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Medication Costs And Insurance Coverage

Insurance Medication Costs Xyrem

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#1 merrjake2

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Posted 09 June 2013 - 05:34 PM

I am 24 years old and have been diagnosed with Narcolepsy with Cataplexy for about 8 years.  I just got my first full time teaching job and will be soon transitioning off my parents insurance to my employers insurance plan.  I have been grateful that my parents insurance plan covered all my medication costs and I am afraid that won't be the case with my new insurance plan.  

 

My medication costs are outrageous!  I am on provigil which I believe is about $7,000 for a 90 day supply but the most expensive one I am on is Xyrem.  It is about $6,700 for a 30 day supply which equates to about $223 a day!  I still can't believe how expensive it is!  I can't believe any insurance company can cover these costs.  

 

I am curious if anyone has any experience transferring from their parents insurance plan to an employers private insurance plan.  How did this affect what of your medication costs was covered by your new insurance plan?  Are there other programs out there to help with these excessive costs?  My fear is that I won't be able to be on some of these meds, especially Xyrem because I simply won't be able to afford them!  This is kind of stressful!  

 



#2 brianhess@mindspring.com

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Posted 11 June 2013 - 09:39 AM

I am also interested to hear replies to this question.  My daughter is 16 years old, and is covered on our insurance.  I'm worried about what will happen when she gets her first job and gets her own insurance.  Do insurance companies consider this a pre-existing condition, and are they likely to deny her coverage based on this?



#3 CarlaWilS

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Posted 13 July 2013 - 05:36 PM

Based on my experience, I have had a difficulty time getting coverage. I was diagnosed in March of this year and am on my mother's individual insurance plan (I'm 24 so have also been trying to figure out how I'll negotiate the switch to my own plan). Before my diagnosis I never had much trouble getting anything covered, but now that I'm taking medications for N, none of my prescriptions are covered. My mom and I have applied for two other insurance companies and I was denied for coverage by both (while she was accepted). We met with an insurance broker and he explained that a lot of insurance companies are waiting until the Affordable Care Act rolls out completely to make any big decisions like accepting someone with a pre-existing condition, even when that condition isn't super expensive to cover (ie. Narcolepsy as opposed to cancer). I'm not entirely sure how prescription costs will be affected by AFA, but we won't be denied coverage for anything. Premiums will be higher, but if you're in a lower income bracket (which you may well be because you're younger and probably just starting in your career) you will most likely qualify for government subsidies that will pay most if not all of your copay. 

 

This is how things are supposed to work according to what I've read and what this insurance broker told me and my family. Whether that's how it will actually work remains to be seen.



#4 jennel

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Posted 20 July 2013 - 12:55 PM

I thought that insurance could no longer disqualify someone based on the "pre-existing condition" bs. If not, I'm pretty sure that congress is working on banning that, but I really think it's already been deemed illegal.

 

As far as the Xyrem - outrageous yes, but they have a team to work with your insurance and quite honestly, it is costing me less than other medications are. Also, Provigil does now come in a generic which is significantly less expensive. I was paying $375 for a 90 supply with insurance and when it went generic my co-pay dropped to $20 for twice the amount!

 

Also, I take some dexadrine, which on the insurance is very inexpensive even before the Provigil switched to generic.  I have been getting up to four pills a day and a three month supply was costing me $20. Someone does have to sign for the medicine.

 

My company offers different levels of coverage and I do have to pick the highest, more expensive option but it's worth it. Additionally, I typically spend more than $3,000 out of pocket and that usually still leaves a lot of bills unpaid.

 

It does suck to realize that there are things that friends can do that I would be able to do if I didn't have all these medical bills. But, I've lived without these medications and honestly, life without my meds is not a life I want to live.

 

I'll try to be careful with this next paragraph as I don't want to get preachy but hope to just help encourage others as I've struggled with these same issues. I push myself to stay really thankful that there are these medications to ease the symptoms and make life more bearable. Also, I think while we all need to vent and get stuff off of our chests - myself totally included in that! - we also have to be careful to not just dwell on the negative or how overwhelming something seems. Our mental disposition toward issues really does affect us. If we're convinced we're gonna have a crappy life and never be able to pay our bills - it becomes a self-fulfilling prophecy...as much as it might feel fake or unnatural I have learned to force my mind and mouth to say - I will have the money to pay my necessary bills. I will have/keep a good job. It almost sounds silly, but it really does change our minds and lives. It's not something you can put under a microscope, but I've seen it work in my life and in the lives of everyone I've seen apply this principle.

