Advanced Member
Posted 11 February 2016 - 11:47 AM
The biggest joke to consumers yet:
Gleevec
$12,146
Generic
$11,839
This is the wholesale costs my insurance has to pay Novartis, the retail is double that. The generic also comes with a $10 co-pay but it only works for 6 months and expires permanently (the Gleevec one does not). I told my pharmacist to keep me on the brand name since there really wasn't any price difference and the co-pay doesn't expire on it.
Totally pathetic.
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
Advanced Member
Posted 11 February 2016 - 12:21 PM
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.
Advanced Member
Posted 11 February 2016 - 12:40 PM
Based on the info r06ue1 provided, Novartis had the outrageous audacity to again raise the price of brand name Gleevec another 10%, while colluding with Sun Pharmaceuticals to set the price of the generic even higher than the previous price of the brand name. The pharmaceutical industry deserves to be tarred and feathered.
Novartis Imatinib (Gleevec) Pricing
$24K/yr. 2001 intro
$132K/yr 08/2015
$146K/yr 02/2016
U.S. generic available 02/01/2016 costs $142K/yr., almost 6 times the original 2001 price
Novartis's greed sucks; the cost of generic Gleevec elsewhere http://bit.ly/1vvuCg3
R&D costs for Gleevec http://keionline.org/node/1697
The "genius" of BIG PhRMA is in buying votes in Congress ..
BIG PhRMA is the highest spending Lobby in Washington DC
Senate Health, Education, Labor, and Pensions Committee http://bit.ly/11EEmWL
House Oversight and Government Reform Committee http://bit.ly/1L7Qek9
all of Congress http://bit.ly/1a2QiUB
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 11 February 2016 - 01:21 PM
I thought that Novartis had bought Sun or is it just more collusion in our economic systems? Either way, the upper executives make out, the board makes out and the shareholders make out, just as it is intended to work.
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
Advanced Member
Posted 11 February 2016 - 02:16 PM
The fact is, we, the taxpayers, fund the development of drugs to fight cancer:
NIH's FY2016 funding $32 billion ... NIH's funding is awarded through almost 50,000 competitive grants to more than 300,000 researchers at more than 2,500 universities.
Other research funding is from LLS, and various Cancer groups, from the donations they receive.
The rewards go to the heads of the university labs and the pharmaceutical companies who pick up the drugs and see them through to FDA approval.
Had a friend who was assistant blood lab director at one of our most prominent universities. One of her main duties, along with managing the lab on a day-to-day basis, was to write the grant applications to submit to the NIH, and others. She told me of the very large rewards received by the head of the lab when their research enabled BIG PhRMA to capitalize on another new drug. We, the patients, are being gamed in every way imaginable.
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 11 February 2016 - 03:07 PM
I think that expecting Congress to change the situation is not going to work. Too many senators and representatives are getting paid off. Does anyone think that any of the Presidential candidates will or can stop the pharmaceutical companies' price gouging?
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
Advanced Member
Posted 11 February 2016 - 03:24 PM
I think that expecting Congress to change the situation is not going to work. Too many senators and representatives are getting paid off. Does anyone think that any of the Presidential candidates will or can stop the pharmaceutical companies' price gouging?
Best chance of change is Bernie Sanders http://www.sanders.s...ed-at-lawmakers
not that I agree with everything he proposes
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 11 February 2016 - 04:38 PM
New Member
Posted 11 February 2016 - 06:28 PM
First, thanks for the price history information, and the links to congressional committes. Bernie Sanders and Rand Paul are both on the Healthcare committee. Send them (and others) a summary of this thread and ask for their help. It is typical of our bureaucratic government that email must be addressed to the individual legislators and not to a group address for the entire committee. Just makes it harder for them to hear from us, and easier to listen to the Pharm lobbyists. My cynical nature tells me that they will not be swayed, but I also can't allow them the excuse that no one brought this to their attention.
