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TKI co-payment : what's the norm?


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#21 0vercast

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Posted 11 January 2014 - 04:36 PM

I hate reading threads like these. I'm probably more concerned about the cost of the TKI's than the damn cancer itself.

Luckily, I only pay $25 a month for Gleevec or Sprycel. I have BCBS through a group plan at a union workplace, and my insurance requires that I order my meds from an online specialty pharmacy despite living only a stone's throw from two separate medical facilities that stock the drugs. That's only a minor inconvenience though.



#22 0vercast

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Posted 11 January 2014 - 04:39 PM

Agreed. I'd like to know if the plan meets the ACA minimum requirements, and how so? It sounds like one of those terrible plans that are getting cancelled.



#23 Buzzm1

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Posted 11 January 2014 - 04:49 PM

Overcast, just wondering if there is a retail cost difference between the three?


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


#24 SunNsand

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Posted 11 January 2014 - 04:58 PM

Yes it meets ACA requirements. We will be on it until the end of 2014 then his employer will stop offering insurance so we will be shopping for a new plan this fall. It's a Health Savings Account plan. $5,000. deductible for me and $5,000. for my husband. Insurance won't cover anything until $10,000. is paid out of pocket. We've had high deductibles for quite a few years, but it jumped to $10,000. July of 2013. Jan. of 2013 it was $6,000. total deductible up front.



#25 Marnie

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Posted 11 January 2014 - 06:06 PM

Many employers are going to HSAs.  My school district did the same a few years ago, which meant that when I got my Gleevec (I was on G back then), I had to put $4000 on my credit card when I stopped by the pharmacy, the first month of my plan.  Fortunately, I was able to switch to my husband's insurance 3 months later when the enrollment window opened.  Had I not been able to switch, I'd have had to do the $4000 deductible a few months later, because my school district switched their enrollment window from school year to calendar year.

Health care costs are high, and employers are doing all they can to put the cost on their employees. . .thus the many companies switching to HSAs.  I was amazed at how ignorant the average person is when it comes to understanding the medical system.  I was on our teacher's contract negotiations team and was unable to get the rest of the team to understand the consequences of accepting the district's proposal to switch from a traditional insurance plan to the HSA.  The district brought in people to pitch it, and the rest of my negotiations team assumed (I think) that my arguments and warnings against it were simply my own attempts to safeguard my own medical situation. 

Now they are suffering, and complaining.

HSAs do not work.  They encourage people to NOT see their doctor when they are sick, since they have to pay the actual cost, rather than a copay, and then after they've paid the high deductible, they run to the doctor and have every possible thing done resulting in unnecessary costs to the medical system. 



#26 Tom1278

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Posted 12 January 2014 - 10:38 AM

I have a Maryland state employee pharmacy benefit through my spouse.  Gleevec is $25 per month, or $50 per 90 days.  They won't fill a Gleevec 90-day prescription; however, I get the lower rate, so I pay $16.67/month.

I used to have BCBS through my previous employer, and I didn't have a co-pay because of oral "chemotherapy" parity laws in Virginia, where I worked.

Tom


Diagnosed with CML in July 2012 (33 years old)

MMR since March 2015; E453K mutation

600mg Gleevec

 


#27 story

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Posted 12 January 2014 - 03:28 PM

We are self employed and have had a BCBS policy for 20 years. Obviously after I was diagnosed in May of 2011, I was locked in to this plan and unable to undergo underwriting for any other plan  Our plan, while really crappy, still cost my wife and I $980 per month. My copay was 25% of $8600 for my four week rx of Tasigna...  The copay varied between $2000 and $2500 per four week script. Without the help of Patient Services Inc, I would not have been able to pay the copay. I am very thankful that the changes made by the ACA have been made. We have signed up for a premium plan that looks like my 4 week copay will only be $150.



#28 chriskuo

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Posted 12 January 2014 - 10:26 PM

Keep us posted on how the exchange plan works out for you.

For those on Medicare, most of the drug plans are not as favorable.



#29 August1

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Posted 13 January 2014 - 11:18 AM

I have a great POS Choice plan through Aetna, but I am dropping $250 a month in co-pay for Sprycel. Ugh. I also have to order through their pharmacy and ship to my house.



#30 MACELPatient

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Posted 14 January 2014 - 07:24 PM

For last 3 years was paying $30/m for Gleevec while with BCBS, Harvard Pilgrim.  Since Oct I've been with NHP and I have not had a single co-pay.  My mail order also changed from Curascript to Briova.  It's been a nice few months but the policy will change in April.  See what happens then.



