23 replies to this topic

[Frogiegirl]

Just a crazy crappppppyyy day! Found out my current insurance is now considering tasigna A tier 4 drug(was previously a tier 2 drug=25$ copay) starting Jan 2015.  Leaving me responsible for 20% of the retail price I.E $1700.00!!!!. So I thought ok that's not to bad since I have the tasigna copay assistance card, which I then checked and is expiring on December 31, 2014. Ok that's not horrible Ill just call and request a new one right??? Soooooo I just did that and they said they do not have one coming out for next year and to try them back at a later date!!!! WTH is going on!!!! I will not subject my family to this financial burden! Anyone have any answers for this? or run into the same thing??? check your plans people, they are drastically changing things and its not for the better. Not sure of all the politics of things but I'm sure the "Obama Care" has something to do with this??? EEEEEKKKKKKK!

[Marnie]

All of the TKIs have been Tier 4 drugs for as long as I've been on this merry-go-round.  Typically, it isn't the drug status that changes, but the insurance plan options.  It's very important to be sure that you are familiar with whatever options are available to you so that you choose the option that best fits your needs.  The ACA has nothing to do with it. . .insurance companies, and the choices that your employer makes about insurance packages are what is to blame.

[rcase13]

Your prescription plan should have an out of pocket maximum I would think.

[chriskuo]

Who provides your insurance?  Do you have a choice of plans?

I found that some of my choices for next year have a new separate out-of-pocket maximum for prescription drugs of $2100.

[Frogiegirl]

Marnie, it absolutely was a tier 2 drug this year. they sent me a notice letting me know beginning jan 1st 2015 it will now be a tier 4 drug. I guess I should consider myself lucky that it was only a tier 2 for a year huh?  I'm just glad they gave notice and I didn't just renew that plan before looking into other options.I Still have a week or so before the other options are revealed during open enrollment. Rcase13 the maximum out of pocket is 4500.00 for medical and prescription combined. now I just need to see if there are any better options for next year, and how the Hell im going to come up with that much money right upfront??? or do they give you time to pay it? Select health is the insurance company. I remember when I was first diagnosed 10/22/2013 there were laws in certain states that made oral chemo no more then a small copay.......I wonder if Utah or any other states are going to catch up to this? feeling helpless and at the mercy of drug companies and insurance companies is weighing SOOOO heavy on me right now, not sure I wont break  Anyone have any info on the tasigna copay card? do they just not come out with it until end of December or is it really going to be a thing of the past??? hmmmmm???

[rcase13]

$4500 max out of pocket for medical and prescription is really good. Mine is $10,100. I get insurance through my wife and her job only offers the one plan.

[Frogiegirl]

Rcase13 can I ask how you handle that emotionally??? I know guys are tough and girls can be a little dramatic....  but I hate feeling like a burden to my family. I'm the saver, and I feel like I have no control. I have two little boys and I don't want to leave them with nothing because of medical bills. I guess I'm just scared   I need to just suck it up. I've thrown around the idea of just quiting the meds, but that is not fair to my little ones.  Ive seen the same therapist over the last 13 years for different issues, and I went to make an appointment with her recently only to find out she had passed away  So I guess I'm feeling a little lost right now. Time to put on my girl pants, and push on.

[rcase13]

I am able to work and we have an emergency savings account so we will be OK. My wife also works so that helps. We just try to be happy and hope the Tasigna does it's thing.

[JPD]

The pills are a medical miracle.  And Im SURE your kids would rather have you around for many many more years and then get stuck with the bill as opposed to you going off them and not being around.

 

Cancer sucks

Cancer is scary

The drug prices are bullshit

 

However, the vast majority of us are all having our lives saved by these drugs (reaper gonna get us, but these drugs make it likely to be something else).

 

First, try and chill out a little.  Freaking out isnt helping (trust me, I know of what I speak... just catching me on a good day).  Its not a problem until its a problem - and right now your 'monkey mind' is having its way with you. 

 

Take the pills, live your life.  Be here now.  Etc...

[Marnie]

Are you on an HSA?  Those are frustrating.  A bit after diagnosis, that's the type of plan that my employer went to, and it was devastating.  I went from paying a reasonable amount for my meds, to paying $4000 the first day of the year that I had to get my Gleevec.  Then, to make matters worse, my employer's plan switched from school year to calendar year, so that after paying the $4000 in September, I was going to have to pay it again in January!  I ended up having to drop my own plan and go on to my husband's plan, and pay for it, rather than having it paid by my employer.  Pissed me off to no end. . .that's another story.

 

So I feel your pain.

 

Very surprised to hear that your insurance company's formulary had the specialty drugs listed as tier 2.  On all of the formularies I've looked at they were all tier 4. . .and (as I"m sure you've discovered) it's incredibly important to see what the out-of-pocket is for the different tiers.  My husband's plan has two options to choose from.  One has a percentage and the other has a fixed amount.  Obviously we have to choose the option that has the fixed amount.  Paying a percentage of these TKIs would break the bank (though, as many have pointed out, there is a maximum in most plans.  .  . though HSA maximums can be incredibly high, especially if you are on a family plan. . in my school district, it's $10,000.  That's a lot of money each year.

