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Medicare Sticker Shock - Gleevec vs. Generic Imatinib

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#1 snowboots


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Posted 26 October 2017 - 10:20 AM

I am turning 65 in January and have been researching drug plans. I have been on brand name Gleevec since the beginning and I am terrified of going generic. None of the prescription plans I am checking even  cover Gleevec. Well, I found one that will for $146,000/yr. I am on my husband's insurance now (he is turning 65 in Jan. also, so we are losing the insurance) and pay a VERY low co-pay - I am embarrassed to tell you how low, but less than $200/yr. Now it seems I will be forced to go generic at a cost of about $10000/yr. with the best plan I have found so far (SilverScripts). I am thinking it might be better to just buy private insurance, but then I might have trouble getting on a decent Medicare plan in the future. It really stinks that it seems like when you turn 65 you are considered a second-class citizen being forced on cheaper and possibly less effective drugs.  Basically, I am just venting my frustration and screaming inside at the unfairness. And possibly looking for feedback on generic imatinib. 

#2 Dom


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Posted 26 October 2017 - 01:30 PM

Snowboots, I turned 65 this past March, and

i'm in the same boat you're in.  I too was on brand name Gleevec but turned to Imatinib even before medicare came in.


A few points.


First, don't worry about generic imatinib.  The transition for me, and many others on this site, was very smooth.  There was a change in my numbers, but I don't know if that wouldn't have happened even on Gleevec, and my numbers are still in the safe zone.  Palteauing on Gleevec and Imatinib is very common.


Second, My co-pay before medicare was $0.00.  Yep, Gleevec, and then imatinib, were free.  But my premium was $6,500 / year.  Now, on medicare, my co-pay is high but my premium is only $37.50 / month, so for the year the TOTAL cost is still only $6,500.  Not much of a change at all.


Hope this helps.  Stay well.  

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34

#3 Antilogical


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Posted 26 October 2017 - 02:36 PM

I switched to Medicare in April.  Through March, my co-pay was just $10 per month.  This year's 9 month total while on a UHC  Medicare Advantage plan will be around $7200.


The switch from Gleevec to Apotex's generic imatinib was a non-event.  My latest PCR test result was "Not Detected", and I have not noticed any new or worsening side effects.  My only observation is that the coating on the 100mg tablets is chipped around the edges.

Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.

#4 AllTheseYears


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Posted 26 October 2017 - 02:43 PM

Maybe I need to explore a different insurance company for Medicare Part D.  After my deductible, my copays are about $500 per month, so my annual out-of-pocket for Gleevec is about $11,400 per year.  Anyone have suggestions for a new Medicare Part D plan? 

#5 Buzzm1


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Posted 27 October 2017 - 12:16 AM



It's always a good idea to shop around. Cost is an important factor in any purchase, especially when it comes to health insurance, but it's not the only thing to consider.

There may be dozens of Medicare plans in your area, all with different costs and levels of coverage. How much are each plan's premiums and deductibles? How much will you pay for the benefits and services you're likely to use? Is there a limit on what you'll have to pay out-of-pocket for the year? If you're currently in a plan, how does that plan compare to the other plans that are available? Thinking about these things will help you make a smart choice to get good value that meets your personal health care needs.

Prescription drug coverage is another thing to consider. Does your health plan include coverage for prescription drugs? Or will you need to find a separate Medicare Part D plan for drug coverage? How much will your prescriptions cost under each plan? Does the plan cover the drugs you take? Remember, everyone who reaches the Part D coverage gap (or "donut hole") will benefit from a discount of 65% on covered brand-name drugs.

Only you can determine what mix of benefits and costs will work best with your needs and budget, but we can help. The Medicare Plan Finder makes it easy to compare plans so you can pick a plan that's right for you. After you've narrowed your options, call the plans you're interested in to get more details about their benefits and services, or check out their websites.

You have until December 7, 2017 to review, compare, and join a 2018 plan



Medicare Plan Finder

Attention: You can review, compare and join a 2018 plan through December 7, 2017.



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


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

#6 chriskuo


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Posted 27 October 2017 - 01:45 AM

Under virtually all street Medicare Part D plans, you will be hit under the Coverage Gap for thousands of dollars and then in catastrophic phase, when you pay 5% of the drug price, you will pay many more thousands.   A total of $7200 is in the ballpark for how almost all Medicare Part D plans.


Your best hope would be to switch to an HMO like Kaiser, which does not price based on the Medicare Part D formulas.


Failing that, you need to work hard with us to get the Republican majority out of Congress.  They are the fans of high Medicare drug prices.

#7 crob20



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Posted 27 October 2017 - 12:25 PM

This is an outrage! Specifically, people onmedicare are not eligible for rebates or pharmaceutical company patient assistance plans. They gave with one hand and took away with the other. I don't think anyone had a clue about the outrageous prices we have to pay today. I got help from Sun Pharma for the new copay for Gleevec this year which went to 750$ vs. 150$ when I used to get brand name. I have a Cigna pharmacy plan through my husbands union retirement and not part D though I am on Medicare. L&L society offered me help this year but I didn't need it. Are people eligible to apply to them?
Diagnosed 3/09 121,000 WBC. Asymptomatic
Imatinib 400 mg started
2/10 PCRU
3/16 still PCRU but side effects worse. Stopped Imatinib for a week. Tried Sprycel 2 days.
4/16 restarted Imatinib at 300 mg.
6/16 showed 1 transcript
9/16 PCRU returned
5/1/17 Imatinib 200 mg
8/17 showed "1 transcript"
10/17 PCRU returned



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Posted 27 October 2017 - 04:38 PM

Posted in another thread.


There are three companies in the US that make generic Gleevec.
Sun, Teva, and Apotex. I read this on Bloomberg.
It is interesting to note that most manufacture of generic drugs are a  subsidiary of the major drug companies. I have not researched these companies pedigree. I don't have the Lawyers, Guns and Money (Zevon).
The FDA has applications pending for other companies to make generic Gleevec. When asked about the holdup the FDA had no comment.
The hold up for a price drop has nothing to do with Democrats or Republicans, and every thing to do with the machine.
The high price benefits all the people at the top, and this will be a slow decline until other TKI's go generic. There is some talk about government being able to negotiate discounts, it's only talk. A politicians greatest gift.
So you folks know i too am in this boat. 

DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
Sprycel 100mg.
PCR   02/01/2017    0.146 IS
PCR   08/07/2017    0.022 IS
Next PCR:           12/XX/2017

#9 Gregda


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Posted 20 November 2017 - 11:46 PM

Oh Sh!t.... I'm just now researching what Medicare Part D 'pays'.... How does anyone with income over $15,000 a year afford the catastrophic $5,000 doughnut-hole, and then a monthly drug co-pay of several hundred?  Are we expected to wipe-out our savings/IRAs, then declare bankruptcy ?  Are we to become wards of a state?  My Oncologist says he's researching this.


Are they activist groups we collectively can join to tell our elected officials this is not affordable ? 

#10 chriskuo


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Posted 21 November 2017 - 03:40 AM

The coverage gap (donut hole) is the second phase of Medicare Part D, followed by the catastrophic phase in which you pay 5% of the cost of the drug.


Most Americans now believe that universal health care is a right, but the people in charge of the government have a different philosophy.


They feel you should be grateful that you only have to pay $6K-$8K/year for $120K of list price drugs.  They say that Americans are charitable people and that people who are impoverished by their drug costs can turn to charity.

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