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Gerald Lively
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« Reply #325 on: May 29, 2013, 06:15:28 PM »

A while back the news on the sequester was about chemotherapy patients who were denied treatment because Medicare no longer covered the cost of the drugs.  Of course, I talked to my Oncologist about this and I will be okay even though it turns out that the very drug that concerned some doctors in the mid-west is the drug I’m taking.  The cost is several thousand bucks per bag.  That troubles me.

Besides not getting any green stamps I pondered the question of the price.  I hear stories about the profit margin on prescription drugs and if true, wouldn’t it be prudent to make this drug available rather than turning patients away.  This isn’t aspirin, this is a cancer treatment.  Are we that hardcore capitalistic?  Or, how about a little more socialism? 

I suspect these patients are getting what they need, but I don’t know that.  I prefer to think America is compassionate enough to do the job and shouts from the crowd to “Let ‘em die!” was just an individual’s point of view.

Just thinking again.

gl



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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


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« Reply #326 on: May 30, 2013, 12:32:08 AM »

A while back the news on the sequester was about chemotherapy patients who were denied treatment because Medicare no longer covered the cost of the drugs.  Of course, I talked to my Oncologist about this and I will be okay even though it turns out that the very drug that concerned some doctors in the mid-west is the drug I’m taking.  The cost is several thousand bucks per bag.  That troubles me.

Besides not getting any green stamps I pondered the question of the price.  I hear stories about the profit margin on prescription drugs and if true, wouldn’t it be prudent to make this drug available rather than turning patients away.  This isn’t aspirin, this is a cancer treatment.  Are we that hardcore capitalistic?  Or, how about a little more socialism? 

I suspect these patients are getting what they need, but I don’t know that.  I prefer to think America is compassionate enough to do the job and shouts from the crowd to “Let ‘em die!” was just an individual’s point of view.

Just thinking again.

gl

Question, is that drug available to NHS patients? They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.

P.S. Some "teabaggers" shoot back Gerald.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
cariad
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« Reply #327 on: May 30, 2013, 03:09:31 AM »

Question, is that drug available to NHS patients? They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.
Where are you getting this information? This is really misleading. You cannot judge the NHS using American dollars and American healthcare costs! What the US prices at thousands of dollars costs less than a tenth of that here. In my opinion, based on my experience, much of the NHS cost-saving comes from not jumping to intervene and potentially buy themselves more problems than they solve. Two examples: they have much stricter criteria for prescribing antibiotics and they don't vaccinate for every little childhood illness.

Additionally, cancer drugs are treated differently, per Wikipedia and the NHS itself.

Wikipedia:
Quote
However, in November 2008 Alan Johnson, the then Secretary of State, announced that for end-of-life cancer drugs the threshold could be increased above £30,000. [17]

The first drug to go through the new process was Lenalidomide. And its ICER was £43,800.
http://en.wikipedia.org/wiki/National_Institute_for_Health_and_Care_Excellence

This article also goes on to explain that those who cannot get certain drugs paid for have two choices: pay out of pocket or use private insurance if they have it, exactly the same choices as the US.

Explanation of the NHS Cancer Drugs Fund:
Quote
The CDF provides an additional £200m each year to enable patients to access drugs that are not routinely funded by the NHS.
http://www.england.nhs.uk/ourwork/cdf/

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« Reply #328 on: May 30, 2013, 05:12:46 AM »

Cariad, nice information, but I didn't make a statement, I asked a question that is still relevant since as your sources state, many cancer drugs are not routinely funded and the special fund you are talking about ends in 2014. So, just a question is all I asked and it is still a good question if Gerald feels like discussing the specific drug. For a drug that Gerald states is several thousand dollars a bag, I suspect it is probably not available in the UK, but that cannot be answered without knowing exactly the medicine in question.

If Gerald does not wish to reveal that information, then the question will remain unanswered.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
cariad
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« Reply #329 on: May 30, 2013, 06:21:20 AM »

Cariad, nice information, but I didn't make a statement,
These certainly look like statements to me:
They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.
« Last Edit: May 30, 2013, 06:22:24 AM by cariad » Logged

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« Reply #330 on: May 30, 2013, 06:48:39 AM »

Cariad, nice information, but I didn't make a statement,
These certainly look like statements to me:
They have a $35,000 a QALY per year limitation on treatment or something ridiculously low like that. Socialism can bite the health care dollar just as quickly as the greedy capitalists as well.

