Why our American Medical System is broken.

22 Aug

Maura takes Trileptal for her seizures.  It works well.  Everyone has been happy with it.

Maura tried the generic a few years ago.  And by “tried it”, I mean we submitted our prescription for Trileptal to the Medco Overlords (Medco is a mail order prescription company that we were required to use for any ongoing prescriptions) and received a box of generic stuff instead.

So we tried it.

Because we had no choice.

It caused her to be moody.  Really moody.  To the point that her teachers offered to write letters attesting to how moody it made her.  My normally happy-go-lucky girl was pitching fits and screaming over everything.  She wasn’t easy to live with.

We got Medco to allow us to go back to Trileptal, after our doctor wrote a note stating Maura needed to be on the Trileptal.  They charged us the cost difference of the generic, something like $25-30 at the time.  The Trileptal full price, back in 2010, was something like $120 or so.

When we moved to Ireland, we had to pay out of pocket for it for a couple months.  It cost us 80 euro ($106 by today’s exchange rate).  I remember being surprised that it was cheaper in Ireland.  But then we were able to get Maura on one of the social welfare programs that covers prescriptions, the Long Term Illness benefit, and didn’t have to pay a dime.  It was awesome.

(Note – Ireland has a program that if ANY family pays more than like 135 euro per month in prescriptions, you can be reimbursed any amount after that.  So no family will ever pay more than 135 euros a month in prescriptions.)

Now we’re back in the States, noted world-wide for its awesome health care providers, innovative techniques, abilities to cure diseases other countries are still struggling with.  I went to the pediatrician with Maura, explained our dependence on Trileptal and our need for a neurologist.    She started the referral process for a neurologist and gave us a 2 month prescription for Trileptal to tide us over.

I went to fill that prescription today, with my handy dandy insurance card, the one that swore it covered 100% of preventive drugs.  I left the prescription with the nice woman who assured me a new bottle would be waiting for us the next afternoon, which was great because with all my school flurries, I had put this off to the last minute.  I only have a couple days worth left.

And then the pharmacy called.

The nice woman told me that the way the doctor wrote it, she can’t do a 30 day supply because that’s not how it’s dispensed.  The bottle would only have 20.8 days worth in each.  If I wanted, she could do a 40 day supply, or two bottles.  That was good, great, thanks.

She said “Okay then, I will fill that prescription for Trileptal generic oral suspension.  The copay will be $60.”

I said great, hung up…and went…


Did she say generic?

I called back.  Got another nice woman,  Explained what I thought I heard and was told that yes, they were ordering the generic.  Why, did I want the name brand?

Yes please.

Okay, name brand ordered and will be ready for the next day.


Except now the whole “copay” thing was beginning to make me scratch my head.  I didn’t think we’d have copays for this.  I pull out the handy folder, easy explanation guide.

“Preventive drugs are covered at 100%.”

What the heck?

Okay, it’s new insurance, maybe I’m missing something….

And my phone rings…

It’s the pharmacy….

The nice lady calls to state that since I want the name brand, she can only disperse one bottle of that at a time, so I can only get the 20.8 day supply.


Fine.  Whatever.  Maura needs this.

Then she tells me that the copay will be $220.



For something I can get for half the cost in Ireland.

I said “WHAT? $220!  For the copay?  How much is it full price?”



“I don’t know ma’am.  But the copay is so high because they penalize you for choosing the name brand instead of the generic.” (I am paraphrasing…except for the “penalize” part.  She used that word.)

Yes, because I want the drug that I know works on my daughter well without side effects, the medication she’s been using faithfully for half her life, I must be penalized.  And pay twice as much for a COPAY as I would to buy it full price in Ireland.

I looked at my benefits book.  “But I shouldn’t even be paying a copay on the generic!  WTH?”

