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My Son is going through a lot right now, since mid December he’s only been sleeping 4-6 hours a night. He was also being very aggressive towards my W and off the charts hyper.

The Dr prescribed Risperidone, it has really helped with behavior but not sleep. The insurance company rejected it needing a pre-authorization. It was around Christmas and things were moving slow so we paid out of pocket. Now it’s time to refill and insurance is still rejecting it. They are saying the Dr should try Abilify first.

Here is the rant. It’s not the money it’s the principle.

Aetna has never examined my Son how do they know what the Dr should do?

The pre-authorization is to make sure the medicine is a medical necessity. Isn’t a prescription an authorization?

Isn’t a prescription due to a medical necessity?

This is very frustrating. Can someone help me understand?

Welcome to my world of hating insurance companies for trying to pull this crap. Some insurance companies have more of a reputation for doing this than others. I've heard endless stories of people being denied medication benefits because the doctor (who actually sees the patient) wants to try a medication that, in their book, has a better outcome. A lot of times it has to do with what's off patent vs. what's on patent.

I have two medications that insurance won't pay for, so I have to pay out of pocket. One is from my dermatologist (a foam used to treat a patch of seborrheic psoriasis where other treatments have not worked), and another is for my Xanax. The Xanax is such a stupid story... I use it for occasional panic attacks and anxiety; Xanax comes in several formulations, one of which is a tablet that dissolves orally under the tongue, so enters the bloodstream faster, waving off the panic or anxiety quicker and before it gets so out of control that I need to take more to get on top of it (I'm already on three other psych prescriptions on a daily preventative protocol, but sometimes I need a rescue med). But insurance won't pay for the orally-dissolving tablet; they'll only cover the regular tablet you swallow and takes longer to take effect. So yea, I pay out of pocket for those two.

We have a dear friend who has Crohn's disease. Her insurance company made her do a trial of I don't know how many months with the first generation Crohn's meds. She was miserable. Once she proved she'd tried the first generation meds and not gotten relief, then her insurance company covered Humira and she's been in remission for many years. But she had to go through that trial before they would. Because the first generation drugs were cheaper.

I'm sorry your son is going through this. When you're having psych issues, sleep deprivation can exacerbate things - you'd think they'd see this.

We had this issue with a medication for my daughter's eczema and psoriasis. I called the doctor's office in frustration, and they immediately sent a letter explaining why the medication was necessary. Then insurance paid. ($950 for one tube of ointment!)

Have you told your doctor that insurance is not paying? Maybe he/she can intervene.

Insurance companies suck.

The health care system is ridiculous.

Something has got to change.

[This message edited by OwningItNow at 2:26 AM, Friday, January 20th]

Have you told your doctor that insurance is not paying? Maybe he/she can intervene.

Yes we have a team of doctors working on his case. The Doctor has re-submitted the pre-authorization a couple time and finally was told why it’s rejected, should have tried Abilify first. (Sniff sniff, do I smell collusion?). Something smells. It’s $4 a month at Walmart that’s not a big deal but they shouldn’t make health care decisions by looking at a computer.

Our quality of life has been so bad with the lack of sleep they are looking into night nursing for us. That’s not unusual we had 24 hour nursing for 5 years, we just don’t want to go back there.

But, we have had 2 full nights in a row so we might be turning a corner.

The Insurance companies 'practicing medicine without a license" is a HUGE thing for me. How dare they dictate and override a doctor's RX! Something needs to be done about this. I've made several calls to my elected officials about this on behalf of a young man, a type one diabetic as his health care provider has STOPPED paying for insulin! They tell him to 'go to Walmart and get the over-the-counter epi=pens, which he cannot use. Even if he could, the epi pens are $49 each at Walmart and he uses 3-4 pens per month. He works and is a full time student and has serious problems with diabetes. He requires a night medicine because his blood sugar can go too high or too low when he sleeps. Some Type one diabetics do not wake up when that happens.

So yeah -- I consider this a HUGE problem in our country and the insurance companies have way too much power.

So yeah -- I consider this a HUGE problem in our country and the insurance companies have way too much power.

In my country, everyone is required to have health insurance (subsidized for low-income people), and there is a law stating the minimum requirements for a comprehensive plan. No one can be denied, and there is no such thing as 'pre-existing condition'.

There is also the possibility to buy extra insurance on top of the required, like for example the ability to go to any hospital in the country instead of just in your state, or for 'alternative' therapies, etc.....

There is a list of approved drugs that can be prescribed in the country (created by pharmacist society) and these must be covered when prescribed by a doc.

So I get so sad when I hear stories like these, because they really shouldn't happen. If the drug is legal, isn't it there to be prescribed? And shouldn't it be the doctor who is the one prescribing it?

Sadly, the reality is that health care is a business and not a right

yep, I totally hear you Tanner.

