Re: Pharma meds out of pocket costs

March 21, 2010

Hi Guy and Ralph,

I'm , another old guy! Old enough to be on Medicare anyway, LOL!

I've used PSI to help cover the share-of-cost/co-pay for my Gleevec for

several years, they have been great to help and I love them. I was not happy

though at the situation set up by Part D when it was implemented. I was

especially unhappy at being forced to go " begging " for help. The " doughnut

hole " would have put my wife and I on the streets, more accurately probably

a really shabby appartment with drug adicts for neighbors. Worse yet, I

might have to move in with my brother-in-law... just joking, he is a great

guy.

Some of the Part-D plans have now shuffled Gleevec and the other CML meds

into " Tier-4 " with a 25 to 33.33 percent co-pay for the entire year. In

Southern California, one HMO called SCAN does not even apply any of that to

the doughnut hole or the catastrophic coverage! If your plan is anything

like what I am describing, you seriously need to find a better plan! Check

out " medicare.gov " and use their online tool to find the best plan for you,

it will help out PSI too... their funds are not unlimited. I understand that

PSI may also be able to give you advice about the best Part-D coverage.

In case anyone cares... I'm still on record as Supporting the Healthcare

Reform legislation which may get passed today by the House. Yes, I know it

is not perfect and it does not include some things I wanted to see... but

the status quo is (my opinion) completely unacceptable! Like any new ship,

it needs to be put into the water for a shake down cruise and then modified

as needed.

Troxel

dx 2/2003

On Sun, Mar 21, 2010 at 7:38 AM, bvision49 <bvision49@...> wrote:

>

> Hi Guy,

>

> As another guy rapidly approaching the situation your facing, I called

> Novartis last week regarding how I can possibly afford meds during

> retirement. I'm from the U.S., live in New Jersey, and have been taking

> Tasigna of over a year now. I'm employed and my insurance company lays out

> over $7k a month for this one prescription!

>

> Medicare Part D looks to cost around $850 a month for this one script. I

> was lead to believe from my conversation with Novartis PAP that almost all

> applicants on limited retirement income would pay no more than $300 a month

> if enrolled in their program rather than going the Medicare route. Is this

> changing? I'm very interested in this topic, it is causing a lot of anxiety

> as my wife and I attempt to plan retirement.

>

> Thanks, and god bless.

>

> Ralph Bruno

>

> >

> > Hello Fellow CML Sufferers,

> >

> > Let me introduce myself - Guy, an old guy. I have been treated with

> gleevec since 2005 when I was first diagnosed. Lots of problems at first but

> my body seemed to get used to the side effects. I would like to say to all

> those with rashes and itching that cortisone did no good at all for me. At

> one time it was feared I was allergic to gleevec. A friend advised me to ask

> my onc. if I could take atarax (an anti-histamine) and zantac (acid reducer

> - using it for itching is evidently well-known even though it is not the

> primary purpose.) This combination worked wonders for me and you can even

> buy zantac over-the-counter. A friend told me that atarax is even used on

> children. Please don't take this without asking your doc, I'm just telling

> you how I got rid of my rash and itching.

> >

> > One thing I don't see addressed much by the group is how you get help

> with the price of gleevec. I take 90 tablets a month and up to now Novartis

> has provided them. They have given me notice that they have a change of

> policy and they are going to discontinue providing them to me. I have

> applied to PSI and am anxiously waiting. I do have supplementary medicare

> ins. but I will have to pay 33% of the retail price. I just wondered if you

> have any suggestions.

> >

> > This is a great worry to my wife and to me.

> >

> > I have been reading your mail and am struck by the great kindness you

> show to each other. I don't know about any rules you have to join your

> group. Please let me know. I love Lottie's cheer-me-ups. Her joke about the

> " hearing " has gone to England and France and the little Chinese drummer boy

> will bring joy far and wide.

> >

> > Guy

> >

>

March 21, 2010

You can get a medicare supplement from Social Security that will help pay for

the Gleevac. My husband pays $0 for his medication. Before my husband got his

Medicare he got help from Novartis and they gave him his medicine for free. Let

me know if there's anyway I can help.