Doug
Advanced Member
Posted 11 February 2016 - 07:08 PM
"The FDA gave Sun exclusive rights to sell generic Gleevec for six months. If the FDA approves other drug companies' generic versions, there should be a significant drop in the cost."
http://www.webmd.com...leevec-approved
The pricing will work against Sun Pharmaceutical Industries Ltd. of India. We will remember what they did when they had the chance to do something right. As soon as there is another choice (soon) they will likely regret their strategy. And who would buy the Sun version with that little difference in price, especially since it is not exactly the same? I think Novartis suckered them and is now laughing at them for being so stupid. "Stupid is as stupid does".
Advanced Member
Posted 11 February 2016 - 07:46 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Advanced Member
Posted 11 February 2016 - 09:21 PM
Let's be realistic. Without getting too political, the Republicans control Congress and they will not permit any additional government regulation. The members of Congress that feel this way must be voted out or things will not change, regardless of who gets elected President.
Bernie Sanders chances of getting elected are slim and none, and even if he is, there is no chance of his ideas taking effect without an virtually unprecendented upheaval in Congress.
Advanced Member
Posted 11 February 2016 - 10:03 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Advanced Member
Posted 12 February 2016 - 06:19 AM
Agree with rcase13, both parties are equally corrupt. There are a few good people in office but they are muted by the media and made to look like Communists or Fascists which they are not. I believe Americans are slowly waking up to the fact but the fact is, they don't know what to do about it. There are some movements out there which represent a real change but these ideas are not mainstream and are very rarely (if ever) mentioned in the media (all controlled by the top 1%).
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
Advanced Member
Posted 12 February 2016 - 09:48 AM
TKI refill came today, and I see that the specialty pharmacy opted to send Gleevec again, instead of switching me over to the generic, as they initially indicated. Why? I suspect it's related to the 5% price drop of Gleevec since last month, per my invoice. That apparently puts it in line with the cost of the generic. I also note that I'm still being billed for the max copay under my insurance.
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.
Advanced Member
Posted 12 February 2016 - 10:24 AM
The biggest joke to consumers yet:
Gleevec
$12,146
Generic
$11,839
This is the wholesale costs my insurance has to pay Novartis, the retail is double that. The generic also comes with a $10 co-pay but it only works for 6 months and expires permanently (the Gleevec one does not). I told my pharmacist to keep me on the brand name since there really wasn't any price difference and the co-pay doesn't expire on it.
Totally pathetic.
Hi Everyone,
Just a short note to tell you that I live in Canada and I was diagnosed March 2014, and that I have been taking the generic (IMATINIB) all this time, I don't know what the brand name looks like, and the price in Canada for 84 x 100 mg. pills is $618.58. I only pay $100.00 once a year and every time I pick up a refill I pay $1.89, this is all in Canadian currency, which our dollar has less value than yours. Maybe we pay higher taxes in Canada, I pay 15% in the first $30,000.00 after that the taxes are much higher. I hope this helps.
acl
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
Advanced Member
Posted 12 February 2016 - 11:56 AM
LOL Yeah it helps. It helps me understand how messed up Medical is in the United States.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Advanced Member
Posted 12 February 2016 - 12:33 PM
In both scenarios you pay, however, no one gets rich off of the Canadian system. 
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
Advanced Member
Posted 12 February 2016 - 01:17 PM
I was so afraid of this...got a card from PSI....and I went to get the Gleevec and there was only a $5.00 copay. This may be because Kaiser is a huge healthcare system and probably got a good price.
Go to kp.org to see if there is one near you.
Advanced Member
Posted 12 February 2016 - 07:07 PM
Hi Everyone,
Just a short note to tell you that I live in Canada and I was diagnosed March 2014, and that I have been taking the generic (IMATINIB) all this time, I don't know what the brand name looks like, and the price in Canada for 84 x 100 mg. pills is $618.58. I only pay $100.00 once a year and every time I pick up a refill I pay $1.89, this is all in Canadian currency, which our dollar has less value than yours. Maybe we pay higher taxes in Canada, I pay 15% in the first $30,000.00 after that the taxes are much higher. I hope this helps.
acl
acl, your $7.36 Canadian/100mg in Canada for the Gleevec generic certainly beats the $100 U.S./100mg charged (when I last filled my Rx in late Dec.) here in America.
You have many choices of Gleevec generics in Canada, many costing even less: http://www.pharmacyc...matinib/100 mg/
I'm sure that some Gleevec generics are better than others.
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 Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
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