Crippled by cost of copays:(

[BeccaGrace]

My husband and youngest daughter both take anti-seizure medications and thankfully have good seizure control on their current meds. Both their neurologists do not allow generic anti-seizure meds because the variations allowed in dosage strength can vary among brands of generics and even from batch to batch -- while this may not have much impact on an antibiotic or a pain medication, any small variation in strength could be enough to trigger a seizure. It's been such a long road for them both to have seizure control, I don't know what I would do if we had to switch and they lost it -- especially my husband since he wouldn't be able to work.
Since there are generics available and we use the namebrand, our insurance requires that we pay the copay plus half the cost of the medication. This has always resulted in pretty expensive copays and in the past year I took a second job to basically pay for the medication (Becca's were about $600 for a 3 month supply and Joey's were about $1000). It was a lot but we were making it work.
Yesterday I called to put in a refill and we found out the price of one of the medications (Keppra) increased a crazy amount just since the end of last year Now Becca's will be $1000 for three months and Joey's will be $1600! Even the rep from the insurance company sounded horrified!
We've looked into different resources for assistance but they either require that you don't have insurance or that you make less than $40K for a married couple to qualify.
I think the thing that is most frustrating is that we are middle class, both work more than 50 hours a week and have really good insurance and we still can't afford our medications, which now account for about 15% of our combined income. The insurance rep suggested we appeal with letters of support from the doctors, so we are going to try even though I've heard the success rate is limited. Does anyone know someone that has been successful in appealing in a situation like this? I think it would make me feel better if I knew that someone has succeeded at this as it's our last ditch effort before the next refill
We are supposed to be going to Disney in November but right now that trip is looking pretty hopeless...I just needed to vent a little and see if anyone else is in the same situation. I know things could be much worse and I'm just thankful for their health despite the expense but I can't help but being frustrated that there is nothing to fight these rising costs.
Thanks if you made it through my rant

 

[GAGirlInVA]

I have a friend that has gotten approval with having her doc write a strongly worded letter of her son's behalf.

It's worth a try.

(((HUGS)))

 

[rchristiansen]

I'm pretty sure our state allows all kids regardless of family income to be covered under the CHIP program.

I also know that with the new health care law in effect, kids can not be denied coverage under new health insurance plans.

Perhaps you could look into a new plan on somewhere like ehealthinsurance.com?

We have lousy insurance, but a really low premium, so budgeting is sort of crazy any time we go to the doctor. However, I do know that there are deductibles that can be met for our prescription coverage and other services --- so we do know what the maximum amount we'd ever pay in a year would be.

Good luck!

 

[mrsxsparrow]

Have you checked the websites of your medications? They usually have some form of coupon. I take a medication that does come in a generic, but not in the dosage I use, so the copay is pretty expensive. I went to the website and signed up for their "loyalty program," and now my co-pay is free. I don't think its usually that much, but any little bit helps, right? Worth a try.

 

[RNMOM]

Many drug manufacturers will help with the cost of meds if you apply. Often the doctor's office can help. Write to the manufacturer and ask if they have a program.

 

[DisnyMama]

Have you tried calling Costco's pharmacy an ask them what they would charge you for the medication? Even with insurance quite often I have found that they are cheaper. For instance I take Topiramate, the generic of Topamax for migraine prevention. Have been for years. Thank goodness they finally came out with the generic which at Costco only costs me about $20 and thats with no insurance. A few years ago when only Topamax was available it was well over $350 a month but Costco only charged me around $180. I think they told me that they sell it to the customer at their cost or very close.....if you have insurance it will be less of course and you do not have to have a Costco membership to buy prescriptions at their pharmacies. You just tell the person at the door you are getting a prescription at the pharmacy and they will let you in..no problem.

I wish you all the best as I do believe it is totally unnecessary for the drug companies to charge what they do for meds that are so needed.

Take care,
Shannon

 

[LoveMyBoys]

Your doc needs to write a letter of necessity letter to the insurance company explaining why you need the brand name. Sometimes they need to write more than once or twice but eventually the insurance company would usually approve it. My MIL works at a doctor's office, and she writes these kinds of letters often. I had this conversation with her a number of times, and she says that most doctors are not eager to write these letters because the process of dealing with the insurance company is very time consuming and the doctors office doesn't get paid anything for it. I know a lot of patients who are very grateful to her because she puts in a lot of her own time doing things like this. You have to be persistent with your doctor insisting that his office write the letters.

