Prescription question

Discussion in 'The Watercooler' started by slsh, Feb 26, 2014.

  1. slsh

    slsh member since 1999

    Can someone explain to me how a company/insurer can mandate that only generic cost be covered, even if a physician prescribes brand name only? husband's company is changing benefits come April 1 so that if we insist on brand name medications, we are responsible for the difference in cost between the generic and brand name, plus the copay. Doesn't matter if MD prescribes brand name or not - they will only pay nongeneric cost. This in essence will make us uninsured as far as Boo's medications are concerned. Our out of pocket cost will be $20,000 per year. Not something we can afford by any stretch of the imagination.

    What gets me is that generics are *not* identical to brand name. It took years to get his epilepsy under control. He's on 3 medications right now, plus the prn one we use when he does seize (I didn't even check the cost difference on that one). And yet I've got bureaucrats/accountants telling me that in order to keep from going bankrupt, we must give him generics. They don't care about seizure control. They sure as heck don't care if he starts having breakthroughs or the expense of that (last seizure cost over $10,000, just for 1 night in the hospital). The older he gets, the more anxious I am about seizure control. I'm terrified of SUDEP, and terrified that if he does start having breakthroughs if we do switch to generics, we will never get them under control again.

    How can they get away with dispensing medication *not* as written?
  2. svengandhi

    svengandhi Well-Known Member

    I am having the same issue with Coumadin. The generic doesn't control H's afib as well but the insurance won't pay for the name brand. In your case, maybe you can try appealing to the manufacturer directly for a discount or for compassionate coverage. Is Boo eligible for Katie Beckett relief?
  3. slsh

    slsh member since 1999

    LOL. Sorry - I'm really warped at this stage. This is Illinois, where there is no Katie Beckett waiver. Plus, he's 25 now, so technically is eligible for Medicaid, but IL Medicaid is not paying providers so providers don't accept it. I know Medicaid has a limit on the # of prescriptions they cover, either 3 or 4, which just blows my mind. How can you possibly say you will only cover X number of medications??? Boo is still eligible to be on husband's medical insurance because he won't be 26 until next Jan. What really irks me is they are going to pay, one way or the other - either for the rx or for the hospital bills. But if he does have breakthroughs, it puts him at serious risk of further neurologic damage or, heaven forbid, worse.

    Honestly, I don't understand how on earth insurance companies can refuse to pay for proven effective treatments. Like your husband's Coumadin... again, if they *don't* pay, the cost will ultimately be far higher in the long run. So utterly aggravating!!!!!
  4. Signorina

    Signorina Guest

    Prescription drug coverage isn't mandated and most plans follow a written formulary (list of drugs) which they cover.

    Try a written appeal and definitely contact to the manufacturer. Sometimes manufacturers work with associations-so contact epilepsy support groups. Your insurance company may have a discount by mail option. Contact your state representative too - they can help. And shop online- you may find a better price in Canada
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Sue, get him on disability. Even if IL isnt paying providers (which is something unheard of here) then they will at least give him medicaid. Also, you and I arent getting any younger so he would already be on it when know. Medicaid does cover scripts and yes they do have a cap but a person with a chronic condition is able to go over that cap. Here we are only supposed to get 6 a month with a set number of doctor appts. Oh man I go over that Somehow they group people into this "chronic" grouping and they dont worry about numbers anymore.
  6. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    I am agreeing with Signorina. My two and I went on a new marketplace plan on January 1 with a pretty conservative tiered formulary. One of my medications and one of difficult child's medications were 4th tier and very expensive (not available generic). I went through the preauthorization (that's what they call it with the drug company that administers rxs for Blue Cross) process which was a total pain and tons of time. In the end, difficult children medication went from 279 to 15 a month and mine went from 300 something to 30. It involved the docs getting involved and submitting some paperwork as wells as the patient but it was worth it. My next step was going to be appealing to the manufacturers but, fortunately, that was not necessary.

  7. slsh

    slsh member since 1999

    I did delegate this issue to husband, in terms of dealing with his company. They have an advocacy group and it sounds like they're looking into it. (Yeah husband for stepping up!) His employer is self-insured so... hopefully we'll make some headway.

    I run into this all the time at work, ins. companies (mostly Medicare) refusing to pay for medications. It just boggles my mind that accountants are making medical decisions. It's penny wise, pound foolish in my humble opinion. The cost of 2 seizures will wipe out any "savings" they get by only paying for generics. To say nothing of the trauma to Boo.

