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#21 Buzzm1

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Posted 01 March 2016 - 01:37 PM

Finally, an advertised U.S. generic Gleevec price:

 

$10197.59 Generic Gleevec‎ http://bit.ly/1TP9kDc

 

a 6% discount to the brand name

 

Imatinib (Gleevec) Cost/yr. USD

U.S. Gleevec $132K
U.S. Generic Gleevec $124K
Canada Gleevec $46K
Canada Generic Gleevec $6.5K

http://bit.ly/1mTVH8x


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

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#22 Anti-Matters

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Posted 01 March 2016 - 02:52 PM

But look! You can take $5 off your first purchase! That'll make all the difference.



#23 Buzzm1

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Posted 09 March 2016 - 11:47 PM

This drug is defying a rare form of leukemia — and it keeps getting pricier http://wpo.st/TKWK1

 

When the drug company Novartis launched its breakthrough cancer medicine, Gleevec, in 2001, the list price was $26,400 a year. The company's chief executive acknowledged it was expensive, calling it an "uphill battle to win understanding for our decision."

 
Today, that hill is a mountain. Since Gleevec was approved to treat a rare form of leukemia, similar drugs have come on the market — and the U.S. wholesale list price for a year's supply of that little orange pill has soared to more than $120,000.

 

Imatinib (Gleevec) Cost/yr. USD

U.S. Gleevec $132K
U.S. Generic Gleevec $124K
Canada Gleevec $46K
Canada Generic Gleevec $6.5K

http://bit.ly/1mTVH8x


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 chriskuo

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Posted 10 March 2016 - 01:38 AM

I don't think anybody in the US buys their Gleevec through Blink.

Most people get it through a pharmacy benefits manager attached to an insurance plan.

The insurance companies negotiate a discount with the manufacturer, which is much more than 6%, but is opaque to outsiders.

We don't really know how much the insurance company/sponsor is paying.   For people under 65, the drug companies are happy to reduce or eliminate the copays so that they can get the big money from the insurer.  For people on Medicare, starting with a high list price leaves more money for the drug company after the cost sharing in the catastrophic phase of Medicare Part D takes effect.

 

Yet, Americans re-elect their congressman who sanction this system term after term.  There are signs this year that presidential candidates outside the mainstream are having an impact, but the rage of angry white men does not guarantee that we will get a better system.



#25 r06ue1

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Posted 10 March 2016 - 06:35 AM

My company uses CVS Caremark, here are the costs I pay (only $10 a month now with the Gleevec card) and what CVS pays according to the Caremark website:  

 

Gleevec 400mg Tablet
Brand    Covered by Your Plan
You pay $140.00 or 1% of the cost. 
Your Plan pays $9,821.24 / 30 days
 
 
Imatinib Mesylate 400mg Tablet
Generic    Covered by Your Plan
You pay $140.00 or 1% of the cost. 
Your Plan pays $9,569.38 / 30 days
 
Last year when I checked this information, I believe it was about the same (minus the generic of course which was not available) but one thing they did list was the price without any insurance at all which was over $20,000 a month, absolutely insane.  Note that my insurer pays nearly as much for the "generic" as the brand which is probably why they are allowing me to stay on the brand name.  Everyone in America is paying for our insane drug prices, they just don't realize it.  The only difference between America's system and the Canadian system is that in Canada, everyone is covered and at much lower cost while we in America pay out the ass so that the top 1% can make out like bandits (which they are).

08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#26 scuba

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Posted 10 March 2016 - 07:17 AM

Here is an excellent summary on the generic vs. branded TKI landscape: generic gleevec.

 

http://www.healio.co...ancer-look-like

 

I was particularly struck by this apparent fact in the law:

 

"Sun Pharmaceutical received final FDA approval to produce generic imatinib for the U.S. market in December 2015. Being a first-to-file product, Sun received 180 days of marketing exclusivity, or protection against competition from other generic manufacturers."

 

My opinion is what the heck is the purpose of patent expiration if a company is granted continued exclusivity? This is what has to be changed in the law. When a patent expires - it expires. Open competition should reign after that. AND ... the patent period should be shortened anyway. That is the best way to reign in the out of sight prices without affecting R&D investment into new drugs. We know the profits are insane - so cut back the patent period. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#27 crob20

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Posted 10 March 2016 - 11:29 AM

I believe the 6 month exclusivity is common...not just between Novartis and Sun. When something goes generic it's usually 6 months to appreciate the lower price.
Carol
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

#28 kat73

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Posted 10 March 2016 - 12:24 PM

I don't know how to stick a link from somewhere and put it here, so y'all will have to find this on your own - awful sorry!  But there was a very interesting article about Gleevec pricing and the whole generic/patent/Sun Pharma thing in this morning's Washington Post on the front page.  A couple of things from it:  when Sun Pharma's exclusive time is up, the price is expected to fall a LOT.  Another thing I thought was interesting:  the actual cost of making the pills is $216.  For a year's worth.  Amazing.  It's a great read, although be warned, it's pretty long.  (I hope they don't abridge articles when they put them online - don't know.)