Good luck

 

[pantherlj]

Is your insurance through work or do you have an individual/family policy?

Either way .... do you have an option to switch to a high deductible plan with an HSA? These plans don't have copays - you have to pay the full cost for everything until you meet your deductible. Then you pay a set % until your maximum is met. The insurance company covers 100% the rest of the year after you meet your maximum out of pocket. And, the monthly premiums are generally lower.

The only thing that might not work with that is the brand name when generic is available. Not sure how that would be covered after you met your max for the year since a generic is available.

Something to consider and research if you have the option to change.

 

[LoveBWVVBR]

Is your insurance through work or do you have an individual/family policy?

Either way .... do you have an option to switch to a high deductible plan with an HSA? These plans don't have copays - you have to pay the full cost for everything until you meet your deductible. Then you pay a set % until your maximum is met. The insurance company covers 100% the rest of the year after you meet your maximum out of pocket. And, the monthly premiums are generally lower.

The only thing that might not work with that is the brand name when generic is available. Not sure how that would be covered after you met your max for the year since a generic is available.

Something to consider and research if you have the option to change.

My advice would be not to switch to this setup if you can avoid it. We've had this through DH's employer for over a year now, and it's a financial nightmare. That 5K OOP is only on things that the insurance company counts. If it isn't something that they cover, it's not counted towards the deductable no matter how much you're spending on it. In the OP's case, the brand-name drug may no longer be on the insurance company's formulary because only the generic is being covered. It's entirely possible that she'd be out $2600/month with no end in sight and that not one cent of that would be applied towards her deductable or towards the "maximum out-of-pocket" cost. Even if she were able to get the cost of both meds. credited towards the deductable, our deductable is 5K/person, 10K/family, so she'd be out a minimum of 10K before both meds. would be covered.

I tallied it up yesterday, and we're spending close to 20K/YEAR OOP right now between medications, Dr. visits, and DD's PT/OT/ST. Last year, we met a whopping 1K of the deductable. The monthly statements tell me that I spent only that 1K OOP last year. Riiiight. I must have imagined the other 19K or so.

Other than one child having asthma and DH having allergies, we're healthy. I shudder to think about what we will owe if anyone breaks a bone, needs an expensive test, or ends up in the hospital. It sounds good to say that we'd only be OOP 5K or 10K, but that's only on things covered by the insurance. If the hospital dispenses a med. not on our plan, we're out 100% of the medication cost even with the deductable met because they don't cover it. If a doctor doesn't take Blue Cross, we'd be out their fees as well. Take my word for it...this kind of insurance will bleed you dry.

OP - I agree with the advice to ask the doctor to write appeal letters, possibly repeatedly. We had luck getting Prevacid solutabs covered for our youngest a couple of years ago. We had a PPO plan back then, and it took 2 letters from our Dr.'s office to get it covered I think. It was then covered for 12 months.

 

[QueenGoblin]

We successfully appealed a decision with our insurance company (it wasn't about medication, they didn't want to pay for DD to have some abscessed teeth taken care of in a hospital setting). We could make two appeals. They denied our first appeal which had our letter and a letter from the dentist who recommended the procedure. We asked for a copy of all the policies used by the insurance company to make these kinds of decisions and which you should be entitled to. Looking over them was very useful in writing our second appeal. In our second appeal we added a letter from one of the people who works with my daughter through the local school district documenting that she has behavior delays that make her more anxious and harder to communicate with than other children her age. Since she was close to the cut off age in the policy and they stated they made allowances for developmental delays, they accepted our second appeal.

So yes, ask for the policies, go over them with a fine tooth comb and then enlist as many professionals as are appropriate to write letters of support.

 

[Brer Shay]

I was the benefit adminstrator for my previous company for four years and worked with several employees on this point (getting brand name). If your physician is behind you in wrting the letters and the drug is not being used in an off label application, it will likely get approved, but it will take time. Don't give up!! I know insurance companies count on just wearing some people out.

 

[rchristiansen]

I know insurance companies count on just wearing some people out.

That is VERY true. It took us MONTHS to get approval just for the POLICY! And we don't have any major health problems - but the one insurance company was stupid and thought that something I put down for my DD was actually something else and just denied it on the spot. Then I was the one who had to prove is WAS not that, but something minor.

Another company denied the application because I had a preventative appointment scheduled --- they made us WAIT until the appointment was done and proved I didn't have any major illness - with full medical records from my doctor (costly) faxed in.

But they don't tell you any of this stuff - they just deny you --- and then you cry. And then fight --- makes me mad.