The poor woman explained that that’s how they were billed when they put our info into the insurance system.  She offered to hold off while I worked things out, but Maura NEEDS the medicine.  We can’t just skip a few days.  I calmed down enough to stop shouting “TWO HUNDRED AND TWENTY DOLLARS!” into the woman’s ear, enough to let her know I wasn’t angry with her and got off the phone.

I did go off on Facebook.  Where a friend told me to call Costco, that they often had better prices.

So I call Costco.

Who said out of pocket, the Trileptal would be $240. He couldn’t give me an estimate with insurance without trying to bill them, and I mentioned the $220 copay.

He said “For a COPAY?”

Yes, I’m not the only one surprised by this.


For a copay.

For a twenty day supply of meds.

That’s $11 a dose.

For medication that’s often prescribed to people with seizure disorders.


I looked over the bit of paperwork we do have for the insurance (because all benefits can be explained in detail online, except I’m not able to look that up as I haven’t been formally allowed on the account)….and I read this –

“See complete Preventive Drug List in the Resources section of this guide.”

Okay.  Turn to the list.

Guess what’s NOT a Preventive Drug listed?

Seizure medications.

ANY of them.

I can get drugs to prevent conception.  I can get drugs to prevent hypertension.  I can get drugs to prevent nausea and dizziness.  I can get drugs to prevent gout.


I can even get colonoscopy preps.

But drugs to prevent seizures aren’t consider preventive.

Four different classes of drugs to treat hypertension?  Sure.  Come and get them.

Seizures?  HA!

Thank God they cover ulcer  medications, because I’m about to develop one.

There is something really wrong with our health care system when a medication can more than double in price in 2 1/2 years, yet remain lower than before in a less affluent European country.  Ireland may not have had the best health care, but at least I could afford it.  And when it was deemed “too much”, the government was actually helpful.  Health care wasn’t seen as a way to get rich.



24 Responses to “Why our American Medical System is broken.”

  1. Melissa August 22, 2013 at 2:06 am #

    I live in Italy and always bring asthma inhaler’s to my Mom back in America. I pay a little more than a euro for each one, not generic, and she pays $80 for generic! Unbelievable!

  2. politicaljules August 22, 2013 at 3:02 am #

    It has to do with Big Pharma, and their fleecing of the American people. Drug companies are given a pass when it comes to regulation of prices, and our government lets them charge exorbitant prices without any oversight whatsoever.

    My daughter’s cystic fibrosis drugs are insanely expensive, and just one of her drugs costs $8000 a month. Another costs $7000, and her cheapest drug costs $2000 a month.

    Now did you know there is a cure for Cf? It is a remarkable finding that corrects the genetic defect, and you do not have to worry about dying a slow death because this miracle drug has been discovered!! However, you want to know what the billion dollar drug industry is charging for it? $300,000 a year.

    Most people’s insurance wont cover that. So you turn to government subsidized insurance to cover it, but not so fast. Now countries like Ireland, etc are having to subsidize the cost and many governments are finding they cannot pay $300,000 per patient per year without going broke.

    In fact, Australia just said ‘no’ to the drug, and thousands of Cf patients are out of luck. Did the drug maker say, ‘we care, and we will lower the cost.’ Heck no. Give us our $300k or we let your people die.

    Big Pharma is in control in America, and even obamacare refuses to reign them in. Because they contribute to political campaigns, so they can make billions. But what can we do?

  3. Jan August 22, 2013 at 5:56 am #

    I have dealt with Medco and you are probably paying a deductible and a copay. I have to do that with my Restasis. The first order is 300.00 and after that it is 200.00. I have actually dropped them and went on my husband’s policy (instead of my work policy) His insurance is better, I don’t HAVE to do mail order and it will be about 100.00 every time. Welcome to Obama Care. Someone has to pay for all the people that get it free.