My methylphenidate ER (Concerta, I get generic) is $180 a month- $6/day for generic ADHD shit!!!! I'm in the deductible phase of my insurance and have to pay the whole thing for now. BUT... this is no-brainer basic meds here. I'm working with my doctor to get a different, cheaper way to manage my ADHD. Currently I'm taking short-acting methylphenidate leftovers from a family friend who switched meds and had a 90day supply leftover. Self medicating is scary, but it's saving me $6/day. I'm currently only taking it in the AM and after lunch so I can sleep.

Speaking of sleep, I've been using a CBD-THC-melatonin gummy to sleep at night and it really helps to take the edge off. It's a low dose (I'm only taking ~1/3 of the gummy a night), but it works really well.

Any time insurance denies a Rx for PA, make sure the Office is actually doing the PA paperwork.
I have been on both sides of this and it is insane, and frustrating.

I currently am on an injectable weekly for RA, the cost is 4K a month, I have to get a PA completed, and then it's still like $800/month, then I have to apply for a copay assistance program, and that consists of 4 questions, do I have insurance, do i have a secondary insurance, blah blah blah, oh yah you qualify the cost is now free.

So make sure you are calling the offices to have them complete their side of their paperwork. Often the offices hate doing the paperwork and will just not do it unless you ride them. If still denied ask the manufacturer what is required to obtain the PA, and specific documentation needed.

Also ask about assistance programs.

Thanks Tushnurse, the Dr has resubmitted a couple times and they finally told the Dr she should have tried Abilify first. It’s only $4 a month at Walmart so I don’t need assistance, I just don’t like the insurance dictating care.

The Dr is an approved provider by the insurance company but yet they don’t trust her.

I'm really sorry your son is going through this. I don't know who I have more sympathy for - your son or you and the rest of your family.

Given the intersection of federal and state law, pharmaceutical prices, media, and campaign funding, the solution is political, IMO.

One action that is not electoral is to complain to your state's insurance commissioner and pharmacy board. It takes a lot of energy, though, and people who are stymied by their insurance companies generally don't have a lot of energy to spare.

[This message edited by SI Staff at 5:55 PM, Friday, January 20th]

I'm sorry Tanner that sounds incredibly frustrating.

An aside (and without intending to be political), as a Canadian I truly cannot comprehend how unnecessarily complicated the American healthcare system is. I don't think our system is faultless, by any means, but I cannot imagine having an insurance company dictate my family's healthcare choices.

Oh please let me chime in.

I've been a nurse for almost 35 years. I'm the mama of a 31 year old disabled son. And my frustration with insurance companies and their bullshit cannot even be measured.

I worked for an OB/GYN who had completed a surgical residency before his OB residency. He had been practicing for over 30 years when I worked for him. The man knew what tf he was doing. But we had to run in all the circles and waste so much money doing procedures that were never going to work so that we could finally do what my doctor knew needed to be done in the first place. Need a hysterectomy? No, you sure don't. You need to try birth control pills for 6 months and then have an endometrial biopsy and then a D and C and then maybe we'll approve that hysterectomy.

My son has epilepsy. He had his first seizure when he was in 2nd grade. He's been on at least 25 different medications and/or combinations of medications. He is medication resistant. And you would just not believe what I have gone through in this boy's life to just try to get his meds. JM's job changed insurance companies every 2-3 years and we'd have to go through the whole damn prior auth process again. One of my favorites was when the new insurance company denied his primary medication. They sent me a very helpful list of meds to try instead. Half of them he'd been on and failed. 2 were the other 2 meds he was currently prescribed. One he had a documented severe allergy to and the last one was so old and full of side effects nobody has used it in 20 or 30 years. Great, great. Thanks, Aetna.

Just the copays for his meds ran $250 monthly. The retail price was over 2K a month. Thankfully he qualified for Medicaid and SSI due to his disability. That's when things got really fun. Because JM's company decided to require mail order pharmacy w/90 day supply for all maintenance medications. They gave us a huge break on the copay so we only had to come up with $650 for the 3 month supply. Medicaid will only cover a 30 day supply. HR suggested we just go to retail pharmacy where the insurance would deny and then Medicaid would eat the entire cost. And then she said that maybe it would be better for everyone if I just took him off our family plan and just let Medicaid be his insurance. Oh but we'd still be paying the same premium because it was an employee plus spouse plus however many kids you had. Oh, then we got into the battle over generic versus name brand.

And do not EVEN get me started on the managed care companies dictating if someone gets to have skilled rehab and how long they will cover. We have literally had a patient whose insurance cut her benefits, discharged because her family couldn't pay. Her son took her straight to the ER. She was admitted to ICU and spent the next 19 days there. Came back to us, and insurance cut her after 10 days again. Just infuriating.

Tanner I'm sorry about your situation. And I totally understand where it's the principle, not the money. And here's the thing I know. Abilify and risperidone are not interchangeable. There are stimulating antipsychotics and sedating ones. Abilify is one of the stimulating drugs. If your son needs help sleeping and calming down then Abilify would be the last one I'd want.

Ugh. It's madness. Insanity. I hate it. And I have to deal with it every day for a living.

HFSSC

My Son has epilepsy and autism. We did genesite testing and know that he doesn’t metabolise certain types of medicine, or resistant to it. Stimulants and pain meds are ones he’s resistant to.

