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**greggo72** · 02-04-2005, 09:54 PM

Hi linda, My daughter Ariana has congenital kyphosis and has already has one spinal fusion (that failed) and will need to go back to get another one within a couple of months. The last surgery our doctor bill was $60,000 our insurance company paid $13,500, we recieved a letter from our doctor that said he could no longer accept our insurance due to "rising costs". We had to switch insurances from GHI to AETNA HMO. We pay alot more for Aetna and we have found out that alot of the top doctors for Kyphosis do not accept Aetna. We want the best for our daughter so instead of jumping into a second surgery we went to see Dr polly at the twin city Spine center in minneapolis and Aetna refused to pay for the visit we paid the airfare from ny and paid hotel and they made us pay for the visit and Xrays(we are $2000 in the hole for that trip) we got a nice letter from Aetna telling us to go see a doctor who just moved here from france!!! I hate how powerless we are I hate that we can't see the doctors that we want to see.. I hate that a pencil pusher with no medical degrees is making medical decisions for me... I hate that the insurance companies are heartless and don't care.. I was crying on the phone to the east coast supervisior and she told me sorry, its policy!!! I wish we could change the system but how? I nsurances are all about profit!!! I always thought I had great insurance.. It is great... until you have to use it!!!!!

**Karen Ocker** · 02-06-2005, 02:27 PM

insurance

I suggest writing to your Congressmen to push for insurance reform-otherwise nothing will change. Present your individual case.

Another helpful approach is to complain to your employer's HR dept. My husband's company has an insurance "advocate" who helps. Your state insurance comissioner may have an on-line complaint process against HMOs who refuse to pay. If your company is self-insured(they use regular medical ins companies though) the Dept of Labor has a complaint process.

http://www.dol.gov/ebsa/aboutebsa/main.html#section4

Some companies will pay if it is an unusual condition.

Karen

**greggo72** · 02-08-2005, 10:38 PM

hi i noticed that you had a surgery done at the hospital for special surgery in nyc by doctor -(i cant spell his name isnt that awful) that is the doctor i WISH my daughter could see, he is someone that every one recommends!!! BUT and its a big but... he doesnt take our insurance... it seems like the higher they are in the "food chain" (residents, fellows,surgeons,then chief of dept) the less insurance they take.. I was told that we could ask him to do a pro bono (another misspelling!!) but i hate to look like i have to beg for charity... My daughter has congenital kyphosis with hemiverterbrae t12-l2 she also has 1 extra thorasic verterbrae and 1 extra lumbar verterbrae and 2 extra ribs. she has had one surgery that failed and the wire they placed in her spine has now broken and none of the 4 doctors i have seen can agree on the next surgery she needs it has gotten very frustrating.... but i just spent 2000 to see dr polly in minneapolis and i cant afford to see another doctor that doesnt take my insurance.. i am suprised that i havent had a nervous breakdown yet my daughter is only 20 months old and she deserves the best treatment!!

**nikyergen** · 02-09-2005, 11:37 AM

We have three daughters will scoliosis and/or scheuermann's kyphosis. Because of the expense and the fact that insurances don't pay much on some of these surgeries, we turned to Shriner's Hospital. They have some of the best surgeons in the world. I would suggest that you investigate your closest Shrine Hospital. Your child will be treated regardless of whether you have insurance or not and regardless of your income status, at no cost to you. If you know of someone that is a Shriner, ask them about the nearest hospital. You can download an application off the internet or call them directly at your closest hospital. Don't be ashamed to use them, that is why they are there. We've had great results with them.

**Carmell** · 02-09-2005, 02:01 PM

I know this was posted almost a year ago, but I wanted to share an opposite experience.

Braydon went to an out-of-state provider for his TRP implant surgery. The hospital (only the hospital, no doctor fees) billed my insurance company nearly $75,000. The insurance company paid them $64,000. That is a HUGE percentage of the total billed being paid! My insurance is a self-funded insurance, managed by BC/BS of Utah. I don't know if that had anything to do with it, but I do know that other providers have not gotten paid with this high of a percentage. Interesting topic...

**nikyergen** · 02-09-2005, 04:04 PM

Greggo72,
Here is the web address for Shrine Hospitals: www.shrinershq.org. Do check them out. They specialize in children's orthapedics/cancers/burns. And if you daughters treatment is started before she is 18 yrs old, they will take care of it until she is 21 years old. It's a great organization and they do great work.

Some of the problem with insurances also is that they classify so many of these very expensive surgeries as experimental or trial and error, so they don't want to pay for them. My husband is a Shriner and they had this same discussion at their last meeting, just three weeks ago. You aren't the only one faced with insurance that won't pay for the treatments. Our oldest daughter needs surgery, but we can't afford the $$$ that is would cost, because insurance wouldn't pay for it.

Please check out Shrine Hospital. Your daughter is so very young and does deserve the best treatment available.

