means to do that.

No one should be told to pull the plug because the insurance was tapped out. No one - EVER.. He walked out - not in a wheelchair - put up a big stink about it.

What's the point of science and healthcare if everyone cannot access it and get a chance.

I'm so glad your son got a chance. But - many people did not and do not.

[homegirl]

6. My sister

was covered by Cadillac level health insurance. when it ran out after $2 million for surgery, chemo and radiation it was an additional $1.3 million* out of pocket to save her life!

* Huge chunk out of a carefully structured retirement plan!

[JustAnotherGen]

11. People forget

That insurance would run out.

[LoisB]

3. I am so glad for your child and hope he/she is doing well. Thank The Universe for Seattle Children's Hospital.

[angrychair]

7. Doing really well

In remission (wasn't cancer but that is the term they use once you stop getting flare ups) and currently doing cancer research at the NIH.

[LoisB]

14. Wow. That is so cool. I know you are very proud.

[angrychair]

20. Very

Wanted to add that when he finishing up his Eagle requirements in Scouts his Eagle project was to hand make a bunch of soft, colorful blankets and give them to Seattle Children's. The hospital already does this but they never have enough and it's something the kids get to keep as it often becomes very dear to them during their stay.

[Lifeafter70]

4. I have a similar story

In early jan 1990 my 12 year old son developed rashes under is eyes, elbows and knees. Hmo doc said it was the soap. I told him we had lupus in our family history, he said I was overreacting. I took him back to doc many times just to be told switch your laundry detergent. In early summer he stated to experience fatigue. By fall he was unable to walk two blocks to school without resting. In December he started to detereate to the point he could not walk a few feet. I had to threaten a lawsuit to finally get a test I had requested in January. Which came back positive for lupus. He was admitted to children's in Los Angeles two days later. He was diagnosed with dermatomyositis which is an autoimmune disease. Almost a year delay in treatment caused so much damage to his muscles. Spent two years in a wheelchair.
Edited to add: they only treatment at the time was to shut down his immune system during the flare. He spent three months in children's Hmo doc tried to have him released after 2 weeks. Getting him the needed physical therapy was a nightmare.hmo only authorized 90 days. I had to learn his daily exercises in order for him to regain his ability to walk. The medication was denied and than approved after many fights and changes in California health care laws

[LoisB]

15. Heartbreaking and disgusting that children (or anyone) have to suffer needlessly because some damned

insurance person denies coverage.

[dalton99a]

5. Health insurance execs are greedy murderous leeches and should be treated as such

[cadoman]

9. as grateful as I am for guaranteed insurance, it's shocking what a battle it is to file a claim

We pay out thousands a year in premiums, then when we need to cash in on some of that the contract is not honored...

When I look back at all the tens of thousands of dollars I've paid in premiums through the prime of my health, it just strikes me I could have put all that in a bank account, work with & pay health professionals of my choosing directly, and handle just about any expense.

We pay more than anyone. Why do the repukes want it to be this bad??!

[leftstreet]

10. DURec

[Squaredeal]

12. That's the American Way.

And don’t expect it to change for the better any time soon. There’s income taxes to be cut for millionaires on the agenda now.

[IbogaProject]

13. Which corp?

So sorry, but these firms need to be named and shuned any chance we get.

[angrychair]

18. It's state employee insurance

Called Uniform but it's owned by Blue Cross Blue Shield of Washington

[MontanaMama]

17. Self insured family of three here! When my son was 7 years old,

he failed a routine hearing test at school. The nurse called to tell me. My response was that he shouldn’t have failed it because he had had a tube placed in that ear a couple months before. I asked if he could be tested again. He failed test #2. We were offered a complete audiological exam at no cost at the local university. We didn’t have two nickels to rub together back then so we took advantage of the opportunity. Owen failed that third test and the tech who did the testing recommended we get into the ENT who placed the tube asap.

We were fortunate to get in right away and the news was not good. Owen had a large cholesteatoma (benign tumor) in his left ear and it was sitting on the dura of his brain. It had eaten away all of his hearing bones and he had zero hearing ability in that ear. Surgery was scheduled three days later. Our insurance plan would not pre-authorize the procedure stating that the tumor was benign and thus not an immediate threat. The surgeon sent documentation that the tumor would continue to grow into Owen’s brain resulting in permanent neurological damage. I threatened a state insurance commission complaint if surgery was not authorized immediately per the surgeon’s recommendation. Surgery was authorized at 4pm the day before the procedure. I cannot even describe the stress of this.

To make matters worse, our deductible was $12,000 and the surgery center wanted that up front to do the surgery. We had to get a HELOC loan on our house…and thankfully had a banker who would transfer that money to us at the 11th hour to make this happen.

Surgery was 6 hours long. The tumor was removed and Owen’s hearing bones were replaced with titanium and his ear drum was rebuilt. Very long story short, the surgery had to be redone 6 months later because the new hearing bones failed and had to be replaced. We had to fight again with the insurance company to get them to cover this. It was an insanely stressful year. I learned to use the state insurance commission to get them to provide benefits for which we paid dearly. What BCBSH of MT put us through was so unnecessary. And, I would fight them again tomorrow. Owen has almost perfect hearing in that ear…about 90%. He’s 19 now and we have to get that ear checked annually.

I consider myself to be deeply empathetic and I am amazed at what I do not feel for this man who was gunned down. It bothers me that I don’t feel badly. It isn’t right what happened and I know that. However, the events above are just ONE example of the hell that I have dealt with being self insured and responsible for every health care dollar we spend from premiums to deductibles to out of pocket expenses.

[angrychair]

19. So happy to hear you son is doing better

It's absolutely criminal to imply the surgery wasn't necessary because it was "benign" when it had already caused permanent harm.
Insurance companies are truly evil.

[LiberalFighter]

21. What was the insurance company?

Was it a private or government employer?

I had surgery denied under my dad's insurance. He was a government employee with Aetna insurance.

Several years later under my employers insurance I was approved because it was considered corrective surgery. My benefit person knew the ins and outs of the plan. It helped that the UAW made it happened.

[malaise]

22. Hell no indeed

On the other hand, hugs to the hospital and your kid

[pnwmom]

23. Thank goodness for Seattle Children's -- both to the hospital and the wonderful donors who helped

provide the funds for the children who need help.

I'm so glad you found the answer for your child's problem before he ended up with a shattered jaw or worse. But I'm not surprised it was Children's Hospital that had the answer.

For anyone who wants to help, here's info on how to give to Seattle Children's Hospital.

https://www.seattlechildrens.org/giving/

[Hekate]

24. KICK