    LOL, Janet. You do make me laugh. Not getting younger.... hon, you have no *idea* how old I am these days. Way beyond my years. I know I need to bite the bullet and get him on SSI and then get him on Medicaid. The thought of dealing with the bureaucratic bologna really just makes me ill. Truly. I would love to wait until we get out of this godforsaken state, but that's at least another 15 years, and of course while we are in the process of getting Boo certified as a disabled adult child (oxymoron anyone?) so he can stay on husband's insurance past 26, Murphy does rule our world with a heavy hand so I probably should get on the whole SSI/Medicaid thing sooner than later. UGH.
  8. jal

    jal Member


    Was the preauthorization for a medication that was not originally on their list? My son takes Intuniv and has been for 3 plus years with success for ADHD (he CANNOT tolerate stims). We've always paid a $40 copay. This year with insurance renewal thru work my plan took tier 4 drugs and made us responsible for 50%. Now instead of $40 for a months supply we have to pay $120.

    I've looked into Canadian pharmacies and they are more than what I am paying now. Just trying to locate some kind of waiver thru the company that handles scripts, but all I see is for medication that is currently not on their list.
  9. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    jal, one of the medications was not covered and the other was a 4th tier. Call the insurance company (or their rx company) and find out how to start appeal/authorization process. The nurse in my docs office told me about it.
  10. Lothlorien

    Lothlorien Active Member Staff Member

    What is Kate Beckett relief????

    I would find out if you can get him on insurance through the exchanges or if medicaid will pay for the prescriptions. It might be cheaper to get him his own insurance if they will pay for his medications.

    I feel for you. We come off Cobra today. husband and I have insurance through exchanges now as of tomorrow, but our kids have nothing. They are caught in the backlog of thousands of applications for insurance through the state exchange, because they don't qualify for what husband and I qualify for. In the meantime, I have to foot the bill for Missy's seizure medications, adhd medications and risperdal(plus Mighty's on a nightly medication too), until the approval comes through. Missy does well on the generic for Lamictal, fortunately.
    Last edited: Feb 28, 2014
  11. Lothlorien

    Lothlorien Active Member Staff Member

    Wanted to add....I spoke with the state about getting some assistance with prescriptions until Missy and Mighty are approved for insurance and they directed me here

    There were a couple of others too. I can look into it. I didn't fill the info out yet, but on one of the sites the copay for Proair was $16. versus the $40 I pay now for it with insurance. Several medications were much cheaper buying it through their mail order system than if I got it with the insurance discount now.
  12. slsh

    slsh member since 1999

    Thanks, Loth. It's been an awful week between work and various crises so I haven't had a chance to check out possible options for funding. I will check your link out, as well as check out the manufacturers' links. Hopefully can find something. husband hasn't heard back from his company's advocate yet.

    Katie Beckett is a waiver states could opt in on (of course, IL did not). The waiver is for kids on Medicaid who require extremely high levels of care that can be provided in the home but are typically provided in institutions/hospitals. The real Katie was a vent-dependent kiddo who was on Medicaid, was ready to be discharged home, but Medicaid at the time would only pay for vents in the hospital. Her mom was a true warrior and got President Reagan to change Medicaid rules so that services could be delivered in the home. Boo had the waiver in WA and CA, but then we moved here, LOL. Not applicable to him anyway 'cuz he's such an old man now, but IL has decimated adult waiver funding into nonexistence, so I am doubtful Medicaid would do much for us.

    I'm sorry you're in the same boat, and actually really horrified to hear that the kids are backlogged. That seems to defeat the whole purpose.

    Good idea to check on insuring him individually. Never crossed my mind. I wonder if they would force him to be on SSI, like Medicaid will, before they will consider him. Can't hurt to check it out. Thanks!!

    P. S. - OMG - when did your kids get so *old*????? I about choked when I ready Mighty Mouse is 10 already!!!! LOL.... time flies.
  13. Lothlorien

    Lothlorien Active Member Staff Member

  14. in a daze

    in a daze Well-Known Member

    Hi slsh,
    Why wouldn't you want him to be on SSI? It sounds like he would be eligble if his condition is such that he can't support himself...
  15. mom_to_3

    mom_to_3 Active Member


    For many medications , go to the manufacturers website and look for coupons. Almost all drug manufacturers have them.

  16. susiestar

    susiestar Roll With It

    I am sorry that you are stuck dealing with this idiocy.

    Go through the paperwork to appeal and keep appealing this. Take very careful notes and keep track of them. Who you spoke to, what you were told, etc... You may need these if you end up needing to sue your ins co over this.

    Sadly, I am not sure that medicaid would cover the brand name medication either. I know that here they have to do a lot of extra forms to pay for a brand name and you must repeat the paperwork every so many months. At one point it was every 60 days for 6 mos, then every 90 days for 6 mos, then every six mos after that. It was annoying and not just to me. The doctor had to do paperwork each time I did and the doctor's paperwork was as complicated as they could make it.

    While Boo needs to be on medicaid/disability, be sure to go to the manufacturer's website to read the details of their assistance program. Some companies will not approve you if you are on medicaid/medicare because "the govt will pay". Make sure that medicaid will pay for the brand names before you apply or you could end up with new insurance but medications that still are not covered.
  17. witzend

    witzend Well-Known Member

    I have to assume that you're frustrated and don't expect much more of an answer than "because they can".