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#29 scuba

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Posted 10 March 2016 - 12:36 PM

Here's the link:

 

https://www.washingt...:homepage/story


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#30 Buzzm1

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Posted 10 March 2016 - 12:45 PM

I don't know how to stick a link from somewhere and put it here, so y'all will have to find this on your own - awful sorry!  But there was a very interesting article about Gleevec pricing and the whole generic/patent/Sun Pharma thing in this morning's Washington Post on the front page.  A couple of things from it:  when Sun Pharma's exclusive time is up, the price is expected to fall a LOT.  Another thing I thought was interesting:  the actual cost of making the pills is $216.  For a year's worth.  Amazing.  It's a great read, although be warned, it's pretty long.  (I hope they don't abridge articles when they put them online - don't know.)

kat, are you referring to this article http://bit.ly/1p9yK2D


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


#31 MACELPatient

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Posted 10 March 2016 - 03:58 PM

My insurance provider NHP will no longer cover Gleevec now that it has a Generic available thru Sun Parma.  I received my 1st months supply last week.  It's also now being delivered thru CVS's Specialty Pharmacy.

 

It's 100% covered due to Massachusetts law.  Perhaps people can/should start lobbying their State reps to pass similar legislation in their States to get these drugs better covered by insurance providers.



#32 Gail's

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Posted 10 March 2016 - 09:43 PM

Oregon is also a state that requires your insurance to pay for oral cancer treatment at the same rate as IV cancer treatment. Thank goodness for that! It's actually going to be way more expensive for me when I'm on Medicare since they aren't bound by Oregons law.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#33 chriskuo

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Posted 10 March 2016 - 11:21 PM

Drug pricing is a political issue. The same drug companies that charge sky-high prices are the same ones that are selling it for a 1/3 or 1/2 in other countries. That is because the voters in those countries elected representatives who put controls on drug prices.

State laws are fine but as pointed out they don't help those on Medicare and they still cost the taxpayers and people paying insurance premiums a lot.

CML survivors need to band together with other cancer survivors to turn out the current House and Senate members who are supporting the current system.

Note what a group of angry white men have accomplished with Trump so far this year. Cancer survivors can be just as successful or more if they put their minds to it.

#34 chriskuo

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Posted 10 March 2016 - 11:25 PM

Be skeptical of what Caremark says they pay for Gleevec. The drug distribution channel is opaque.

Similar to dealer invoice price on new cars, there are discounts and rebates that may not necessarily show up in what is reported on their website.

#35 kat73

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Posted 11 March 2016 - 11:30 AM

Thanks Scuba and Buzz - yes, that was the correct article from The Washington Post 3-9-16.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#36 SUE

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Posted 12 March 2016 - 09:47 PM

As I mentioned in an earlier post, I emailed Senator Mark Kirk urging him to do everything in his power to enable Medicare to negotiate prices with drug companies.  I never heard back from him.  Apparently drug companies are more important than constituents to  Mark Kirk, Republican senator from Illinois.

 

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#37 Buzzm1

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Posted 13 March 2016 - 05:38 PM

The pharmaceutical industry spent nearly $230 million on lobbying last year, some $65 million more than any other industry.  Members of Congress are recipients of much of this money.  

 

Replies from members of Congress aren't necessarily timely; I've received replies up to two months later, but they don't always reply.


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


#38 chriskuo

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Posted 15 March 2016 - 03:31 AM

It is a waste of time to try to change Kirk's mind.  He needs to be defeated in November.  You and people who agree with you know how to vote.  Kirk is one of 5 key senators key to the control of the US Senate this year.  Turning out these 5 senators are critical to reform.

 

Drug prices are a political issue; they are not a constituent service issue.



#39 rcase13

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Posted 15 March 2016 - 07:25 AM

I think part of the problem is a lot of people are like me and not very political. I don't know who to vote for to change things. We need our own lobbying group. The drug companies have theirs we need ours.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#40 roamingdoc83

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Posted 15 March 2016 - 07:59 AM

Contracted in 2009 while on Cobra... basically from that point on unable to obtain insurance (Cobra was not 'real' insurance). Cost me my 401 and other retirement savings. Will work until I die now. Was forced off for 19 months, ran out of dough, got real sick. Now on an assist program so the company is helping. America has a history of 'barons' (steel, railroad, cattle, etc) and they were not particularly amenable to oversight or direction. Ma Bell and other 'industrial giants' were (not really) trust busted and don't forget that "union" dock hands refused to load west coast ships heading to our Pacific Marines with food and ammo in WWII. Corruption, indifference and gouging are "part of man's baser nature" and historically only one thing really countered that trait. Dare I suggest Judeo-Christian morality (and of course someone will bring up the old Testament and speak of God ordered death, jeez). Well, it is ONLY going to get worse even as, perhaps the price of Gleevec drops a bit. As long as humans take advantage of other human's adverse conditions (and recall during the Northridge earthquake in CA vendors were selling small water bottles for $20 each!) we will have these issues. No moral guidance, man's shifting laws combined with greed and lobbying? What do you expect?






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