I am so bleeping pissed off right now UPDATED

[OnMyOwn]

That makes me so mad! Can you pay for the intuniv out of pocket while you are giving the other medications a "trial"?

[Kathryn]

That makes me so mad! Can you pay for the intuniv out of pocket while you are giving the other medications a "trial"?

No :( we don't have that kind of extra money.

[Carol in Cal.]

How horrible.

 

Calling this a 'system' is an insult to the word.

 

I hate this stuff.  So very sorry to hear about it.

[Valley Girl]

That's monstrous. They're making your family suffer needlessly. If you've already tried the other stuff, why on earth won't the insurance company accept that paperwork? The people who make these decisions should be forced to sit in a room and see first-hand the kind of violent tantrums you mentioned your kiddo and family endure when he's on the wrong meds. Every day. Maybe that would change their penny-pinching tune.

Edited February 1, 2016 by Reluctant Homeschooler

[Farrar]

I'm another mad on your behalf. Insurance and healthcare are so messed up in this country in every way.

[Kathryn]

What scares me is he's now 73 pounds and I'm 100. When we tried switching a years ago I had a lot of trouble physically restraining him and he was ten pounds lighter.

[MercyA]

I'm so sorry, Kathryn. Have you tried contacting the manufacturer? Their website says:

 

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

The medicines available through the Shire Cares Patient Assistance & Support Program are:

• CARBATROL® (carbamazepine) Extended-Release Capsules
• FOSRENOL® (lanthanum carbonate) Chewable Tablets
• INTUNIV® (guanfacine) Extended Release Tablets
• LIALDA® (mesalamine) Delayed Release Tablets
• PENTASA® (mesalamine) Controlled Release Capsules
• VYVANSE® (lisdexamfetamine dimesylate) Capsules CII

[creekland]

Nothing to add except I wish it were different for all the reasons already stated.  There's a reason I abhor insurance companies with their eye on profit alone.   :grouphug:

[Alessandra]

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.

No 4 letter words at WTM, so just Good Grief!

[chiguirre]

What scares me is he's now 73 pounds and I'm 100. When we tried switching a years ago I had a lot of trouble physically restraining him and he was ten pounds lighter.

After having to take GW to the Mental Health ER and a week in the hospital to get his behavior under control, my insurance company has stopped fooling around with his meds. I think the bean counters can understand just how bad the tantrums can be when they have to pay for their consequences.

 

OP, make sure you know which ER you have to go in case of a crisis and if you can call 911 for mental health crisis intervention before you run out of the meds. I'd also make sure the door of the room where you and your other kids can take refuge is strong enough to withstand sustained kicking (BTDT, lucky not to have a scar).

[Kathryn]

<p>

 

I'm so sorry, Kathryn. Have you tried contacting the manufacturer? Their website says:

 

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

The medicines available through the Shire Cares Patient Assistance & Support Program are:

• CARBATROL® (carbamazepine) Extended-Release Capsules
• FOSRENOL® (lanthanum carbonate) Chewable Tablets
• INTUNIV® (guanfacine) Extended Release Tablets
• LIALDA® (mesalamine) Delayed Release Tablets
• PENTASA® (mesalamine) Controlled Release Capsules
• VYVANSE® (lisdexamfetamine dimesylate) Capsules CII

DH went into the appt with the paperwork expecting to go that route. The doctor recommended doing it this way. Relying on the manufacturer's good graces, hoping we get accepted for help, and having to reapply yearly (if the program continues) is a gamble. And having to go through these med changes after he's gone through puberty and is much bigger than me is a less desirable possibility than the horrible one we are facing now. Basically, she made it sound like it was now or when he's bigger.

[Kathryn]

After having to take GW to the Mental Health ER and a week in the hospital to get his behavior under control, my insurance company has stopped fooling around with his meds. I think the bean counters can understand just how bad the tantrums can be when they have to pay for their consequences.

 

OP, make sure you know which ER you have to go in case of a crisis and if you can call 911 for mental health crisis intervention before you run out of the meds. I'd also make sure the door of the room where you and your other kids can take refuge is strong enough to withstand sustained kicking (BTDT, lucky not to have a scar).

I was going to "like" this, but I don't like it. Just thank you for the tips. I hadn't thought about that. It's been so long since that was our daily life.

[MercyA]

DH went into the appt with the paperwork expecting to go that route. The doctor recommended doing it this way. Relying on the manufacturer's good graces, hoping we get accepted for help, and having to reapply yearly (if the program continues) is a gamble. And having to go through these med changes after he's gone through puberty and is much bigger than me is a less desirable possibility than the horrible one we are facing now. Basically, she made it sound like it was now or when he's bigger.

 

Ah, I'm sorry.  :(

[Anne in CA]

This makes me so angry on your behalf. These people suck. A lot. I'm sorry.

[Jan in SC]

Did the doctor try to appeal and state the medical reasons for avoiding the stimulant?