    WAY back in the day, our prescriptions were free for generic and $2 for brand. And they went that way until it was at about $15 for generic and $30 for brand about 5 years ago.

    Then they started sending letters. "Do you know that you should take generic?" Yep. Thanks. Whenever I can fill generic, I do fill generic.

    Then about two years ago we started getting a tiered prescriptions system, and we have to fill by mail. 3 months with 3 refills a year, unless it's narcotic, then it's once and you have to have a new rx. Generics were $15, Brands, depending upon what they were were $50, $70, or $90. And all along they're sending letters that say, "I see that you take this particular type of medicine. It's a sleep medicine. It's not the sleep medicine that we think you should take. We think you should take an altogether different kind of sleep medicine that isn't at all chemically similar to the one that you take."

    This summer we started getting "Generic; tiered; tiered + a $500 deductible to be taken $150 at a time; and 'we just won't cover it and there is no generic' so just don't ask." Why? Because they have has sweet deal with a particular pharmaceutical maker and they're not going to buy it if they don't have a deal with them so you can just go shop around for the best you can get or take the other thing that they know is not at all similar to what your doctor prescribed because other people with your symptom seem to be ok with it.

    So, one of husband's medicines that used to be $40 is now $580. He doesn't take it anymore. My sleep medicine is $375, so I get along with something else that puts me to sleep for about 3 hours. We really don't have a choice.
  18. slsh

    slsh member since 1999


    You asked:
    Why wouldn't you want him to be on SSI? It sounds like he would be eligble if his condition is such that he can't support himself...

    No question Boo qualifies. But...

    My brief experience with SSI when thank you first got on it was supremely stupid. He was only on it because of the grant he got through IL that funded Residential Treatment Center (RTC) - we didn't qualify financially, but he was considered to be on his own at age 9 since he was in Residential Treatment Center (RTC). That first year, I had to fill out an expense report. So I did, honestly. 100% of his SSI check was turned over to Residential Treatment Center (RTC). The SSA worker told me I couldn't say that. I had to allocate X% for rent, X% for food, etc. Basically, I was instructed by an SSA worker to lie on the expense report. I got RTCs made representative payee real fast after that.

    So even if Boo got on SSI to assist paying for his medications, I'd still be dealing with idiots at Social Security who would be telling me that I cannot spend 100% of his SSI check on medications. I need to deal with that like I need another difficult child. ;)
  19. SuZir

    SuZir Well-Known Member

    One thing I really don't get, how on earth are your medications so expensive? Generic and brand name alike. I mean, we have very few drugs that are even close to co pays you tell here before the health insurance. Of course there are some expensive ones like biological drugs for certain conditions.

    My kid takes Lexapro, generic though, and I noticed people mentioning it can be an expensive SSRI. His generic medication would cost around 15 bucks a month without the insurance part. Public health insurance pays half of that (and if all medications combined will be over about 900 dollars a year, everything from that point on.) If he would take a brand name, the cost would be around 40 bucks a month minus a little bit (same they pay for generic) from insurance.

    I have noticed it often (though I can't remember the examples right now) that you are talking co-pays much larger than the same drugs are costing around here before the insurance steps in.

    Is it simply that drug companies see your insurance business as an awesome cash cow and take huge margins while they are basically forced to make do with much smaller profits in other markets?

    I do know you use around 15 % of your GDP to health care, when for example we use 7,5 %. Is it just that drug companies see their chance to rip you off, or what makes a difference?
  20. slsh

    slsh member since 1999

    Had to chuckle at this - I asked husband just this afternoon how on earth the brand name companies are going to be able to continue to command the ridiculous $$ for their drugs (when generics are available) when no insurance company will pay it. Eventually, they're going to have to quit charging their exorbitant fees, but I don't think it will be in time for Boo.

    Topamax, for example. Also used for bipolar. Our upcoming "copay" will be over $3300 for a 90-day supply (brand name cost minus generic cost), plus $25. If we go generic, it will only be the $25. But will generics hold the epilepsy in check?

    I understand the reasoning - the original makers of Topamax probably spent a small fortune in development and testing. Plus, let's face it, medications are a big $$ maker. Big profits, which is why there's a waiting period before generics can come out. But... at the same time, there's a greediness. Once the cost of development and testing is recouped, they're still making a fortune on the brand name drugs. Then you have folks like me, who have a kid with severe epilepsy that is life-threatening, who think it's worth the cost not to rock the boat by switching to generics that may or may not be bioidentical. But at the same time, not a chance we can afford to pay the copay. I don't know.... is medical care coming down to the haves and have nots? Do husband and I annihilate any chance of retirement to ensure that we don't run the risk of breakthrough seizures and worse? And what boat does that leave Boo in when we're gone?

    I still don't know what our decision is going to be. Working with neuro and husband's employer.

    Maybe I should've bought stock in the manufacturer of Topamax, way back when, just so we could afford to continue it now.