#31 Guest_billronm_*

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Posted 14 January 2014 - 09:33 PM

Hi Pat,

I probably didn't explain it well, I started S on 100mg for a year and a half. Then went down to 50mg. I was taking 50mg  for another year and a half when I got my pe. A couple years ago when my iron level went low I had a 3 week break from S then onc had me take 100mg 1 day and 50mg the next day so I was getting 2 different mg scrips 100mg for one day and 50mg for the next day. I can't remember when they started sending me all 50mg pills so I took 2 pills together every other day. Ins co did that because doses are changing a lot so it's more cost effective for them. I'm still on 50mg. now and I can only get one month supply at a time instead of a 3 month supply I think most of the ins cos are starting to do that now, because if our onc changes our dose or meds  we can't send them back even if the boxes or bottles are unopened. I just finished up another month of iron infusions again. Once a week for 4 weeks. I just can't get my iron level up. They give me steroids,benyadryl ,& tylonel  thats the fourth set of treatments since May. I think the steroids are messing with my mind. I can't seem to get a grip on everything, massive brain fog I call it. They gave me 1 treatment without the steroids or meds and I got so sick that night, and the next morning I felt like I was hit by a bus, I hurt everywhere and that lasted 2 more days. I just hope it gets out of my system soon. I hope you're doing okay.            Billie



#32 chriskuo

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Posted 15 January 2014 - 12:50 AM

I called OptumRx/UHC today for my first Sprycel refill of 2014.  They have my prescription on record and my prescription insurance but the copay pricing is all fouled up (they are missing the employer benefit piece so

they are trying to charge me hundreds of dollars more than under the plan I actually have).

I am doing a rapid escalation in UHC and my former employer to get this resolved / meanwhile they are shipping but holding off on charging my credit care.  OptumRx has said their Resolution Desk will respond within

24 hours.  The benefits manager at my former employer already called her counterpart at UHC tonight.

Meanwhile, I printed off the page from my online OptumRx account which the shows that a 30 day refill at my local Walgreens would be $45.  I think the CMS Medicare cops should hold them to what

their website shows!!!



#33 Lizzybee

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Posted 15 January 2014 - 11:09 PM

Our deductible is $7,000/year, and after that BCBS pays 100%.  Overall, our family would pay more for health care if we had an 80/20 plan, so we are very happy with our high deductible plan with an HSA.  My employer contributes to my HSA (1/2 of the employee portion, so $1,750 this year), so that helps out.

I'm scared to death of what will happen when our plan renews in August, though.  A comparable plan on the exchange would cost us about $395/month more than we're already paying.  But BCBS is estimating that our premiums will increase by 40% this year, so who knows what our deductible will be raised to, to keep the premiums "affordable."  Under ACA, the deductible can be up to $12,700 for family coverage.



#34 matt92711

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Posted 16 January 2014 - 12:06 AM

Just reading this and was wondering if those of you taking Tasigna are aware that Novartis offers Copay assistance. At the following website you can apply for a MY CML Circle Copay card. If you are using Tasigna after the pharmacy bills your insurance they will then bill the Copay card at which point your Copay should be $25 per month.

Program requirements are that you live in the US (except for Massachusetts) and that you do not participate in a federal or state healthcare program (e.g. Medicare or Medicaid).

https://www.mycmlcir...egistration.jsp

I have used the My CML Circle Copay card since my diagnosis and it has saved me a lot of money over the years.



#35 MACELPatient

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Posted 28 January 2014 - 08:26 AM

So I just found out why my co-pay is now $0 for my Gleevec.  Massachusetts passed a law that states oral chemo medicines have to have a comparable price to standard cancer chemo/iv treatments.  I can only assume that the majority of those are covered under a typical insurance policy,  Here's the beautiful thing, I received a $240 reimbursement for what I paid last year.  That was an unexpected blessing.  Thanks you Massachusetts and being ahead of the curve on this stuff.



#36 0vercast

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Posted 07 February 2014 - 03:05 AM

Sorry about the late reply. There is a minor difference in cost between the three pharmacies, like a couple hundred bucks a bottle. "Minor," huh!  However, the online pharmacy is the most expensive of the three. Heck, the overnight shipping is an addition $50 that BCBS pays for. But if that's what they want...



#37 0vercast

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Posted 07 February 2014 - 03:13 AM

I work for a large company too, and they pay MILLIONS of dollars towards employee health insurance every year. Last year it was over $2.15MM. I'm to blame for about $100k of that, unfortunately. They'll try and cut corners any way they can. It's a shame they pull that 90-day B.S. That's gotta cost you a pretty penny.






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