Here is just a few of his medications

3 Trazadones

10mg melatonin

Clonadine

Clonasapam

Respiradone

Depakene

Prescription THC / Canabis oil

He weighs 95lbs I would be in a coma if I took that much. He falls asleep and after 2-4 hours he is up and running.

We have had 3 nights in a row now.

[This message edited by Tanner at 3:47 AM, Sunday, January 22nd]

As a nurse it is part of my job to write these pre authorizations for medications and procedures, Believe me when I tell you that I feel like I have failed the patient when I don't get an approval.

There are several ways we request a pre authorization. One is a website called Cover My Meds. Insurance companies prefer this, but I very often get an automatic denial as soon as I type in the medication, unable to even finish the process in that platform. Then, the paper/fax option. Getting the right acceptable paper form is a crap shoot and I very often just go to the next step, the verbal request for authorization, getting a different answer/reason for each live person I talk to. But each time I work my way through the process of application, appeal after appeal and eventually the dr will to do a peer to peer review and still often get a denial.

An example of insurance company stupidity. Insurance company denied, multiple times, an in office procedure costing several thousand dollars which could save patients foot. SAVE A LIMB! Eventually this insurance company may be paying for inpatient surgeries to try and save foot, eventually an amputation, ICU, rehab, PT, OT, prothesis. How can they not see how wrong and stupid this is?? Where is common sense and the well being of the patient??

I am convinced it’s the insurance companies playing the odds. Many employers switch insurance companies every couple of years looking for a better deal. The insurance companies try to avoid paying for the best, but more expensive, option in hopes that by the time that option is unavoidable another company will be paying for it.

I think also that the majority of people aren’t medically fluent, nor do they know their basic rights. So they will give up and accept the insurance decision rather than fighting it.

Again, just insanity.

Ugh, I just heard another story yesterday that reminded me of this thread. I have an acquaintance who was recently diagnosed with SIBO - off the charts with regards to his testing. She was with a large HMO company whose doctors basically blew her off when she went out of network to get the testing. She decided to do the elemental diet, which was misery, and maybe got a 20% relief.

So she changed insurance companies during this last enrollment period, got a new doctor who confirmed this diagnosis and wants to treat it with the antibiotic approach. One of the antibiotics (of two recommended) was denied coverage by her new insurance company and will cost her $2500. I asked her if the doctor's office had submitted for a PA for the med, and she said she wasn't sure. I told her to message the doctor and tell them to do this. Unfortunately, the other antibiotic hasn't been available at the pharmacy in over a month. She said she can probably get a coupon from the manufacturer, but I told her she really needed to pursue the PA.

The elemental diet and antibiotics are the only approaches to treating SIBO; she's tried the first one, and clinically needs the second one. I get so pissed hearing these stories that I want to start making calls for people.

As Tanner said, it's more the principle of the issue, as opposed to the money, although for most people, the kinds of costs we're talking about are not chump change.

I was going to add more stories to this but decided to save you all the eyestrain. But, you are so right and it is all so very, very frustrating.

My friend's son was DX with epilepsy in August. It has been a nightmare for her (and her son's medical team) dealing with the insurance company. And the school district but that's another story.

My grandson is finally getting his Vyvanse but not until my daughter spent a few months and many tears pushing, pushing, pushing. My daughter is a near genius IQ, very well spoken, a fighter from the day she was born. So my grandson will be OK but I can't stop thinking about the kids who don't have parents who were blessed with the skills necessary to come out on top in a battle with the corporate world. It saddens me deeply.

My heart goes out to all of you and I wish I was in charge of everything and the first thing I'd do is make sure every child in this country gets whatever medicine their doctor says they need, for free, with no questions asked.

There used to be a time that attorneys were respected. Not anymore. There used to a be a time when teachers were respected. Not anymore. And now we've added another profession to that list: doctors. They don't get to practice medicine anymore, they just follow protocols. It's a crime.

Good news, the Dr went to bat with a peer review and got it approved. Our Son is a complicated case, he doesn’t fit in their little box.

My W is an absolute Warrior Mom, she has battled this stuff his whole life, she has lobbied in Austin for change, and got some things done.

That is good news Tanner
And I think we are all in agreement when we say the insurance company should have zero right to dictate care.

Too many people got their hand 8n the pie so to speak.

Do you know how many meds I had to fail before qualifying to try a biologic for my autoimmune disease?
8. Yes 8. In the meantime jad to deal with hair loss, liver function getting wonky, and severe muscle cramps (some that happened while scuba diving).

Glad you found a med that seems to be helping. Fingers crossed its a cocktail that works for a good while.

Thankfully my W stayed on them, I was ok with paying $4 a month. My said we need to fight for $4 or $4000, she is right.

Good news is we have close to a week of no aggression and sleeping all night. The first couple days he sat staring off and drooling. I don’t like it, we need a balance but I don’t want him to lose his personality. So we pulled back the increase and will titrate up and that has worked great so far.