[zoobie]

Would your doctor recommend in-patient care to tweak his meds? That type of cost could cause the insurance company to rethink. Brainstorming. We have to jump through ridiculous hoops for clients because of stupid insurance, but they're not children. Argh!

[Kathryn]

I wasn't there so I don't know how the conversation went, but I'll say that she has not been my favorite doctor (this is the third developmental Ped he's had). This is actually the last time he will see her, as she informed DH that she's starting her own practice and his next appt in just a month will be with a nurse practitioner. Since we're being shuffled around yet again, I'm going to ask his regular ped if they can try to get us in to an office in our city when they call with the cardiologist referral. This whole thing is just an awful mess. I get sick to my stomach whenever I think about it.

[ktgrok]

Perhaps you can explain things to the cardiologist and see if he can find a reason he can't go on stimulants?

[Jan in SC]

Ask his regular ped if he can get you samples to last for awhile, or if he will call with an appeal. The regular ped can reach out to the drug rep for more samples.

[OnMyOwn]

Did the doctor try to appeal and state the medical reasons for avoiding the stimulant?

Yes. Are you sure the doctor has done everything she needs to do to advocate for you? If you are not thrilled with this doctor, try another. Last year, we had denials for my son's allergy spray. It's something that he's used for a long time and he's been on others that do not work for him. The doctors do not want to fill out all the forms because it is cumbersome. I don't blame them, but my son needs that medicine and I really had to keep on them to do it. At one point, I too was told I needed to try other medications for my son and have them be ineffective in order for him to get the one he needs. But, then the paperwork got put through again and one day after I bought the first new med, he was approved to get the one he needs. This was right after I finally spoke face to face with the one competent, caring nurse at my son's allergist. After that nurse took charge of the paperwork, my son was suddenly approved.

 

Also, my husband tried to get some medicine that he's had prescribed in the past at the end of last year. The doctor said they filed the paperwork, but that the insurance company still turned the med down. That doctor is very conscientious, so we thought there was no point in pursuing. The next week, we got a notice from the insurance company stating the med was denied because the doctor hadn't supplied them with the info they had requested. My guess is that the insurance company is full of it and just playing games, but we are getting the doctor to fill out the paperwork again. Persistence seems to be key.

[G5052]

Yes. Are you sure the doctor has done everything she needs to do to advocate for you? If you are not thrilled with this doctor, try another. Last year, we had denials for my son's allergy spray. It's something that he's used for a long time and he's been on others that do not work for him. The doctors do not want to fill out all the forms because it is cumbersome. I don't blame them, but my son needs that medicine and I really had to keep on them to do it. At one point, I too was told I needed to try other medications for my son and have them be ineffective in order for him to get the one he needs. But, then the paperwork got put through again and one day after I bought the first new med, he was approved to get the one he needs. This was right after I finally spoke face to face with the one competent, caring nurse at my son's allergist. After that nurse took charge of the paperwork, my son was suddenly approved.

 

Also, my husband tried to get some medicine that he's had prescribed in the past at the end of last year. The doctor said they filed the paperwork, but that the insurance company still turned the med down. That doctor is very conscientious, so we thought there was no point in pursuing. The next week, we got a notice from the insurance company stating the med was denied because the doctor hadn't supplied them with the info they had requested. My guess is that the insurance company is full of it and just playing games, but we are getting the doctor to fill out the paperwork again. Persistence seems to be key.

 

Over and over. We had a surgery to implant a $35,000 device that insurance wouldn't give pre-approval for. We know this surgeon very well, and they've always gone to the end for us to get things paid. I asked his PA to have him call just to confirm that he wouldn't let this go, and he assured me that we wouldn't be billed by the hospital or his office until they had truly exhausted every avenue to get it paid for.

 

Initially insurance denied it. I just sent his office a copy of the denial, and then a month later it was resolved with little effort on my part.

 

There are some "good guys" out there.

[Harriet Vane]

I'm so sorry.

 

Try another doctor? Because honestly, this doesn't sound like a nurse-practitioner situation?

 

:grouphug:

[Alessandra]

This reminds me of the situation of a friend who wears an artificial leg. The insurance company had some rule that limited how many in a certain period. I don't remember all the details, but my friend had to fight for a working LEG. Thank goodness, she is a real fighter!

[Tammyla]

:crying: The whole procedure is just wrong.  Poor kid... :crying:

[Monica_in_Switzerland]

I am heartsick for you.  My niece is low functioning ASD.  If my brother was going through what you are going through, he'd probably fly into a homicidal rage.  And I wouldn't blame him...  I hope this gets sorted out in less than the 6ish months they are asking you to basically sacrifice to meltdowns and tantrums.  I mean, surely you didn't have anything useful or fun planned for that half year, right?  Sigh.

[happi duck]

The system is barbaric...not just broken, not just inefficient...barbaric.

