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TKI co-payment : what's the norm?


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#1 LivingWellWithCML

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Posted 09 January 2014 - 11:43 AM

Hi everyone,

I hope all of you are having a healthy and happy start to the new year.  I wanted to see if others would be willing to share a little bit about how their TKI prescription drug coverage is working for 2014.  Our company had to change policies and a couple of things happened.  First, when evaluating different carriers, our broker was unable to figure out how much Gleevec would cost me for the various carriers' plans.  Secondly, I was paying $35 for Gleevec 400mg (30 day supply) with our current carrier for the latter part of 2013, and we renewed with that same carrier (BCBS) with an understanding that my co-pay might continue at that same price.  However, I've followed up both with BCBS and the specialty pharmacy and I've been informed that my co-pay is now up to $250/month.  It might reach a max based on my individual deductible, but I'm not sure -- BCBS has been unable to explain to me how this is going to play out.  Ouch.

So, I'm curious to find out if this expensive co-pay is the norm for many of us, or if I'm more of an exception.

Thoughts from others?


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#2 Taylor

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Posted 09 January 2014 - 11:55 AM

I think I have pretty good coverage through my work (UHC and express scripts).

My Tasigna copay is $150 a month. Thankfully I enrolled in novartis's mycmlcircle and appear to be locked in to $150 copay assistance until 2015. So my meds are currently free.

I still see the receipt of $8k billed to insurance, though...dang.



#3 Frogiegirl

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Posted 09 January 2014 - 01:05 PM

Hi Dan!     

I too have BCBS as my primary. I was just recently diagnosed 10/22/2013 and received my first 3 months free of my Tasigna because of Novartis( coupon drug card) I was evaluated by the center I receive my treatment from and was asked why I felt the need to end my life....when I responded that I refuse to dig a financial hole for my young family to have to deal with because of the price of the meds, they told me their pharmacist would take care of the meds? I received my last free month supply about a month ago and it is almost time for me to receive another one without the Free drug card. I called my CML nurse and she said it will arrive soon and its been taken care of. I sure hope she is right. When I did call my insurance they said my copay would be no more then $300 per month.(after I met my deductible of 3200 for individual) I did not mean for my meds to be free, I just didn't want it to effect my family soooo much that they had to completely change there lifestyle.(not that my diagnosis hasn't ) I have yet to see how much this next 30 day supply will be, but my nurse is kindof an airhead so I hope she is not just being misinformed. I will let you know as soon as I do what amount if any is my portion. Sorry for the loooong explanationI was quite pissed off when I found out how much our CML meds were, but when I did a little research I feel a lot better about why they need to be so high. I guess Novartis invested ALOT of money to fund research for these TKI drugs and there are so few of us being diagnosed and the number is declining every year so they could of just thrown there hands up and said its not that many people affected by it so why invest the money.....but they didn't. I am sooo greatful for that. and a little less hateful towards the drug companies


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#4 LLawrence

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Posted 09 January 2014 - 02:14 PM

$35 copay for Gleevec.  $45 when I transitioned to Tasigna.  I'm very fortunate.

LL



#5 Cliffee

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Posted 09 January 2014 - 08:11 PM

BCBS of Oregon.

$25.00 a month (Tasigna 600mg a day) Was  $25.00 while on Gleevac.

Extremely lucky,... I guess



#6 mark1963

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Posted 09 January 2014 - 08:23 PM

are you sure that is your copay and not a deductible? I have a $50 copay on rx drugs so my first month is deductible + copay of 30 also bcbs

mark



#7 Buzzm1

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Posted 09 January 2014 - 09:09 PM

Hi Dan,

won't pick up my 30 day supply of Gleevec until late in the month so will find out then

have been tracking the retail price of Gleevec

it has increased steadily from $3900/mo. on 10/2009 to $7500/mo. on 12/2013

worldwide $560/mo. India rejected Novartis's attempt to evergreen the patent

retired, on a Medicare Advantage Plan through Kaiser

was $10 last year, after blowing through the donut hole

Buzz

I hate that they won't mail it out like other Rx's .. have to pick it up


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#8 mariebow

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Posted 09 January 2014 - 10:11 PM

I am fortunate that I only pay $20 a month through BCBS through my retired  husband who worked for goodyear for 38 years.  I hope this stays the same.



#9 IGotCML

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Posted 09 January 2014 - 11:52 PM

I am paying $50/month for my Tasigna after I hit my deductible in the first month paying for the meds.  Aetna is my insurance company.  My insurance does not follow the calendar due to the nature of our business so it has not yet been affected by the Affordable Care Act.



#10 chriskuo

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Posted 10 January 2014 - 01:53 AM

My Sprycel copay went from $50/month to $250/month when my former employer converted its retiree prescription coverage from a private plan to an EGWP (Employer Group Waiver Plan)

integrated with Medicare Part D.  I spent much of last year in discussions with the insurance company and my former employer, due to the disinformation that was provided about the plan.

I have escalated through my Congressman and am now in touch with CMS in Washington.

Since CMS loosened the rules on EGWPs, there has been a rush of employers to convert to them to get the Medicare subsidy.  This has resulted in a surge of complaints due to the negative

consequences on members with specialty drugs.  CMS is started a project in November to investigate the issues.

Is anybody else out there being adversely affected by an EGWP?