ANNETTE L. TRIPKOVICH

________________________________

From: bvision49 <bvision49@...>

Sent: Sun, March 21, 2010 9:38:24 AM

Subject: [ ] Pharma meds out of pocket costs

Hi Guy,

As another guy rapidly approaching the situation your facing, I called Novartis

last week regarding how I can possibly afford meds during retirement. I'm from

the U.S., live in New Jersey, and have been taking Tasigna of over a year now.

I'm employed and my insurance company lays out over $7k a month for this one

prescription!

Medicare Part D looks to cost around $850 a month for this one script. I was

lead to believe from my conversation with Novartis PAP that almost all

applicants on limited retirement income would pay no more than $300 a month if

enrolled in their program rather than going the Medicare route. Is this

changing? I'm very interested in this topic, it is causing a lot of anxiety as

my wife and I attempt to plan retirement.

Thanks, and god bless.

Ralph Bruno

>

> Hello Fellow CML Sufferers,

>

> Let me introduce myself - Guy, an old guy. I have been treated with gleevec

since 2005 when I was first diagnosed. Lots of problems at first but my body

seemed to get used to the side effects. I would like to say to all those with

rashes and itching that cortisone did no good at all for me. At one time it was

feared I was allergic to gleevec. A friend advised me to ask my onc. if I could

take atarax (an anti-histamine) and zantac (acid reducer - using it for itching

is evidently well-known even though it is not the primary purpose.) This

combination worked wonders for me and you can even buy zantac over-the-counter.

A friend told me that atarax is even used on children. Please don't take this

without asking your doc, I'm just telling you how I got rid of my rash and

itching.

>

> One thing I don't see addressed much by the group is how you get help with the

price of gleevec. I take 90 tablets a month and up to now Novartis has provided

them. They have given me notice that they have a change of policy and they are

going to discontinue providing them to me. I have applied to PSI and am

anxiously waiting. I do have supplementary medicare ins. but I will have to pay

33% of the retail price. I just wondered if you have any suggestions.

>

> This is a great worry to my wife and to me.

>

> I have been reading your mail and am struck by the great kindness you show to

each other. I don't know about any rules you have to join your group. Please

let me know. I love Lottie's cheer-me-ups. Her joke about the " hearing " has

gone to England and France and the little Chinese drummer boy will bring joy far

and wide.

>

> Guy

>

March 21, 2010

Hi ,

My research shows that most of the part D plans looks about the same for

Tasigna. Somewhere in the range of $9600 total out of packet after premiums,

deductables and the donut hole. There's your $800-$850 per month.

I'm interested in what funding is available for making up the difference or if

Novartis PAP can be of some assistance. This is an unfair burden to be placed

on the sick and elderly who are trying to get by on their 201k plans, which used

to be 401k's.

And I am not making a political statement here, just an observation. The system

needs fixing but is not broken, as far as I can tell. We have a number of new,

innovative and accessable drugs that make our complaining possible. I don't

know enough about it to say if this new bill will be a blessing or a curse. But

God help us all if the government helps 'fix' the system too much.

Be well,

>...rb

> > >

> > > Hello Fellow CML Sufferers,

> > >

> > > Let me introduce myself - Guy, an old guy. I have been treated with

> > gleevec since 2005 when I was first diagnosed. Lots of problems at first but

> > my body seemed to get used to the side effects. I would like to say to all

> > those with rashes and itching that cortisone did no good at all for me. At

> > one time it was feared I was allergic to gleevec. A friend advised me to ask

> > my onc. if I could take atarax (an anti-histamine) and zantac (acid reducer

> > - using it for itching is evidently well-known even though it is not the

> > primary purpose.) This combination worked wonders for me and you can even

> > buy zantac over-the-counter. A friend told me that atarax is even used on

> > children. Please don't take this without asking your doc, I'm just telling

> > you how I got rid of my rash and itching.

> > >

> > > One thing I don't see addressed much by the group is how you get help

> > with the price of gleevec. I take 90 tablets a month and up to now Novartis

> > has provided them. They have given me notice that they have a change of

> > policy and they are going to discontinue providing them to me. I have

> > applied to PSI and am anxiously waiting. I do have supplementary medicare

> > ins. but I will have to pay 33% of the retail price. I just wondered if you

> > have any suggestions.

