Re: Future $$$ of Gleevec in the US /Lynn et al

November 7, 2005

I would like to chime in to say this is a really relevant topic for

this list and any other list dedicated to CML.

As you all have noted it is a difficult subject to bring up, but it

does need to be discussed.

It doesn't really matter what country you live in, we are all

connected, not only with this issue but with many others as well.

's post brought up some really good issues about health care

coverage by employers (private insurance) and interestingly, the

issues in the U.S. are very similar here in Canada. As an ex-pat

(American living in Canada) I get to see how it works on both

sides. But even in Canada, a country with a " national " health care

program, coverage from one province to another is quite different. I

have to say though that Quebec has done a good job for Gleevec

patients. Quebec is probably the only province in Canada that covers

the cost of Gleevec (yearly deductible of $800.00), if you are not

enrolled in a private health care plan, regardless of your income.

That is because the Government of Quebec has declared Gleevec

and " essential " drug. This ruling was the result of lobbying by the

medical and regulatory division of Novartis in tandem with the Key

Hem/Oncs in this province. Which underlines the importance of a

professional relationship between the drug companies and key opinion

leaders. There is a cost to this however, we do pay higher taxes and

here in Quebec the provinical government is very involved in health

care issues and does regulate certain things that would/could be

deemed to have a " negative " impact on the overall health of it's

citizens.

A couple of years after being dxed with CML, I lost my employment as

my employers knew that I would switch over to Gleevec and they were

advised by the insurance company that this would cause them to raise

coverage premiums significantly. The breech of trust of my employers

and the insurers was quite troubling to me. Unfortunately this is

something that happens more than we like to think. And yes, by the

way, there was a lawsuit. However, with the excellent health care

coverage we have here in Quebec the compensation wasn't anything near

what it should have been considering how hard it is to find full time

employemnt that would include private coverage again.

The point should be raised however, that government, in the U.S.,

Canada or anywhere, should be more involved in picking up the tab for

drugs like Gleevec because it allows those of us who are still in

the " prime bread winning " stage of our lives to be fully functional,

tax paying citizens. Some of us can remember the pre Gleevec days.

We now have the ability to take this nearly fatal disease and live

nearly normally. Simply put, Gleevec has shifted the costs of

managing this disease out of the health care system and into

private insurers -there are less BMT's for CMLers and all things

considered the quality of life is much much better.

I really do not think Novartis or BMS will lower the cost of their

drugs, no matter how many other competitors come onto the market.

What we need is a total cure, one that lets us get off this drug

sooner rather than later. The discouraging thought is that there

too, the cost of a drug like that will be amortized to cost the same

as if you stayed on Gleevec for 30, or 40 years or whatever.

It is absolutely painful for me to hear of some of the hardships some

patients must go through to get the drug; as if getting diagnosed

with CML wasn't bad enough, the financial management of the disease

becomes a horrifying nightmare for way too many people.

You are right , the biggest issue we need to consider in any

election process is what will happen to health care. Just last week

wasn't there a story in the news about one of the major suppliers to

the car industry going out of business because they could no longer

afford to pay American employees work related benefits. They felt

they could no longer compete with the cheap labor available in other

countries.

But, like pointed out it is all about money. Let's face it none

of us work for free. The more we increase our demands for better

salaries and benefits the more it drives the cost of goods and

services up, it is a viscous circle. It isn't just a problem common

in the drug industry, everybody has their hand out. If you could get

paid more for your job, are you going to refuse it - no you are not

going to do that are you? And what about lawsuits? Not just in the

drug industry, remember the case a few years ago regarding Mcs

and a particularly hot cup of coffee? Mcs spent millions of

dollars because of it. For healthcare in the U.S., lawsuits for

malpractice and cases against drug companies have to be factored into

healthcare costs. We all want to make the most, but pay the least.

I am not talking in defense of the drug companies, this is just

reality.

We " sick " people are in the minorty and as a minority we cannot

change the rules, because the majority (healthy) people are not

willing to pay to improve the situation of the minority. The case in

point is how many of us really worried about all of this before we

got sick? It is this disparity that makes it very hard for our

voices to be heard - but it doesn't mean we should stop talking.

This has been an interesting topic and I hope it continues. And,

just in case you are wondering, while I do work in the healthcare

industry, I do not work for a drug company. I am very concerned

about the rising costs of healthcare and I do worry if my private

insurance will ever run out or what other benefits I may not have

access to because of CML.

Best Regards to everyone,

Cheryl-Anne

>

> Lynn,

>

> A discussion about a national health plan (note that I have not

stated

> my position on it or made it political; rather it's a health policy

> issue) is inevitable when you're talking about health care costs.

And

> you aren't comparing apples to apples when you try to relate drug

prices

> in the US to drug prices in other countries. Different health care

> systems!

August 12, 2009

The thing that scares me is what if I max out my insurance's lifetime maximum $$

and can't get ANY care or coverage. What if I lose my insurance and can't get

any more insurance because I have a pre-existing condition? Not to mention being

unable to afford Gleevec or whatever drugs I am on at that time!!

Having this illness was the thing that finally brought me to the inescapable

conclusion that we must have healthcare reform, and I have worked in healthcare

for 35+ years.

I don't like thinking that my very life depends on my employer's whims about my

health insurance coverage or lack of same, but that is really the truth and it

is frightening. Not to mention, what happens to me if I can't work anymore--what

coverage will I have. That, to me, is why a robust public option is necessary--I

can't afford private insurance coverage, and am not sure they would accept me on

their plan anyway--see pre-existing condition and lifetime maximum coverage

arguments above.