 

Right now with the cuts made to what we are allowed to set aside pre-tax in our spending accounts I have $800 less than last year to spend on co-pays, etc. and with insurance changes I'm more in the hole than I was a year ago. On paper I have no clue how I'll afford my dr's and medications through the end of the year. However, I'm going to keep on saying that I will have the resources I need to get this medicine and see these dr's.

 

Also - when I was uninsured Cephalon who makes Provigil approved me two years in a row for free medication. There are a lot of resources out there if we'll just put forth the effort (which as a narcoleptic is like this HUGE irony!! ha!) to find them.

 

I know we can all go on to live better lives even if they're not what others have, we have our measure of life to enjoy and share. :) 



#5 jennel

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Posted 20 July 2013 - 01:04 PM

Just to clarify - I have a lot of other conditions in addition to narcolepsy - so your bills may well be less! I am hopeful that treating the narcolepsy may lessen the intensity of my other conditions as I should now be getting some quality, healing sleep. But that is yet to be seen. :) And when I said I spend about $3000 that is for a year. I have a pretty crappy credit score due to unpaid medical bills, but thankfully apartment offices tend to view that bad credit differently and I was also able to secure financing for a new car - though it is a higher interest rate, I've learned it's not as high as some folks. It is challenging to learn that you have to figure out what bills are gonna most affect your credit rating. I try to pay what I can on my medical bills, but for me, I can't stress the bills that I can't pay. I just have to let that go and as far as the dr's I need to continue to see I often have to work out payment arrangements. Often if you make an honest, personal plea to the dr when your bills get out of hand and ask what can be done with an attitude of wanting to meet your obligations but perhaps not having the immediate funds to do so, it's amazing what arrangements can be made and what debt can be forgiven.



#6 drago

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Posted 03 August 2013 - 07:21 PM

Just FYI, "pre-existing conditions" only applies to someone who has had NO insurance or non-continuous coverage of insurance prior to applying for new health insurance. The basic gist: insurance companies wany HEALTHY people to buy insurance. That's how it works - healthy people pay premiums but, since they are healthy, use less of the health care system, and therefore insurance companies make money even though other people use the health care system a lot.

Previously, insurance companies used the excuse of "pre-existing conditions" to punish/enforce this -- that is, if someon waited until they were sick and needed insurance to actually BUY insurance, they made you wait a year or something like that before you could use all your benefits. However, for people who had insurance coverage (even minimal coverage) before applying for new coverage, "pre-existing conditions" wouldn't apply. Also, I believe pre-exisiting conditions is illegal now. Right?

 

I'm sure I've grossly over-simplifed the scenario, but that's the basic gist.

 

Anyway, in terms of what your plan will cover, sometimes insurance companies are JERKS about coverage -- meaning, they'll reject your prescription on some B.S. technicality, BUT your doctor can often appeal it. It might be a pain in the butt for the first month or so after you transition, but I don't believe an insurance company can legally deny paying for a medication simply because it's expensive. (That's why they try to reject you on B.S. technicalities like some numbers from your MSLT or something. But like I said, doctors can appeal those.) They need to have certain 'reasons' for denying you coverage -- usually they look for lack of diagnosis or an improper diagnosis.

 

Of course, my experience is limited to only 3 different insurance companies. Someone correct me if I'm wrong - but isn't it illegal to deny coverage of a legal, prescription medication due to high cost?

 

I've heard of people not being covered for medications that are considered "psychiatric" medications because the insurance plan doesn't cover any kind of psychiatric care. I've had to deal with not having a medication covered because my MSLT test was 8 minutes, and the "required" 5 minutes (no joke!) of average REM onset time -- luckily the doctor appealed that one. BUT I've never heard of anyone not getting coverage because "that prescription is just too damn expensive!"

 

Again, please correct me if I'm wrong.

drago



#7 Samwise

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Posted 16 August 2013 - 11:01 PM

I was very worried about mine being covered but I haven't had a problem so far. Granted, I have only been on Xyrem since I've had my work insurance but my copay for nuvigil actually got better when I switched to my employers plan. I pay $35 a month for each one, so $105 total (I have an AM and PM prescription for Nuvigil). My Xyrem is around $4K a month though - yikes!





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