Yes, Yes, they are stupid.

 

[tori_bell]

I am a pharmacist and, unfortunately, I see this all too often. In addition to the advice above, I would like to add one thing that I have seen make a difference for my patients in the past. In my state, the doctor can indicate on a prescription that the patient must get a brand name medicine by putting (in his own handwriting) "Dispense as Written- Brand Name Medically Necessary" This changes how I submit the claim to the insurance company. On occasion I have seen a difference in the copay when submitted this way versus when submitted as a patient request for brand name only. Sometimes doctors do not know about this option, so they tell the patient to get the brand name medicine but do not fill out the prescription correctly. Just something you may want to check into....

 

[AmandaNied]

Have you gone to the websites for thd drug company? You would be suprised at the generous assistance programs they have- many people don't think they would qualify- but in fact do. It would be worth a shot!!

 

[disneywithfive]

I didn't think there was a generic Keppra. My daughter takes 4 anti-seizure meds and this is one that there isn't a generic version of. We were initially given a card from the manufacturer of the XR version to help with cost but didn't qualify since my daughter is under the recommended age for the extended release. But check with the manufacturer and see if they can help. I understand your situation. Our daughters drugs co pays are about $250 per month and that's with the majority being generic. She's got a rare and extreme form of epilepsy and we don't have much control - brand or generic.

 

[solotraveler]

Have you gone to the websites for thd drug company? You would be suprised at the generous assistance programs they have- many people don't think they would qualify- but in fact do. It would be worth a shot!!

I absolutely agree with this. A good first step would be to contact the manufacturer of the drug to see what might be available. A lot of times these programs have to income requirements at all and the time you and the physician would put in to get the assistance relatively small. It certainly can't hurt to try.

The situation with the insurance company may be tough, especially since there are available generics and it sounds like you have at least some coverage for the brand name drug. The insurance company may require that a patient try and fail on the generic before approving the brand.... but since you have coverage for the brand drug already you are likely contracted into your coverage for that medication. It's a tough, tough spot for sure.

One other option I have seen work in the past, if the insurance is employer-sponsored, is to have your husband (I'm assuming from your post the insurance is through his work) talk to his HR department about the situation. While this can open up a whole can of worms and would require a lot of consideration on your part, I have seen it in rare occasions where employers will raise coverage amounts to help out employees... but this would be an absolute last resort... and maybe not even then.

Best of luck to you all!

 

[princesscharming]

One more thing... have you soncidered getting health insurance from both of your employers? You can have secondary insurance. I don't know the cost/benefit analysis for you. But if migt be worth crunching some numbers to see if you'd save more than you'd spend on the secondary insurance.

 

[loweschickie]

Have you gone to the websites for thd drug company? You would be suprised at the generous assistance programs they have- many people don't think they would qualify- but in fact do. It would be worth a shot!!

Ditto! I was just going to post the same thing. You can even try googling the name of the meds and see what coupons are available. Some are pay no more than $XX..........others take set amounts off your copay. Good luck!

 

[kaytieeldr]

Somebody questioned above whether the prescribed medication at issue is actually even available. It is; it's called Levetiracetam.

When I wanted to switch from Topamax ($80 copay) to toporimate ($10 copay), I first talked to - not my doctor, but my pharmacist. He explained that the generic version of a drug had to have at least 80% of the active ingredient of the name brand, and that yes, the inactive ingredients/fillers could be different; armed with this information, my doctor agreed to switch me to a higher dosage of the less expensive drug. And I still haven't had a seizure.

I'm NOT saying the OP should have her family change to different drugs!!!!!! But stop by your drugstore when you think it'll be slow and talk to your pharmacist!

 

[mickeymom1]

I see that you are in NJ. There is a program called the Catastrophic illness in children relief fund to help families get reimbursed for large medical bills. I have never applied, but I know of other local families that have had overwhelming medical bills and have received this assistance. Unfortunately you need to put the money out to pay for the bills, then you submit the receipts for the year and get reimbursed (And if memory serves me correct it isn't just "medical receipts" but can also include gas to go to and from doctor appointments and such. Anything that has to do with providing care.). Sorry I don't know the specifics, but it might be something that you may qualify for! Here is the website that I found about it: http://www.state.nj.us/humanservices/cicrf/home/

As a pharmacist and a mom of a disabled child I feel your pain and understand your frustration! There is a lot of great advice on this thread and I hope that something works out for you and your family

Best wishes!