Cariad, interesting how you avoided the start of my post:

Question, is that drug available to NHS patients?

In any case, if Gerald wishes to answer so be it, otherwise my question remains and yes, it is still a question.

Have a great day. I doubt arguing over this innocuous and reasonable question will solve the worlds problems so probably not worth bantering about it any further unless Gerald wishes to chime in.

Take care,
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
cariad
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What's past is prologue

« Reply #331 on: May 30, 2013, 07:21:46 AM »

Cariad, interesting how you avoided the start of my post:

Question, is that drug available to NHS patients?
I didn't avoid it, I never said you didn't ask a question. You, however, directly claimed that you didn't make a statement. Clearly that is patently false. You made value-judgement laden statements about the NHS, which I said were misleading and I stand by that statement. That doesn't qualify as 'interesting' to me. I assumed that you didn't need to be talked through all of this. Guess I was wrong.

I doubt arguing over this innocuous and reasonable question will solve the worlds problems so probably not worth bantering about it any further unless Gerald wishes to chime in.

Take care,
Didn't realise your goal in these discussions was to solve the world's problems. It isn't my goal. My goal is to defend the healthcare system of my adopted country, my husband's homeland, and my children's citizenship against inaccurate or misleading statements. If it's not worth it to you to continue discussing it, then you know perfectly well you can just stop replying. Somehow I suspect you will continue, all the while saying what a waste of time it is for you to do so.

And I fail to see how something only being funded until 2014 in anyway refutes what I wrote. Like many government programs, they fund for set periods of time, then re-evaluate. I would wager that that program is here to stay.
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Gerald Lively
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« Reply #332 on: May 30, 2013, 08:11:25 AM »

RETUXIN.  My wife says that is the chemo drug I take.
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


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« Reply #333 on: May 30, 2013, 09:03:24 AM »

Rituximab is routinely available through the NHS.
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Gerald Lively
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« Reply #334 on: May 30, 2013, 11:23:19 AM »

"So I just got the insurance info on the charges for my last Rituxan infusions. One was done at the onc office and the complete procedure (including the Rituxan, saline, Benedryl, administration, supplies) for 1 R-maintenance infusion was $5,998. The bill for the same exact procedure from the hospital was $19,162 (that is for 1 R-maintenance infusion, yes ONE.) My old onc, 1 year ago, charged $8,500."

The preceding was written by another Rituxan patient.

I have to admit that I haven't dug deeply into this Rituxan business because I tolerate this drug very well and it does the job.  I also realize that this is a dialysis discussion group and I am not trying to intrude with my question on cancer treatment.

I here talk among the nurses that sounds like Rituxan is ordered just prior to treatment.  And, what is NHS?

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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
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« Reply #335 on: May 30, 2013, 11:31:56 AM »

NHS= National Health Service.

You know, the government healthcare program in the socialist hellscape Britain, where I now live.
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Gerald Lively
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« Reply #336 on: June 07, 2013, 03:33:50 PM »

Here is the latest:  new doctor says its pulmonary embolism in the lungs and legs.  Everyone but me seems to be in a panic.
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
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« Reply #337 on: June 07, 2013, 04:16:57 PM »

Gerald, it is the National Health Service, the British health care system, alluded to because of references to social healthcare.  Personally, I think the NHS does a pretty good job, and the transplant doctors def. seemed more knowledgeable than the charlatans I entrusted my care to over here.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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« Reply #338 on: June 07, 2013, 10:34:39 PM »

Bloody hell!
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« Reply #339 on: June 08, 2013, 10:01:35 AM »

Bloody hell!

I agree with Galvo, Gerald. I would be in a bit of a panic myself. I hope this is just a blip.

 :cuddle;
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
Gerald Lively
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« Reply #340 on: June 08, 2013, 11:51:12 AM »

It is an interesting world I live in.  Way back when a doctor first said I had cancer, he was physically shaken.  My only reaction was to ask, “What do I do next?”

The cancer conference gets repeated three more times. One doctor made a long speech filled with what I call, “buffer comments” before actually telling me I had the cancer crud.  I should have given him two aspirins and told him to call first thing in the morning.