  4. Stephanie August 22, 2013 at 6:05 am #

    Yes, the pharmaceutical companies are out of control and Obamacare is not helping. I’m sorry you had to go through this. I don’t know if Seattle has something like this, but in MA, I was just able to get my son secondary medical insurance through the state because of his chromosomal abnormality. He’s 5 and developmentally delayed among other things. We have Tufts as a primary but the secondary insurance pays for the copays and prescriptions. Worth looking into- maybe Maura could get something like that. Btw, I love your blog. Can totally relate as a mom of 5… And it’s nice to hear about other people just trying to do the right thing for their special needs child and make it through a store without a screaming fit. Thanks for what you do and I hope things start to get easier for you!

  5. specialneedsrealitytv August 22, 2013 at 6:23 am #

    Is Maura eligible for Medicaid for children with disabilities? In PA, I get it as secondary insurance and it covers what primary doesn’t. I know how scary it is to not have seizures meds and how can they say it’s not preventive?

  6. Renee Anne August 22, 2013 at 9:03 am #

    I don’t even want to know what Little Man’s special powder for his milk costs….I know when we lived back in Wisconsin, the university provided it for us because only 5 kids in the entire state had a fatty acid oxidation disorder and it was easier for the university to provide it than to fight with insurance companies about it. I do knot that one of the powders cost $150/can (and we were going through at least 5 cans/month). The other one was something like $90/box (of which we went through 1/month at the time). ::sigh:: Damn health care system.

  7. Sandra August 22, 2013 at 9:10 am #

    Yes, the system is very broken.

    Just a bit of advice: Try the Android app GoodRx. It is completely free and you may be able to find medication at a local pharmacy for cheaper than your copay.
    My medication was over $200 a month regular price at Target. My copay was $45. I used a coupon off GoodRx and it brought it down to $26 and some change. Super easy and simple to search. All you have to do is search and then see what the cost is and if a coupon is available. If there is a coupon, just pull it up on the app and give it to the pharmacist. The price is good for quite a while. I hope you are able to find one for her medication

    • phoebz4 August 22, 2013 at 11:34 am #

      I looked it up, it would actually cost me more! Gotta love that lol.

  8. Betsy August 22, 2013 at 9:28 am #

    HI- I have been following your journey back to the states. I am also a Steubenville grad. I am not sure how I came upon your blog but I am enjoying your writing and your story. My sister has a daughter with Aicardi Syndrome. Seizures come with it. She swears by Mark’s Marine Pharmacy in Canada for the price and convenience. They are very nice. I gave it a quick look and they are significantly lower than the amount you quoted. Their direct link is but I realize I am a stranger so you can google them and get your own link.

  9. saracvt August 22, 2013 at 9:46 am #

    We had a similar situation with Olivia and a drug her doctor wanted her on but Medco wouldn’t cover because it had not been approved in kids under five. Olivia was four and a half at the time. The doctor, a pediatric neurologist, wrote a letter to Medco saying that if they DIDN’T cover it, and anything happened to Olivia, he would testify against them at the trial. Insurance companies are insanely terrified of getting sued. You may have to suck it up and pay it the first month if you can. But once you get a neurologist, have him/her fight Medco for her and tell them that Maura really needs name-brand and why. I’m betting they’ll back down fast.

  10. Darcy Pennington Arnold August 22, 2013 at 10:52 am #

    Phoebe, call your insurance company direct; do not put up with the first rep you get. Demand a manager. We have fought and argued with these people in the past and won. They MUST have a review board. It’s a pain in the tush, I know, but that’s the way it works with these Arses! Good luck to you & Maura.

  11. Sharon Hoover Weidemann August 22, 2013 at 5:41 pm #

    Hahahah! My daughter just sat in a hospital for 35 days while I fought with insurance to get her placed in a hospital that could address her behaviors and complicated health issues. She lives on IV fluids. Now, insurance (last I heard) was refusing to pay for that stay bc she was at a medical hospital bc of psych issues (I could no longer keep IV line safe bc she was trying to rip it out) so the doctors mandated her inpatient but there is not one psych hospital in our state that can handle her medical needs. Long story short, if I had not spent at least a half hour a day calling insurance and harassing like a psych mom , bringing in a lawyer, and state representatives office as well as a local govt official, my daughter would still be sitting at Hershey with our insurance hoping we would just give up and take her home.