 

(Hugs)

[Forget-Me-Not]

DH went into the appt with the paperwork expecting to go that route. The doctor recommended doing it this way. Relying on the manufacturer's good graces, hoping we get accepted for help, and having to reapply yearly (if the program continues) is a gamble. And having to go through these med changes after he's gone through puberty and is much bigger than me is a less desirable possibility than the horrible one we are facing now. Basically, she made it sound like it was now or when he's bigger.

 

This sounds like she didn't want to be bothered with the paperwork involved.  I would really insist that she submit something to the insurance company detailing the medications (including the generic) that have been tried and failed already.  Be a squeaky wheel at the docs and at the insurance company.  I'm so so sorry.   What a nightmare. 

[Guest]

You said he can only shorten the time on the meds if there is an adverse reaction. Can you claim vomiting and diarrhea after a day on each one?

 

Sorry, this just sucks!!

[Kathryn]

Yeah, I'm not happy with the doctor. I feel like she could have at least tried. I only met her once and didn't care for her. I'm frankly glad that she's leaving. I don't think I'd get anywhere with asking her for help. I'm going to try talking to his regular ped tomorrow.

[Kathryn]

Minor update: I've been sick and unable to deal with this until this morning. I talked with the pharmacy and the cash price is $374/mo. I had talked with my mom, who happens to have a friend with money. When she told her friend about the situation, her friend offered to pay for a month while we try to get things straightened out. But his prescription ran out. I hadn't heard anything on cardiology, so called his regular ped. They had no clue what I was talking about, hadn't heard anything from the dev. Ped. I explained the situation and the fact that we'd now wasted five days being no closer to a resolution and depleting his supply. The nurse there was very helpful and immediately went to his regular pediatrician and she has called in a prescription for two months of Intuniv. My mom's friend transferred money to her bank account and she has transferred to mine. So, we now are not on such a tight schedule with dealing with this, but it's still daunting.

[JFSinIL]

Blessings on that friend of your mom for helping out.

[Kathryn]

Does anyone know, I assume I can pay with my HSA even though insurance won't cover it?

[zoobie]

You should be able to--also, have you tried the program Tap was talking about that finds the cheapest place for the prescription without insurance? Costs vary widely from pharmacy to pharmacy. 

 

ETA a quote from Tap in another thread. I didn't get the box to work correctly:

Use Goodrx app to find a pharmacy that has a decent price on the meds.  Goodrx is a discount card and it bypasses your insurance.  It is not 100% accurate, but fairly close. Right now it says fluoxetine 10 capsules x90=under $10. If you doctor will let you get a 3month supply and writes the script that way, then you can drop that price per month even lower.  #270 (10mgx3x3months) is $15 at many pharmacies. Let them know when you are dropping off the script that you want to use Goodrx. You have to register and the app will give you an ID#.  You have to show that information when you drop off the prescription for them to give you that pricing. Let them know you want to verify the price before you fill the scipt to make sure it is at least in the expected Goodrx ball park.  I have only seen it be really wrong one time, and it was a medication that there was a national shortage of at the moment, so we had to order in a more expensive brand that usual. It is typically accurate within a dollar or two. 

Edited February 5, 2016 by zoobie

[Kathryn]

You should be able to--also, have you tried the program Tap was talking about that finds the cheapest place for the prescription without insurance? Costs vary widely from pharmacy to pharmacy.

 

ETA a quote from Tap in another thread. I didn't get the box to work correctly:

Use Goodrx app to find a pharmacy that has a decent price on the meds. Goodrx is a discount card and it bypasses your insurance. It is not 100% accurate, but fairly close. Right now it says fluoxetine 10 capsules x90=under $10. If you doctor will let you get a 3month supply and writes the script that way, then you can drop that price per month even lower. #270 (10mgx3x3months) is $15 at many pharmacies. Let them know when you are dropping off the script that you want to use Goodrx. You have to register and the app will give you an ID#. You have to show that information when you drop off the prescription for them to give you that pricing. Let them know you want to verify the price before you fill the scipt to make sure it is at least in the expected Goodrx ball park. I have only seen it be really wrong one time, and it was a medication that there was a national shortage of at the moment, so we had to order in a more expensive brand that usual. It is typically accurate within a dollar or two.

I looked at it the day she posted it and it wouldn't let me select the brand. But, I just did it again and it says $305. I'll try to figure out how this works. It says to have this when you bring in the prescription, but the doctor called it in. Edited February 5, 2016 by Kathryn

[OnMyOwn]

Does anyone know, I assume I can pay with my HSA even though insurance won't cover it?

 

I can't see why not.  I would.

[Tammyla]

Hoping you already have the script filled, but if not...

 

Be sure to have the doctor write the script and that you get a copy.  Our HSA will pay, but often insists on a doctor script.  (Example here was Claritin (and the shingles vac); we went to simply purchasing Claritin over the counter, not at the pharmacy...However HSA wants the dr. script.)

Does anyone know, I assume I can pay with my HSA even though insurance won't cover it?