Flaptrap - December 15, 2004

Health Insurance companies and docters will kill us one day

Yesterday I had several conversations with Rachel Ann.
Somehow we ended up talking about a misery our family went through almost three years ago.
Rachel Ann suggested I should blog on it in the hope it might help to get a change one day.
The basic line of the story is that the health insurance business almost killed our little Burger a few years ago.The health insurance in combination with our pediatricians office nursing staff.

This is going to be a long one.....

Burger was born with a genetic defect called Hirschsprung's Disease.Not that we knew it right away because no one at the hospital seemed to give a damn that he still had not passed maconium after 24 hours (which is one of the major first signs).They told me it was normal,especially in breastfed babies,no worry,just go home,get settled,no need to call the pediatrician,because they would just make me "panic and come in for no reason".
Once home,I called the pediatricians office anyways to confirm the birth and schedule for those required shots.The asked me about maconium,I said no,told them what the hospital said,and the pediatrician made me come in RIGHT AWAY,oh wait....no,two days later because there was no "hurry".Although,they said it was NOT normal for a baby not to pass maconium.So I made an appointment for the two days later.I the meantime,the Buger would not eat.All he did was sleep and ultimately the next day he started to puke up green stuff.
You know it,the thing that hap pends when your stomach is empty.So I made an appointment for the very same day and went to see my pediatrician.Or so I thought,he wasn't there so I had to see the NP.She told me some crap about "Anal Stenosis",poked the poor three day old Burger up the rear end,which resulted in him getting rid of about 2 gallons of maconium,told me to stop breastfeeding and send us home.He ate,was finally happy,but still no poopie diapers.We resulted to laxatives,which seemed to work for a while,then after a week,the baby looked like a balloon and stopped eating again.Puzzled I took a one week old Burger,back to the NP (Doc was out again,thats the problem with emergency appointments),she yelled at me for using laxatives and told us to switch to Nutremagen,some kind of expensive (10 bucks for a pint) formula,corn syrup based,which smells and tastes like cat food.Of course he wouldn't eat that at all.So,I went back to regular formula,actually the soy based crap,which seemed to work well.I also smuggled in some juice.Great...for about three weeks.....
Then he looked again like a balloon,called the Pediatricians office,and they told me to give him some laxative (rectally) and if I wanted I could call a GI.I did,waiting list:ONE MONTH!The only one who could have gotten us in faster was the pediatricians office,they refused,said,there was no reason to speed things up.Fine...I started to get sick,looked allover the INTERNET,Anal Stenosis didn't make sense AT ALL.Suggested that to the office,nope....there CAN NOT be anything else.
About three weeks later Burger got so bad,he didn't eat,didn't sleep,seemed to be starving but could not eat,and this time he looked more like a REAL BIG football.Back to the pediatrician,again no Doc,just the NP.She YELLED at me for not giving him the nasty formula,it was ALL MY FAULT,I did it all wrong and now he was in danger because of ME.She instantly called Children's Hospital for us to see a GI (wow....NOW they can??).We went there within the hour.And Dr.Meyers,god bless this WONDERFUL MAN!,just took ONE look and told me basically that the pediatricians office was full of crap,there was NO WAY he had Anal Stenosis,no,Hirschsprungs Disease most likely.He said I did it all right and the pediatricians office should have called Burger in a LONG time ago,because now it resulted into a dangerous situation.Threat:his colon could rupture and he could die.Great.....anyways,he ran some tests,a Barium rectal X-ray and confirmed HD pretty much right away but needed to do a colon biopsy to confirm for 100%.We went home with anemas,three a day,worked great,Burger improved instantly.The bioptsy was a week later and confirmed HD.Luckily only a short part of the colon was effected so the suggested surgery should take care of it forever,by removing the effected part.We were introduced to the surgeon,Dr.Bleacher,who made us come to his office two weeks later to talk about the surgery.
Now I am getting somewhere here......
So we went,talked to the surgeon,he explained it all very well and then we went to the "check out".Here is where the insurance monster comes in:
As it turned out,the surgeons office did NOT accept our insurance (which was at that point Guardian).Among two others (United Health care and Cigna) they did not work with them because they (the surgeons admins words)"are lousy in paying their bills,cause too much trouble and hassle".But to help us out,they would bill them anyways.In order to have the surgery scheduled we needed a "down payment" of 200 Dollars,until they got that from us,they refused to schedule,however we would get the 200 Dollars back should the insurance decide to pay.We didn't have 200 Dollars.We called the insurance and since there was no other surgeon for that specially under the plan,they agreed to pay for it anyways, the office just had to bill them directly.They even send me that in written,so I showed it to the surgeons admin,still:no 200 Dollars,no surgery.I tried to explain to them that it was a life saving surgery and that Burger needed it.No 200,no surgery.And no one wanted to work with us any further,not the insurance,they decided they had done their part,not the surgeons admin....no one.Only Dr.Meyers (the GI) nurse Kim offered help,she kept bugging the surgeons office,even tried to find us a different one,unfortunately nothing helped.
At this point you would probably blame the surgeons office,which I also do,but if the health insurance business wouldn't be so messed up,it would have been easier,even after they DID agree to pay.People without insurance are helpless and if you have no one to help you,you might die.The insurance companies have made doctors offices hard,tough,non caring businesses.....
We did get the 200 Dollars from Jim's mom (thank you Mom!)and Burger DID have the surgery at 5 month old.He is very fortunate to be one of the few with not many problems left.He does have some,but nothing is life threatening anymore.
It turned out that if I would have seen my Pediatrician,he would have recognized Burgers problem,he apologized for his NP's mistake.Few have experience with HD,thats a big problem.Many babies and children die before its diagnosed.
The insurance paid in full but then there was a problem with the discount system they work with,annoyed the surgeons admin and they refused to pay us back the 200 Dollars.I don't even know how to explain the discount crap the insurances are doing....one BIG company is controlling ALL the insurances and if a doc is part somewhere along that waterfall,they have to accept a discount.Which they refused...I don't know,but I had to threaten them with a lawsuit in order to get that money back.
We pay so much money....we pay almost 6000 Dollars a YEAR for insurance,not to mention all the out of pocket costs we have on top of that, and we get treaded like shit.The quality of service we receive makes me shutter.I personally can tell a book about it,not only because of Burger but also because of my own health problem I am struggling with for years now.I think I am lucky to still be alive because I educate my self pretty good and enforce my rights as much as I can,I have learned that the hard way after moving to the US and dealing with such a corrupt health system and doctors network.It is hard to find good health care,which is ridiculous,considering what we pay.Of course it could be worse........we could have no insurance and pay the full price or die.....then again,thats happening WITH insurance,too.Insurances refuse to cover more and more things.But raise the prices over and over again.We pay more per month,the benefits get less,the co-pay at offices get higher each year.We are now at 25 dollars per visit and 35 for a specialist visit.With three kids and me having to go every 6 weeks....thats unreal.Prescriptions are between 15 and 40 Dollars,I need one every month,and have to pay the full price.I depend on Synthroid to keep me alive (I have no Thyroid),they refuse to cover it,I had to use the generic which is proven to be crap and makes people sick.I recently went through that,thinking,generic is usually good,its cheap,lets go for it.I was wrong,they warned me,the doc warned me,the pharmacist warned me,I wouldn't listen and paid the price.For 20 Dollars more for the brand name (which the insurance refused to cover for),which I didn't have at that point because Jim had lost his job,I could have felt great.
Where do the 6000 Dollars per year go?
Every 6 weeks when I go,I see the billing:75 Dollars.I go about 10 times a year,thats 750 insurance has to pay.Jim hardly ever goes and the kids twice a year,the billing shows around 100 Dollars per child.Thats another,give or take 700 there.SO we are not even GETTING 6000 dollars per year of value!And then we still pay on top of that the damn co-pays.In a good (or better:BAD) year where we all get sick allot that comes to a good 800 bucks in co-pays for medicine and visits.
SO where does the money go??????
And why do people have to suffer so much and get NO quality care?
I don't want to pay more anymore.We used to pay 40 a month now pay almost 500 a month.If we at least could get BETTER care for it.But we can't,and doctors hands are bound to what the insurance tells them to do.
We have been through so many insurances and NOT a single one of them was worth the money we pay for!