#11 SunNsand

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Posted 10 January 2014 - 02:18 AM

We have an HSA (ick) Anthem BCBS policy through my husbands employer. We have to pay $10,000. out of pocket at the beginning of every year before they start covering anything. That is also on top of our monthly premium. Novartis is helping us with the $10,000. this year.



#12 LivingWellWithCML

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Posted 10 January 2014 - 06:35 AM

Wow, there are a lot of different situations out there - thanks for sharing!  I guess any insurance is better than none at all, but these higher co-pays are definitely tough on the wallet.  I have been told that co-pay assistance is the real deal and it's there to help take the sting off for folks who are trying to live their lives, raise kids, etc. -- so I might look into it if I can't figure out a way to get this co-pay to a more manageable level.  Thanks for your input everyone.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#13 Calvink669

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Posted 10 January 2014 - 08:04 AM

I pay $25 a month for Sprycel. I have UHC through JP Morgan Chase



#14 LivingWellWithCML

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Posted 10 January 2014 - 09:05 AM

Hey everyone,

So ........ I learned something new after many hours on the phone with BCBS and the specialty pharmacy this week.  Apparently, my G prescription on file was for monthly refills (this is what the doctor ordered??), so because of that, I was unable to order G in a 90 day supply, even though I was able to do that back in 2012.  I was trying to figure out what changed between 2012 and 2013.  Apparently, when the doc wrote my 2013 script, he wrote it for monthly refills rather than 3-month refills.  Sheesh!  That ultimately cost me a lot of money last year, because the co-pay is exactly the same for 30 day vs. 90 day, so I was paying $200 for 30 days of G and when I reached my individual deductible during the latter part of the year, my co-pay dropped to $35 for 30 days.  It all depends on the actual prescription that they have on file.  This seems so obvious to me now, but gosh, I'm just too busy trying to live my life than to figure all of this stuff out.  I rely on my care team to guide me toward the most informed, cost-effective decisions regarding my treatment.  So much for that.

Anyway, I got my doc to submit a new script for 2014 that is for 90-day refills, so when I order my next refill, I will make the same co-pay ($250) but for 90-days instead of 30-days.  That works out to ~ $83/month ... more tolerable.  I still cannot believe how much this cost me last year!

So my advice to everyone - if you haven't already, make sure your annual script is written for 90-day refills if you're doing mail order.  Not sure if it works the same if you're going retail pharmacy ...

Dan


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#15 Cathy

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Posted 10 January 2014 - 10:18 AM

Wow, I thought my co pay wasn't that bad its $125.00 a month and my employer won't pay for 90 days. which makes it allot more expensive for me. ( we joke they hope I'll die before so they won't pay for 90 days)  I had a sprcel card but they discountinued the program Oct 1st 2013. Does anyone know if Sprycel has another program to help with co pays? I'd like to find one!

It sure is expensive to be sick in the US I think. and I work for a large company too with decent insurance or I thought!

thank you

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#16 Guest_billronm_*

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Posted 10 January 2014 - 04:31 PM

Hi Dan,

  I used to get 90 day scripts, My ins co said they are only filling 30 day scripts, because our doses are changed so often now. Once they send it out they can't take it back. Once a month they call me and we schedule a date for my Sprycel to be delivered. Also when I went on Sprycel they started sending me 50mg pills, I was on 100mg at the time so I had to take 2 pills a day once again they said it's because the doses or the meds get changed. I'd like to try a lower dose like 20mg. Things are changing everyday with these ins cos. It's so scary, and bcbs has no idea what they are doing. If you call 5 people there I guarantee you'll get 5 totally different answers. I'm so grateful for my ins I feel so bad for all of you I sure hope things get straighened out soon. Everyday i'm afraid the other shoe will drop!         good luck    Billie



#17 Marnie

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Posted 10 January 2014 - 07:55 PM

There is a Sprycel co-pay card.  My old one expired a while back and I was paying for meds for a few months, but then I got a new card in the mail and activated it in perhaps November 2013.  Not sure if you can get into the program since the new year has started, but it might be worth a call.  Since I activated the new card, it has covered my co-pay.

Billie. . .I sent you an note on your personal e-mail, but maybe your e-mail has changed?  Drop me a line by e-mail.

Marnie



#18 mark1963

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Posted 10 January 2014 - 09:41 PM

in 4+ years I have never been able to do a 3 month supply. the still require a 6 month pre/re-authorization for the G. Screwed up a couple months ago and forgot about the authorization thing and the back and forth BS  ended up  in a 12 day delay. BC didn't care when I told them I was out, told me these things take time.

mark



#19 hannibellemo

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Posted 11 January 2014 - 09:40 AM

Sunsnsand,

I think I said it before, you do not have a health insurance policy, you have a catastrophic insurance policy. It's absurd that your company is touting that as a health insurance policy. Does it meet the minimum standards for the Affordable Care Act? You should have received notification from your employer on that. It would be worth it to see if you can't get better insurance on your own.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#20 hannibellemo

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Posted 11 January 2014 - 09:46 AM

Billie,

Did you get your PE after you started taking 50mg. 2x per day? Studies have shown that dosing twice a day keeps the drug in your system longer than the 1x per day dosing and can increase the incidence of PE (or something to that affect). I can't remember what dosage you're on now after the PE.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





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