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I am so bleeping pissed off right now UPDATED


Kathryn
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I've been going back and forth with insurance all week because it's January and we have to defend our doctor's medication choices all over again. My autistic son is on Intuniv (two and a half years now) and it has worked wonders for him. He went from multiple violent tantrums per day to none. I just got the call that the insurance "review board" decided that he should go on a stimulant instead. What *#^%ing gives them the right to decide that? I do not want to put my prepubescent child on a stimulant unecessarily just because it's cheaper for the insurance company. His doctor appointment was last Friday but was rescheduled for this coming Monday. I've been dealing with a nurse at the office and am hoping the doctor can help. They are mailing us an appeal form but we are fast running out of medication. Why is our healthcare system like this?

Edited by Kathryn
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I hear you. Dh has been fighting the insurance company over his prescription. I asked why even bother with the doctor anymore; just let the insurance handle your prescriptions and it would save time.

 

That was total sarcasm, by the way.

 

Good luck with your appeal.

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:grouphug:

 

Yup. We have a family member with complex, chronic problems. I've been doing this for twelve years now, and in some ways it is worse than ever. Every Friday I spent at least an hour on medical bills and insurance issues, if not more. 

 

Sometimes I do eventually win, but not always.

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I'm really sorry.  That is sooo frustrating, and time consuming as well.  Don't give up yet.  Ask your doctor and every other "expert" who has been part of your son's treatment to write an official letter to your health insurance company stating how this is absolutely necessary.  You write one too.  We have done that before and were able to get the appeal approved.

 

In the meantime, sometimes the pharmacy itself will give you a week or so to cover you (granted, you may have to pay for it out-of-pocket if it's not approved in the end).

 

Good luck and I hope it works out for you!!

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Well, you can get the meds, but you would have to pay full price.

 

(OP, I would be livid!)

Yeah, with the $20,000 they get between what we and DH's company pay them per year, they can "cover" this $300 medication. And I put it in quotes because medications count toward our deductible so they weren't going to be paying for it right now anyway since its January. His secondary Medicaid would have picked it up but the pharmacist called last night and said she had called them and they said they wouldn't pay for it as long as the primary insurance wasn't decided on what they'd do.

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Yeah, with the $20,000 they get between what we and DH's company pay them per year, they can "cover" this $300 medication. And I put it in quotes because medications count toward our deductible so they weren't going to be paying for it right now anyway since its January. His secondary Medicaid would have picked it up but the pharmacist called last night and said she had called them and they said they wouldn't pay for it as long as the primary insurance wasn't decided on what they'd do.

 

Yes, we've experienced that too. If primary keeps it in limbo, Medicaid can't/won't do anything.

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Make sure the doctor writes a letter that it is medically necessary.  Also, send it certified return receipt because they will deny your appeal because they'll claim they didn't receive it.  It's super helpful to say, "Really?  Because someone named Juan in your mail room signed for it six weeks ago at 10:02am."

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Until there are a few class action lawsuits won against insurers practicing medicine without a license, we are screwed. They argue they are not practicing medicine, just deciding what they will pay. Unfortunately, for most, insurance payments are the only option.

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We've been through similar, although not to that extent. In our case, the insurance was happy to pay for the brand name instead of the generic, which is absurd, but it was really just annoying and not actually making a difference in treatment, I'm so sorry you are dealing with this, and I agree that it should be illegal for the insurance company to practice medicine. The fact that their contracted Doctor wrote the script should be enough; I'm sorry it's not.

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Hate this. I will seriously pray for your son.

 

I experienced similar recently. I have a connective tissue disorder. My joints are hypermobile, and I live with chronic pain due to this and due to bone spurs in my spine that press on nerves, causing hand numbness.  A judicious combination of exercise, massage, and chiropractic care keep me straight (not all twisted up) and with a minimum of pain. The chiropractor also keeps my hands from being numb, because the adjustments literally keep the spurs lifted OFF the nerve. I only need to go in once every 4-6 weeks--it's not like I am in there daily or anything. Most insurance companies will pay for chiro care, but mine will not. A panel decided that they know better about my condition and that ongoing chiro care is not appropriate EVER, for anyone. They will only pay for chiro care in response to an injury. These people, who have never seen me, never seen my MRIs or x-rays (though they certainly have seen the reports and don't care), and have never adjusted me, somehow know better than my chiropractor, GP, and orthopedic specialist. Really?!?!

 

So, I feel your pain. And I will pray for your son.

 

:grouphug:

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Kathryn--

 

I'm furious for you, too. Am I correct that guanfacine is the generic form of your son's medicine? If so, PLEASE check out this link and the medication list on it. (Guanfacine is listed.) If you live near any of the stores that participate, you may be able to get it at a significant discount, depending on dosage, etc. Good luck!

 

www.myrxcare.net

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Thank you for the sympathy and suggestions.

 

He tried the generic last year in January when it first came out and they switched it without telling us. By the second day, he was having violent tantrums again. So his doctor has been writing the prescription for medically necessary brand only since then.

Edited by Kathryn
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Thank you for the sympathy and suggestions.

 

He tried the generic last year in January when it first came out and they switched it without telling us. By the second day, he was having violent tantrums again. So his doctor has been writing the prescription for medically necessary brand only since then.

 

Aw, I'm sorry. We've had some really crazy things with medication costs lately, including for generics, so I was hoping there might have been a way to work around the insurance approval. You and your family have enough to deal with already. You don't need this kind of BS.

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Be sure to also contact the drug manufacturer directly.  They will sometimes provide large discounts as they have a vested interest in keeping a patient using their brand name meds.

