Advanced Member
Posted 06 October 2014 - 06:13 PM
Hi, all,
A friend thought of me last night when he saw 60 minutes and passed this link on to me. It's nothing we don't already know but maybe this will get some necessary conversations started, beginning with our congress men and women.
http://www.forbes.co...artner=yahootix
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>
Advanced Member
Posted 06 October 2014 - 06:58 PM
Thanks Pat,
60 Minutes on Facebook .. scroll down to the article ... 254 comments
https://www.facebook.com/60minutes
Here's the 60 Minutes Video http://www.cbsnews.c...f-cancer-drugs/
EZ Contact Congress http://bit.ly/1a2QiUB
Lobbying Spending Database http://bit.ly/Y6WMyg .... included in: Lobbyists http://bit.ly/kjcTzs
BIG PhRMA http://bit.ly/msN6D4
Payments to doctors by pharmaceutical companies http://binged.it/1BHQCB6
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 06 October 2014 - 08:05 PM
I think I remember reading or hearing that Gleevec cost 2-3 billion to develop and the pay back is long past. Yet, they continue to raise the price of the drug. That can only be greed!
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>
Advanced Member
Posted 06 October 2014 - 08:29 PM
I think I remember reading or hearing that Gleevec cost 2-3 billion to develop and the pay back is long past. Yet, they continue to raise the price of the drug. That can only be greed!
Found this: R&D costs for Gleevec http://www.keionline.org/node/1697
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 07 October 2014 - 12:00 AM
Since most drug development is not successful, the drug companies try to recover many times the development cost of the successful drugs. Gleevec has been tremendously successful and they are trying to maximize profits and shift people to their Tasigna before Gleevec goes generic.
Advanced Member
Posted 07 October 2014 - 09:59 AM
Pat, glad you brought this topic to our attention. Thanks to all for the many links as well.
I saw the episode on Sunday evening and was surprised that they did not mention
Novartis settlement with Sun Pharma (India) not to sell generic Gleevec to U.S. patients
when the patent expires July 2015. They were allowed 7 more months, Feb 2016 until
it can be sold to us in the U.S.
When I told my onc about this, he was not aware. Once again anti-trust laws fail us.
Hope all is well.
Simone
Advanced Member
Posted 07 October 2014 - 03:54 PM
generic Gleevec for U.S. patients Feb 2016
that gives Novartis added time for another price increase, or two
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 07 October 2014 - 05:35 PM
My husband and I watched 60 minutes, and its mind boggling as to all that is going on with these drug companies. My Gleevec has gone up, but still affordable Thank God. My concern is when my husband and I are both on Medicare. I am on Medicare now, but he is not. I get my drugs through his insurance plan from work. I did not pick-up Part D of my Medicare.
I learned something new today. I thought Medicare was my Primary Insurance, and my Aetna was secondary. Because my husband works for a large corporation with more than 25 employees I had to make Aetna Primary.
Just in case anyone is coming up with a similar situation I thought I would share that.
Advanced Member
Posted 08 October 2014 - 07:02 AM
To add to the conversation, here is an interesting article in the WSJ that takes a deeper dive into "financial toxicity", which was a term used during the 60 Minutes piece:
http://blogs.wsj.com...er-drug-prices/
This particular statement puts a lens on the role that insurance companies are playing, as I've felt this situation play out with my company's insurance carrier, which clearly has been painful for me, the patient:
"This involves paying a tiered percentage of drug costs instead of a flat co-payment. This approach can cost patients thousands of dollars out of pocket, limit access to medicines and 'injects' a third party into the relationship between physicians and patients."
This is real and a concrete part of the issue ...
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Gleevec 400mg
Advanced Member
Posted 08 October 2014 - 10:18 AM
Buzzm1
That was a very enlightening article on the costs of the development of Gleevec. I had forgotten that the majority of the work had already been done by Dr. Druker, et al. Thanks for posting!
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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