> > >

> > > This is a great worry to my wife and to me.

> > >

> > > I have been reading your mail and am struck by the great kindness you

> > show to each other. I don't know about any rules you have to join your

> > group. Please let me know. I love Lottie's cheer-me-ups. Her joke about the

> > " hearing " has gone to England and France and the little Chinese drummer boy

> > will bring joy far and wide.

> > >

> > > Guy

> > >

> >

>

March 21, 2010

Hi Ralph,

It has been my observation that the system is broken. I personally know

several people who were immediatly dropped from their insurance as soon as

they became chronically ill... to make matters worse then were then billed

for the hospitalization which occurred before they were dropped.

My wife had polio when she was five, now she cannot get coverage for her

" post polio syndrome " , now called polio sequelae, AND she has to pay an

elevated premium even though they won't cover her needs. We pay almost

$900/month just for her alone. To me, it is just wrong that the health care

industry in American is a for-profit industry. We stand alone in the

developed world... and in every measurable or quantifiable standard the good

ole USA comes in close to the bottom in health care among major countries.

I'll stop chasing this rabbit now, I understand that most people have their

minds made up and will not change no matter how much I protest... P.S. I do

respect you, your opinion and your right to express it... that is the

American way.

On Sun, Mar 21, 2010 at 12:02 PM, bvision49 <bvision49@...> wrote:

>

> Hi ,

>

> My research shows that most of the part D plans looks about the same for

> Tasigna. Somewhere in the range of $9600 total out of packet after premiums,

> deductables and the donut hole. There's your $800-$850 per month.

>

> I'm interested in what funding is available for making up the difference or

> if Novartis PAP can be of some assistance. This is an unfair burden to be

> placed on the sick and elderly who are trying to get by on their 201k plans,

> which used to be 401k's.

>

> And I am not making a political statement here, just an observation. The

> system needs fixing but is not broken, as far as I can tell. We have a

> number of new, innovative and accessable drugs that make our complaining

> possible. I don't know enough about it to say if this new bill will be a

> blessing or a curse. But God help us all if the government helps 'fix' the

> system too much.

>

> Be well,

>

> .

>

March 21, 2010

Well, , I , for one, am with you on health care.Â What they may pass may

not be perfect, but what we have is certainly not perfect either.Â If it were a

simple thing to do, it would have been done years ago. But just sitting on our

butts and saying it's bad is not quite good enough.Â Â I wonder about a lot of

things with a new health care program, as I have been in 6 trials in 10 years.Â

I wonder about how the government and pharms will work together, and will we

still be able to be in a trial if necessary.Â Social Security went down,

medicare went up, not fair !!Â Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

>

> Hi ,

>

> My research shows that most of the part D plans looks about the same for

> Tasigna. Somewhere in the range of $9600 total out of packet after premiums,

> deductables and the donut hole. There's your $800-$850 per month.

>

> I'm interested in what funding is available for making up the difference or

> if Novartis PAP can be of some assistance. This is an unfair burden to be

> placed on the sick and elderly who are trying to get by on their 201k plans,

> which used to be 401k's.

>

> And I am not making a political statement here, just an observation. The

> system needs fixing but is not broken, as far as I can tell. We have a

> number of new, innovative and accessable drugs that make our complaining

> possible. I don't know enough about it to say if this new bill will be a

> blessing or a curse. But God help us all if the government helps 'fix' the

> system too much.

>

> Be well,

>

> .

>

March 21, 2010

Hi ,

I too respect your opinion. No matter what I personally think, I have the

confidence that the American people will eventually get this right. Most of us

want the same things, I guess it's the process on how we do it that most people

differ on.

Warmest Regards,

Don

>

> >

> > Hi ,

> >

> > My research shows that most of the part D plans looks about the same for

> > Tasigna. Somewhere in the range of $9600 total out of packet after premiums,

> > deductables and the donut hole. There's your $800-$850 per month.

> >

> > I'm interested in what funding is available for making up the difference or

> > if Novartis PAP can be of some assistance. This is an unfair burden to be

> > placed on the sick and elderly who are trying to get by on their 201k plans,

> > which used to be 401k's.