    She will be inpatient two to three months….away from our home four months bc of the delay. We spent easily $1000 on gas last month going to visit her everyday so she knew we haven’t abandoned her and it will cost us at least $200 a visit to travel to see her with
    our kids…

    Believe me, I’m with you…

  12. Rachael T August 22, 2013 at 7:19 pm #

    We had to get a name-brand for my son once. Yes, only once. I’m really a novice at this. Anyway the specialist said he HAD to have the name brand, do NOT get the generic. Generic was $15. Name brand was $205. For a very small vial of cream. Luckily he only needed a couple of applications, but still. It was a huge difference! Good luck!

  13. Joy M. Newcom August 22, 2013 at 10:49 pm #

    I hope Maura is on Medicaid or at least able to get on it. That should help pick up what private pay does not. Perhaps you have already done so, but be sure to contact the county social services office in the county you now live and walk them through your last few years. They know of programs that are new as well as tried and true. There should be someone there to help you as you navigate the system. All the best to you.

    • Joy M. Newcom August 22, 2013 at 10:51 pm #

      Oh! and also: Medical letters of exception from physicians (explaining the need for brand over generic) can work magic too. You likely already know this as well. Just thought I’d err on the mention.

      • phoebz4 August 23, 2013 at 12:01 am #

        we have tried that in the past with this company – we still had to pay the difference.

    • phoebz4 August 23, 2013 at 12:00 am #

      I’m not going to hold my breath on Medicaid. We probably make “too much”, gathering what a friend has told me. I’ll still give it a shot, but because Maura doesn’t always qualify as “disabled enough”, it can get difficult. It’s hard to prove she’s disabled without a handy dandy label. They like labels.

      • Joy M. Newcom August 23, 2013 at 1:36 pm #

        You are right about the label. Unfortunately, the “big” (relative term) money help is with the ID Waiver. We held off as long as possible from our son getting that label (didn’t want teachers using it against him in elementary so waited until just before middle school). But once he passed/failed (a matter of perspective, isn’t it?) the intellectual benchmark, life did get “easier” under Medicaid/Title XIX.

        I wish you steady footsteps on your path forward. You’re great at it already.

  14. Rachel August 23, 2013 at 8:04 am #

    I don’t have an easy answer for your problems, but sending you love and light that it may be easier…;)

  15. marie clare August 23, 2013 at 2:35 pm #

    the US medical system is very broken, and unfortunately Americans dont even realise how bad it is as they havent had the experience of living in another country.

  16. Melissa Lawler August 23, 2013 at 6:49 pm #

    Welcome back to the US. I don’t take the majority of my medications for this same reason. But, I am in love with my pharmacist at Target. He put a BUNCH of discounts to take my $100.00 a month medication down to $18.00 because without those discounts, I can’t have it. No insurance, no job, not eligible for medicaid.

  17. Conoad August 23, 2013 at 10:26 pm #

    Wow. I could’ve written that post. Same med, same Medco. My husband can’t take generic Trileptal either but his dose is $500 for brand name. Yikes! Appeal after appeal…nightmare of a healthcare system. A medication that gives quality of life, allows him to work and drive…yet we can barely afford it. Something is seriously wrong here. Best wishes!

  18. mixedupmommy September 10, 2013 at 7:59 pm #

    So true! I blogged about this and my son’s vigabatrin (Sabril). Before it was FDA approved people bought it from Canada for a few hundred dollars a month out of pocket. When I checked our insurance statement, I saw that now that it can be dispensed here, they charge $7,000 a month!


  1. Remember when I gloated that we were done with vigabatrin? Oops. | Mixed Up Mommy - September 10, 2013

    […] Why our American Medical System is broken. ( […]

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