 

Edited to add:  Looks like Shire Pharmaceuticals does have a program to help:

 

Intuniv

Shire Cares is dedicated to assisting patients with limited financial resources. If you don’t have prescription insurance or are having trouble affording your Intuniv® prescription Shire Cares may be able to help.

Offer provided by:
Shire

For information about Shire Cares benefits and eligibility, please call 1-888-CARES-55 (1-888-227-3755).

 

Edited by Pegasus
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Be sure to also contact the drug manufacturer directly. They will sometimes provide large discounts as they have a vested interest in keeping a patient using their brand name meds.

 

Edited to add: Looks like Shire Pharmaceuticals does have a program to help:

 

Intuniv

Shire Cares is dedicated to assisting patients with limited financial resources. If you don’t have prescription insurance or are having trouble affording your Intuniv® prescription Shire Cares may be able to help.

 

Offer provided by:

Shire

For information about Shire Cares benefits and eligibility, please call 1-888-CARES-55 (1-888-227-3755).

Thank you for this! We'll look into it. It looks like I need proof of denial from insurance, which primary is already sending us in the mail. I assume I'll need to get one from secondary also. At any rate, I'll print this out and bring it to the appointment on Monday.

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Insurance is so frustrating! My dad had a problem with his after his kidney transplant. After several months of taking the very expensive anti-rejection meds, the insurance company refused to pay for more saying that he had reached the lifetime limit of coverage for them. Ummm...6 months of immunosuppressive drugs is all you get after an organ transplant?! He has to take them for the rest of his life. He managed to get it straightened out but he was down to one or two days left and had to scramble to get prescriptions filled over a weekend before he ran out. My parents were starting to panic because there is no way they would have been able to afford the several thousand dollars a month the drugs cost.

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Insurance is so frustrating! My dad had a problem with his after his kidney transplant. After several months of taking the very expensive anti-rejection meds, the insurance company refused to pay for more saying that he had reached the lifetime limit of coverage for them. Ummm...6 months of immunosuppressive drugs is all you get after an organ transplant?! He has to take them for the rest of his life. He managed to get it straightened out but he was down to one or two days left and had to scramble to get prescriptions filled over a weekend before he ran out. My parents were starting to panic because there is no way they would have been able to afford the several thousand dollars a month the drugs cost.

 

Oh my goodness! That's so awful. I hate our system :(

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We've been through similar, although not to that extent. In our case, the insurance was happy to pay for the brand name instead of the generic, which is absurd, but it was really just annoying and not actually making a difference in treatment, I'm so sorry you are dealing with this, and I agree that it should be illegal for the insurance company to practice medicine. The fact that their contracted Doctor wrote the script should be enough; I'm sorry it's not.

My son's pediatric neurologist told us that generics did not have to be 100% whatever the brand name was, that there is an "acceptable" range they have to be in, and some places may be at the lower end of the range. You never know, with a generic, if the pill is exactly the same dosage as the brand name, and it can affect some folks. He hated that insurance would only cover generic depakote for our son.

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Until there are a few class action lawsuits won against insurers practicing medicine without a license, we are screwed. They argue they are not practicing medicine, just deciding what they will pay. Unfortunately, for most, insurance payments are the only option.

 

Definitely should be ruled practicing medicine and over-reach. Providers get hate mail from insurance companies telling them that they've prescribed non-preferred stuff for patient x. What's really stupid is that in some cases, they are in an ED setting seeing the patient ONE TIME and that patient will not be on the med indefinitely. A total misfire on the part of the insurance company. Just take two seconds to see that the provider is an ED provider who will never see your patient again and JUST PAY IT. 

 

I think the doc should have final say for non-ED treatment too, but micro managing providers who don't see the same patients over and over with a hit list is a clear misapplication--the smack down illustrates how wide of the mark the insurance companies really are. 

 

OP, I am so sorry. We have a problem with two different generics of the same drug having wildly different results. I don't even know what the brand name is like because we tried the generic first. We have to ask each time if the Rx is for the peach pills or the yellow ones to make sure it all works okay. I would be livid if they nixed the drug entirely--it's not easy to get this right.

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I stayed home with my sick baby. DH took him in. The doctor said that until we try THREE different stimulants that the insurance company won't pay for Intuniv. And that each of those trials has to be a minimum of 4 weeks per dosage. If no effect, increased dose for four additional weeks (so at least eight weeks per medication). The only thing that can decrease the time is documented adverse side effects. We will have to drive the two hours to see the doctor every 1-3 months during all this (we go every six months now). But before he can go on the stimulants, he has to see a cardiologist. No idea how long that's going to be, so he'll be without any meds from when I run out until then.

 

So, I hope they're happy about all the money they're saving.

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I stayed home with my sick baby. DH took him in. The doctor said that until we try THREE different stimulants that the insurance company won't pay for Intuniv. And that each of those trials has to be a minimum of 4 weeks per dosage. If no effect, increased dose for four additional weeks (so at least eight weeks per medication). The only thing that can decrease the time is documented adverse side effects. We will have to drive the two hours to see the doctor every 1-3 months during all this (we go every six months now). But before he can go on the stimulants, he has to see a cardiologist. No idea how long that's going to be, so he'll be without any meds from when I run out until then.

 

So, I hope they're happy about all the money they're saving.

 

And they want you to do that BS every freaking year? I'd call your state insurance ombudsman and see if that's allowed. Because you have so much free time. :/

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She said that if he does the three stimulants and fails them so gets to go back to intuniv, we shouldn't have anything but perhaps paperwork headaches each January because he'd have documented problems with them. But, in the meantime, our family and HE will be losing at least half a year of life being a guniea pig.

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