 

Best of luck as you work things through.  It is just so incredibly important to read and understand your insurance plan!

 

Marnie

[tiredblood]

What my plan paid on mine when up $2,385.88 from February to November.  So now, rather than $23,000+ it is $26,000+

 

 

[Frogiegirl]

JPD I'm glad you say it like it is.  Sometimes I think I need a big ol smack in the face to deal with the reality of this crap. I still consider myself a newbie to this cancer only being a year in and trying to keep things as they were before diagnosis. Marnie yes its an HSA. and it stinks. Feeling helpless can make you do dumb things to feel like you've gained control......which you haven't  I'm sooo close to PCRU its probably messing with my sanity. I'm .00020.

[IGotCML]

Your PCR number is very good and you have gotten to MMR in under a year.  That is very positive.

 

I am also on a HSA plan as that is the only option offered by my employer.  Max out of pocket for me is 5,000 per year.  I hit my deductible in the first month of the year for my Tasigna prescription.  Extra money up front, but there's no way around it for me.

 

Does your oncology office have any information to help with the financial aspect of your treatment?  They may be able to offer some advice or point you in the right direction for assistance with the cost of the treatment.

[Marnie]

Your numbers are great!!

 

And I'm with you. . .I HATE HSAs.  They are awful.  Except for the employer.

 

m

[Frogiegirl]

IGOTCML, Marnie  I'm glad you think my numbers are great.....I guess I was hoping for PCRU on my last BCR>ABL  My doctor had agreed to letting me take 300mg(which I did for 6 months) of tasigna daily but when I went to see him and get the BCR/ABL test done he put me on 450mg daily before he even received the results.....He said his reasoning for this was because he thought I was leveling out and not dropping further. he called me 3 days later to tell me I had reached MMR on 300mg but that I needed to stay on the higher dose to get zero's across the board. oh how I want to go back to 300mg daily  I hate the "chemo fog" as it takes me to long to recall snarky comebacks when my hubby is teasing me

[JPD]

Frogie, You are having a terrific response - you are taking only a total of 450mg per day (three 150mg pills)?  That is a great response on not even the full standard dosage.  Do you find the chemo brain that much worse at 450 than you did at 300? 

[Frogiegirl]

JPD Absolutely! 450mg is seriously a lot harder to endure then the 300mg daily was. My aches are worse and deeper on the 450mg and the dreaded  "chemo fog"  is also worse. on 300mg I can concentrate better and recall those oh so scientific words better. You know the ones that are not "the" "is"  "it".....ect.  seriously sometimes you just have to laugh at yourself. I'm hoping in December when I go back to the doc that I have reached PCRU and can go back to 300mg daily

[Marnie]

I definitely explain the brain fog/word loss to Sprycel.  It makes me feel much better to attribute it to medication than to "old age." 

 

I have noticed a huge change in my ability to have words at my beck and call.  Also, I seem to have more and more episodes of the wrong word spilling out of my mouth so that my sentences don't always make sense.  It's very frustrating, especially having spent my entire career speaking in front of a classroom of students. 

 

Not sure how much of it is the age thing, but I do think that Sprycel plays a significant role.

[Frogiegirl]

You are oh sooo correct Marnie! these drugs make you feel like you know what you want to say but cant find the words to express it! I used to be able to outsmart and out wit any comment someone threw at me......now I'm like "stay tuned" it will come to me later and Ill write it down and let ya know what it was. because I will forget if I don't jot it down lol!  Its definitely not old age. these miracle drugs take there toll on our brain.....which is weird to think what 20 years on them will do?

[sunshineC]

Frogiegirl n Marnie - I thank you soooo much for this discussion on 'chemo brain' and 'lost words'!!!!  There was a part of me that thought I'm not only getting old all of a sudden, but I had a feeling Alzheimer's was starting to surface!  That lost word thing drives me CRAZY!!!!  I always had a fast, witty comment too - now I sit and stare into space trying to think of something as common as... say "sink"!!!  Sometimes I have to try to describe that 'thing' I'm trying to say to my husband cause it's just not coming fast enough for me!  I feel so much better now girls - thank you!  I also have that morning cloud thing - I used to get up at the last minute, get dressed and run out the door.  I loved it!  Now I get up, get coffee, and just sit on the couch staring blankly into space trying to 'wake up' or 'clear the cobwebs' as I just told my husband this morning as he asked if I was all right.  It sux and wreaks havvoc all around, but at least I know it's not just me now!

Frogiegirl - I remember my first onc telling me that I could call the Leukemia Assoc to possibly get financial help there.  I haven't had to yet, (knock on wood) because of my low co-pay on my insurance.  I do pay a pretty penny for that insurance, but am very grateful for it - especially now.  Try that.  It can't hurt to try.