I don't want to step on people's toes, but this issue is to important for us to

ignore. We are in a life or death battle for our health and our health

insurance coverage is a basic part of that battle.

I recently got out of the hospital for Clostridium difficile colitis caused by

antibiotic treatment, and even with employer-provided health insurance, my

copayment/deductible for a week in the hospital amounted to almost $4000.00. I

simply can't afford that! And that was not including the drugs that were

prescribed, one of which was even more expensive than Gleevec (vancomycin oral

capsules), if you can believe it.

That's my 2 cents worth!

Vicki Schepman

> >

> > Lynn,

> >

> > A discussion about a national health plan (note that I have not

> stated

> > my position on it or made it political; rather it's a health policy

> > issue) is inevitable when you're talking about health care costs.

> And

> > you aren't comparing apples to apples when you try to relate drug

> prices

> > in the US to drug prices in other countries. Different health care

> > systems!

>

August 12, 2009

Hi I have Aetna which has a cap but prescription are no included. I doubt if

health reform will pay for meds I have not heard any mention. 600 Gleevec

dx 05 PCRU

________________________________

From: Schepman <vickistu@...>

Sent: Wednesday, August 12, 2009 12:13:38 AM

Subject: Re: [ ] Future $$$ of Gleevec in the US /Lynn et al

The thing that scares me is what if I max out my insurance's lifetime maximum $$

and can't get ANY care or coverage. What if I lose my insurance and can't get

any more insurance because I have a pre-existing condition? Not to mention being

unable to afford Gleevec or whatever drugs I am on at that time!!

Having this illness was the thing that finally brought me to the inescapable

conclusion that we must have healthcare reform, and I have worked in healthcare

for 35+ years.

I don't like thinking that my very life depends on my employer's whims about my

health insurance coverage or lack of same, but that is really the truth and it

is frightening. Not to mention, what happens to me if I can't work anymore--what

coverage will I have. That, to me, is why a robust public option is necessary--I

can't afford private insurance coverage, and am not sure they would accept me on

their plan anyway--see pre-existing condition and lifetime maximum coverage

arguments above.

I don't want to step on people's toes, but this issue is to important for us to

ignore. We are in a life or death battle for our health and our health insurance

coverage is a basic part of that battle.

I recently got out of the hospital for Clostridium difficile colitis caused by

antibiotic treatment, and even with employer-provided health insurance, my

copayment/deductibl e for a week in the hospital amounted to almost $4000.00. I

simply can't afford that! And that was not including the drugs that were

prescribed, one of which was even more expensive than Gleevec (vancomycin oral

capsules), if you can believe it.

That's my 2 cents worth!

Vicki Schepman

> >

> > Lynn,

> >

> > A discussion about a national health plan (note that I have not

> stated

> > my position on it or made it political; rather it's a health policy

> > issue) is inevitable when you're talking about health care costs.

> And

> > you aren't comparing apples to apples when you try to relate drug

> prices

> > in the US to drug prices in other countries. Different health care

> > systems!

>

August 12, 2009

Again, I find these issues to be clear indicators of much in need the U.S. is

for Health Care/Insurance reform. The insurance companies are beginning to

awaken to the realization that paying outlandish amounts for life saving

medication for the rest of our natural lives is going to cost a whole lot of

money! This is a major reason why a Capitalist/Profit driven health care system

alone will never work!

I am realistic enough to know that a completely non-profit public heath care

system is politically dead on arrival. As a people we have been conditioned to

automatically reject anything that looks like socialism, it might be communist

inspired! However, I believe that it is in the public interest to have an

inclusive health care system which covers everybody. This system could be

mandated to commercial insurers with payment coming from the government for

those who cannot afford coverage. The public coverage could also be managed by a

government agency, my choice because it factors out the profit-cost of providing

health care service.

As a retired church pastor and CPA, I believe that available health care for

everyone is a moral obligation on our community. I believe that the failure of

the commercial sector has been that they are not driven by the obligation to

provide the necessary services to keep people healthy, rather, they are driven

primarily by profit. When you add profit to cost the inescapable conclusion is

that the cost to the nation will be far greater than the cost of providing

services.

To those who fear healthcare rationing, it is already here! Millions of people

are denied health care either because they cannot afford it or because they

already have something wrong with them and the insurance companies will not

accept them for coverage.

W. Bush, et.al., allowed the insurance companies and big pharma to write

the Medicare, Part-D law without Congressional input. Therefore they included a

provision making it " illegal " for Medicare to negotiate a better price for

medications. Thankfully, the proposed reforms will eliminate this absurdity.

I've got a lot more on this subject... but it's beginning to read like a book.

My bad! Please forgive me for running on.

Troxel

August 12, 2009

No , you're not bad, maybe you should write the book?

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

From: richard_troxel <richard.troxel@...>

Subject: [ ] Re: Future $$$ of Gleevec in the US /Lynn et al

Date: Wednesday, August 12, 2009, 2:01 PM

Again, I find these issues to be clear indicators of much in

need the U.S. is for Health Care/Insurance reform. The insurance companies are

beginning to awaken to the realization that paying outlandish amounts for life

saving medication for the rest of our natural lives is going to cost a whole lot

of money! This is a major reason why a Capitalist/Profit driven health care

system alone will never work!