Jump to content


Photo

what about our tki's aren't they just as life saving as the epipen?


  • Please log in to reply
26 replies to this topic

#21 r06ue1

r06ue1

    Advanced Member

  • Members
  • PipPipPip
  • 426 posts
  • LocationEarth, Solar System, Milky Way, Local Group, Virgo Supercluster, Laniakea

Posted 12 September 2016 - 10:33 AM

I think Big Pharma is raising the price or keeping it high because they know the days of CML are coming to an end so they are trying to gouge as much out of the system as possible before it goes.  I do find it interesting how these same companies that are making billions off of the drug are very interested in the possible cures, possibly buying out the patents for those once they do come to fruition.  Will they charge people a million, ten million to be cured to make up for the losses of their druggies?  We can only wait and see.


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


#22 chriskuo

chriskuo

    Advanced Member

  • Members
  • PipPipPip
  • 367 posts

Posted 13 September 2016 - 01:25 AM

Silvertabby,

 

How did you get switched to the generic against your doctor's wishes?

 

You should not worry about who is paying for YOUR drugs.  It reflects a systemic problem (shell game between employers, the government and big pharma).  Although Americans pay more for drugs, particularly specialty drugs, than patients in other countries,

I think you will have a hard time finding Americans who are paying more than $6K/year for their specialty drugs.  That is a lot of money but just 5% or so of the list prices that are being bandied about here.  If somebody is paying more than $4K-$6K/year AND can't afford it, thee are options available to him/her in almost all cases to substantially reduce it.



#23 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 13 September 2016 - 11:08 AM

Silvertabby,

 

How did you get switched to the generic against your doctor's wishes?

 

You should not worry about who is paying for YOUR drugs.  It reflects a systemic problem (shell game between employers, the government and big pharma).  Although Americans pay more for drugs, particularly specialty drugs, than patients in other countries,

I think you will have a hard time finding Americans who are paying more than $6K/year for their specialty drugs.  That is a lot of money but just 5% or so of the list prices that are being bandied about here.  If somebody is paying more than $4K-$6K/year AND can't afford it, thee are options available to him/her in almost all cases to substantially reduce it.

chriskuo, your argument is absolutely ridiculous.  Increased drug prices come at the expense of the consumer, be it in higher insurance costs, higher taxes, or stagnated wages, if the employer is paying for the increase.  There is no tooth fairy paying for increased drug costs.  One of the major economic problems in our country, and globally, for that matter, is that too much money is flowing into the pockets of the wealthy.  Exorbitant drug prices are just another example of this inequity; most of the profits go to the very wealthy.  We should all be very concerned about skyrocketing drug costs because we are all paying the price for them in one way, or another.  


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

chriskuo

    Advanced Member

  • Members
  • PipPipPip
  • 367 posts

Posted 14 September 2016 - 01:14 AM

You may have mistaken the thrust of my comment.  Patients directly pay a small percentage of the list price of specialty drugs.  It can be a hassle, but if somebody can't afford them, they are social agencies and other avenues for support.

 

The reason for the very high drug prices in the US is primarily related to the historical fact from WWII that health insurance is traditionally provided by the employer, plus the individualist/conservative strain in American politics compared to the other developed countries.

 

You have to agree with me that patients pay a very small percentage of the drug price.  I agree with you that the main burden is shared by employers and taxpayers.  To some extent, employers may pass the burden onto customers and employees (in lower wages).  But the direct cost to patients is the smallest part of the total.  It is not pretty, but for the most part, patients in the US get the specialty drugs they need.

 

Another way to look at it:  If the list price of the drugs come down, how much of the decrease in dollars do you think will flow to the patient?



#25 r06ue1

r06ue1

    Advanced Member

  • Members
  • PipPipPip
  • 426 posts
  • LocationEarth, Solar System, Milky Way, Local Group, Virgo Supercluster, Laniakea

Posted 14 September 2016 - 05:09 AM

 

 

I agree with you that the main burden is shared by employers and taxpayers.

 

And add to that list everyone that has private insurance.  Everyone that pays taxes and has private insurance is getting the double whammy, the only people that are excluded are the poor who can't afford to pay taxes (or pay very little) and cannot afford private health insurance.


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 Silvertabby

Silvertabby

    Member

  • Members
  • PipPip
  • 24 posts
  • LocationAlaska

Posted 14 September 2016 - 08:32 PM

Chriskuo,

The middle of June my insurance company notified me that as of July 1 they would only cover the generic. I began taking the generic the beginning of August and told my Dr last week - the first time I had seen her since receiving the letter from the insurance company.
Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017

God is in control. I will trust Him.

#27 chriskuo

chriskuo

    Advanced Member

  • Members
  • PipPipPip
  • 367 posts

Posted 15 September 2016 - 02:07 AM

Silvertabby,

 

Thanks for the explanation.  The insurance company must be getting a very healthy discount/kickback from the generic manufacturer because the difference in list prices has been small so far.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users