I am aware of what pulmonary embolism is and I am also aware of its sudden death characteristic.  Even though the doctor told me over the phone late Friday, I could feel his anxiety.  I am his newest patient and he is just now setting up his practice and I may be the first person he has told what amounts to “bad luck”.  My reaction held no concern except for the revelation that I will need two shots per day, and since we live so far out of town, my wife will administer the injection.  Now, that is scary. The survival rate for my class of PE is 63%.



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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
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« Reply #341 on: June 08, 2013, 12:38:10 PM »

It is an interesting world I live in.  Way back when a doctor first said I had cancer, he was physically shaken.  My only reaction was to ask, “What do I do next?”

The cancer conference gets repeated three more times. One doctor made a long speech filled with what I call, “buffer comments” before actually telling me I had the cancer crud.  I should have given him two aspirins and told him to call first thing in the morning.

I am aware of what pulmonary embolism is and I am also aware of its sudden death characteristic.  Even though the doctor told me over the phone late Friday, I could feel his anxiety.  I am his newest patient and he is just now setting up his practice and I may be the first person he has told what amounts to “bad luck”.  My reaction held no concern except for the revelation that I will need two shots per day, and since we live so far out of town, my wife will administer the injection.  Now, that is scary. The survival rate for my class of PE is 63%.

The Lovenox works well for this Gerald, but you will get some nice bruising in your abdomen from this. Are they putting you on coumadin as well? That is the usual practice. And yes, you don't want to mess with blood clots, I understand well the anxiety on your doctor's part. Fortunately, you are in the "lucky" group of folks with PE that actually make it to the hospital and in addition is diagnosed properly.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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us and fam easter 2013

« Reply #342 on: June 08, 2013, 02:37:06 PM »

I can only say it makes me feel not so good...  I want to respond better, dont want to 'not' respond, but dont know how to respond another way.  You do better with these things GL than the rest of us.  Heck, i dont like how it makes 'me' feel to hear this, but have faith that   You have beat the rest of the crud you've been delt, so by rights, you will beat this as well.  DArn you Gerald..
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Gerald Lively
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« Reply #343 on: June 08, 2013, 04:37:17 PM »

I came to “I Hate Dialysis” thinking that I had enough experience with dialysis and other “heavy” health problems, to make fun of it all, get away with ignoring it, and brighten a few faces in the process by doing my ridiculous funny stuff.  I always liked approval by smile because it helped me, and being a Liberal, it helped others too.  This time I can use a little support as I fight off a minor case of anxiety.

This time the doctor’s call penetrated my facade. 

The doctor I just dumped misdiagnosed what turned out to be cancer after he called it constipation.  Not even close.  After ten months of coughing, spitting up and syncope (I just fainted ten minutes ago), and countless pills prescribed under the advice of “try this and see if it works”, I found a new doctor fresh from medical school who said from the beginning – Pulmonary Embolism. From somewhere deep inside I was getting ready to give this doctor a gold star for getting it right.  Yes, my intuitive-self knew he was right on the money.

The odds are two to one in my favor, and having survived ten months of this, I can beat this too - - okay, that’s what I’m telling myself.


gl
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
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« Reply #344 on: June 08, 2013, 04:51:16 PM »

Hang in there, Gerald!  You sound as though you have the constitution of an ox - may it stay that way.       :grouphug;
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« Reply #345 on: June 08, 2013, 05:51:02 PM »

I found a new doctor fresh from medical school who said from the beginning – Pulmonary Embolism.
So what's his plan?  A bit of heparin or warfarin?
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #346 on: June 08, 2013, 07:02:28 PM »

Gerald , I just wanted you to know I am sending you good wishes and to let you know you always provide me with much needed chuckles and smiles - so your plan is working ! Laurie has just finished six months treatment with coudamin for PE . When receiving news that leaves the doc visually shaken our plan is put the information in the " I will think about it later " basket and go about business as usual .
I trust your humour and courage will see you through this latest disaster .
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« Reply #347 on: June 08, 2013, 08:49:14 PM »

Hang in there. The odds are never really the odds -- just being willing to face them changes them (for the better!)

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Gerald Lively
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« Reply #348 on: June 08, 2013, 09:26:54 PM »

Warfarin is what I'm getting.
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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


Human hopes and human creeds
have their roots in human needs.

                          Eugene Fitch Ware
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« Reply #349 on: June 09, 2013, 02:43:27 AM »

our plan is put the information in the " I will think about it later " basket and go about business as usual .
That's exactly what Gregory does also.  I think sometimes he overuses this tactic really, but it does get him through things like transplant failure.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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