Posted by jesspea at December 15, 2004 12:12 PM | TrackBack

I've become more adept at dealing with the medical profession by following a few principles:

1. I remember at all times that medicine is an experimental science. We're not created equal. We're not parts turned out on an assembly line.

2. I remember that I have a duty to read up on any problems that come along. The more I know, the better I can inform the doctor and make a case to the health insurance people when the time comes.

3. I ask my doctors what signs to look for that might signal an emergency. (Very important!) If they turn up, I notify him immediately or head for the ER.

4. I remember to be forgiving. Doctors are human. Sometimes the disease is not easy to diagnose. (E.g. I have discovered that I have a congenital heart condition. My EKGs were normal. Blood pressure was fine. Only problem was that I tended to tire out before others did. Then I started getting dizzy after exercising which proved to be the signal that led to a treadmill test, a stress echo test, and finally an angiogram. It was only in the last two tests that an actual problem was detected and the last one was needed for the diagnosis. I don't fault my previous physicians for not detecting it. It was subtle and not easy. Fortunately, we did catch it before it did any damage.) Refer back to rule 1.

5. My doctors know that I expect them to be my partners in my health care. If they don't act that way, I dump them. If, after a search of your conscience and a conversation with your pediatrician about what went wrong here and how you both might have worked better together, you still feel the doctor is not serving you (e.g. he brushes you off when you attempt to talk about this or makes you feel it was all your fault), dump him!

Posted by: Joel at December 15, 2004 03:50 PM

As for the insurance providers, they have no business overriding a doctor. If they don't like the diagnosis, they should arrange for an immediate second opinion. If the second concurs, they should shut up and pay for it. If the second disagrees with the first, then a third opinion should be summoned. That one will decide.

I think that belongs in a Patients' Bill of Rights.

Posted by: Joel at December 15, 2004 03:52 PM

I can't begin to describe the incredible feeling of desperation and helplessness I had back then. Knowing your little baby can die and being stumped at every turn by fucking paperwork is my own private hell now.

I did a rather long write-up and rant about the thyroid surgery a while ago. Interested parties can read it here.

Posted by: Jim at December 15, 2004 04:03 PM

It upset me greatl to read the ordeal thte family underwent. In some ways you are lucky. There have been families blamed for the death of the child, and accused of Munchausen Syndrome by Proxy.(http://www.msbp.com/review_vindicates_mother.htm)
(http://www.msbp.com/MSBPdiscredited.htm) both from (http://www.msbp.com/this site)

Some women have gone to jail, only to be exonerated sometimes years later.

Posted by: Rachel Ann at December 16, 2004 05:03 AM

Your insurance story made my skin crawl. {{{hugs}}} I am so glad that Burger finally got the surgery he needed. Going through the hoops to get it done must have been a nightmare.

Posted by: Kate at December 16, 2004 08:55 AM
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