**greggo72** · 02-09-2005, 11:22 PM

I think it is pretty sad that a doctor takes NO insurance... lets be honest how much scoliosis surgery is... 100,000's of dollar... thats not an amount that a nyc police officer who's salary is $39,000 can afford, It seems like in the united states the dollar talks... even in things like medicine where the concern should be about the patient... I know that high malpractice suits might be partially to blame but all i know and care about is my daughter.. we just switched insurances, pay more per paycheck for Aetna HMO, 118.00 a paycheck.. and they fight us for everything even cat scans before surgery!!! we will be switching our insurance in january 2006 when it is our open season but our only option is to switch to an even more expensive insurance bc/bs and that will cost us 250 a paycheck. What choices do we have? I cant fight the insurance companies whose only thought is profit and have alot more money to give "elected officials" for their campaigns.. I would like to thank everyone for their advice we did apply to shriners we are still waiting for them to get back to us but the clock is against us our current doctors says ari needs surgery in the next 3 months so we might not have a choice but to simply accept what we have now. Cindy and gregg

**LindaRacine** · 02-09-2005, 11:29 PM

Hi Cindy & Gregg...

Just for the record, even when a doctor doesn't accept insurance reimbursement, one is still partially covered. It depends on the insurance plan.

I switched to HMO insurance a few years ago. I discovered quickly that I didn't like being at the mercy of some administrative person, making what seemed to me to be arbitrary decisions. PPO insurance is a lot more expensive, but I get to see any doctor that accepts Blue Cross insurance.

Regards,
Linda

**nikyergen** · 02-10-2005, 04:36 PM

Gregg & Cindy
Feel free to call the Shrine Hospital to find out the status of your daughters application. I did. They are very nicce people and are very understanding to your concerns. Don't be affraid to let them know your concerns. They actually treat you like a human being and not a number.

We understand the $100,000's for operation on a $39,000 income. It would take you and us a lifetime to ever pay that off. I just got an insurance payment for my daughter yesterday. Out of $290.00, they only paid $75.00 of it. I guess the reason we keep it is because of a catastrophic event, which we had one recently 30 days before our insurance was active. And, it does pay all but $50.00 out of over $300 of her prescriptions every month for her asthma. My husbands employer picks up 80% of the cost of insurance, we only have to pay 20%. So, just in the savings in prescriptions, we get our money back and then some.

With insurance companies forcing doctors/hospitals/labs to give such huge discounts is causing them to go under. That is why so many hospitals are in such dire straights. It still takes so many dollars to keep a hospital open. Tualitan Valley Hospital in Portland, OR, was forced to close because of this a couple of years ago. With what the insurances paid and what the insurance required them to write off they couldn't keep the doors open any more.

Anyhow, call the Shrine Hospital and check on your application. You'll be surprised it will be moved along with your daughters condition.

Nikki

**Celia** · 02-11-2005, 09:37 AM

Hi,

I'm from Canada, so we don't have insurance headaches - one less worry. I was wondering about your comment on insurance companies forcing doctors and hospitals to take huge discounts - who covers the difference ? Do the hospitals try to get the shortfall from the patients ?

Although we Canadians love to complain about being taxed to death, I am grateful that medical care is funded by the government. Although stories are rampant in newspapers of "brain drain" i.e., Canadian doctors moving to the U.S because of lucrative salaries, but I don't see that. Most of the doctors I know are living very comfortable lives in the wealthy district. I'm not begrudging them their wealth - they deserve it and have worked hard for it.

One of the things NOT funded by the government is dental. Dental is covered through insurance at the work place. We pay out of pocket to the dentist and then get re-imbursed by the insurance company. Depending on the treatment, we can get anywhere from 80% to 100% back within a week of the appointment.

I'm glad Shriners hospitals exist in the U.S. Are they funded mainly through donations ?

Celia

**nikyergen** · 02-11-2005, 11:16 AM

Celia,
When the insurance companies make the doctor/hospital to take huge discounts, there isn't anything or anyone to cover the difference. The patient can't be billed for the discount. That is why so many doctors are starting to refuse to accept certain insurances.

As far as the Shriner Hospital's go. They are funded 100% by donations. They are a not for profit organization. These funds are from estates that have been willed to Shriners and activities that the Shrine men do to raise money for the hospitals. They are a wonderful organization.

I have heard lots of horror stories about being able to get medical treatment in Canada because of the government system, but this doesn't sound like the case from you. It is nice to hear another side to the story.

Nikki

**Celia** · 02-11-2005, 03:50 PM

Nikki,

What horror stories have you heard ? I've never been refused treatment. As far as I know we have a universal health care system - even the homeless are entitled to treatment. Maybe some cancer patients have to wait 6 months for operations, but thats not unique to Canada. I'll let you elaborate...

Celia

**LindaRacine** · 02-11-2005, 10:50 PM

Hi Celia...

I don't know about Nikki, but I would say that what I've heard about the Canadian system is that one usually has a long wait to get into see a specialist. And, that there are so few scoliosis specialists who know how to treat scoliosis patients with prior fusions.

Regards,
Linda

**Celia** · 02-12-2005, 09:21 AM

Linda,

I can't comment on revision scoliosis specialists here in Canada because I have no personal experience to relate, but I would say that the pediatric scoliosis specialists are tops. My daughter is being treated at the Hospital for Sick Children by Dr. Hedden and he's the best.

As for long waits, I've never had that problem. When we discovered my daughter's scoliosis, I brought her to the pediatrician that week - the following week we had the appointment with Dr. Hedden. In retrospect, one week doesn't seem like a long wait - at the time it was the LONGEST week of my life. I wonder if I had taken her to emergency, whether she would have been treated sooner. In order to get an appointment with a specialist it's necessary to get a referral from a G.P. or Pediatrician.

Regarding my comment on long waits for surgery - I think if someone had cancer they would try to operate or treat them as soon as possible before the cancer spread any further. If someone had to wait 6 months before surgery - they might be dead.

Celia

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