> >

> > And I am not making a political statement here, just an observation. The

> > system needs fixing but is not broken, as far as I can tell. We have a

> > number of new, innovative and accessable drugs that make our complaining

> > possible. I don't know enough about it to say if this new bill will be a

> > blessing or a curse. But God help us all if the government helps 'fix' the

> > system too much.

> >

> > Be well,

> >

> > .

> >

>

March 21, 2010

Sorry to bring up a sore subject, it was not my intention to make a political

statement. It's hard to keep the subjects isolated, I guess. I too have seen

abuses and injustices in the U.S. healthcare system, I think I was pointing one

out. I just hope the baby doesn't get thrown out with the bathwater.

In the meantime, any feedback out there on resources for funding us oldtimers is

appreciated. Especially changes to Novartis PAP, as noted earlier.

Thanks,

>...rb

>

> >

> > Hi ,

> >

> > My research shows that most of the part D plans looks about the same for

> > Tasigna. Somewhere in the range of $9600 total out of packet after premiums,

> > deductables and the donut hole. There's your $800-$850 per month.

> >

> > I'm interested in what funding is available for making up the difference or

> > if Novartis PAP can be of some assistance. This is an unfair burden to be

> > placed on the sick and elderly who are trying to get by on their 201k plans,

> > which used to be 401k's.

> >

> > And I am not making a political statement here, just an observation. The

> > system needs fixing but is not broken, as far as I can tell. We have a

> > number of new, innovative and accessable drugs that make our complaining

> > possible. I don't know enough about it to say if this new bill will be a

> > blessing or a curse. But God help us all if the government helps 'fix' the

> > system too much.

> >

> > Be well,

> >

> > .

> >

>

March 22, 2010

And I'm sorry I jumped on with both feet... guess with today's events in the

House of Representatives I was as worked up as a college basketball fan...

speaking of which my UNM Lobos fell to an inspired Washington Huskies team

yesterday. UNM is great but the just got out played... my hats off to the

Huskies.

On Sun, Mar 21, 2010 at 3:31 PM, bvision49 <bvision49@...> wrote:

>

> Sorry to bring up a sore subject, it was not my intention to make a

> political statement. It's hard to keep the subjects isolated, I guess. I too

> have seen abuses and injustices in the U.S. healthcare system, I think I was

> pointing one out. I just hope the baby doesn't get thrown out with the

> bathwater.

>

> In the meantime, any feedback out there on resources for funding us

> oldtimers is appreciated. Especially changes to Novartis PAP, as noted

> earlier.

>

> Thanks,

>

> >...rb

>

> >

> > >

> > > Hi ,

> > >

> > > My research shows that most of the part D plans looks about the same

> for

> > > Tasigna. Somewhere in the range of $9600 total out of packet after

> premiums,

> > > deductables and the donut hole. There's your $800-$850 per month.

> > >

> > > I'm interested in what funding is available for making up the

> difference or

> > > if Novartis PAP can be of some assistance. This is an unfair burden to

> be

> > > placed on the sick and elderly who are trying to get by on their 201k

> plans,

> > > which used to be 401k's.

> > >

> > > And I am not making a political statement here, just an observation.

> The

> > > system needs fixing but is not broken, as far as I can tell. We have a

> > > number of new, innovative and accessable drugs that make our

> complaining

> > > possible. I don't know enough about it to say if this new bill will be

> a

> > > blessing or a curse. But God help us all if the government helps 'fix'

> the

> > > system too much.

> > >

> > > Be well,

> > >

> > > .

> > >

> >

March 22, 2010

Hi , no need to apologize. I know you speak from your heart, as we all

do -- it's a very passionate issue that is going to change the future of this

country. Wouldn't it be a boring world if we all agreed on everything.

Warmest regards,

Don

> > >

> > > >

> > > > Hi ,

> > > >

> > > > My research shows that most of the part D plans looks about the same

> > for

> > > > Tasigna. Somewhere in the range of $9600 total out of packet after

> > premiums,

> > > > deductables and the donut hole. There's your $800-$850 per month.

> > > >

> > > > I'm interested in what funding is available for making up the

> > difference or

> > > > if Novartis PAP can be of some assistance. This is an unfair burden to

> > be

> > > > placed on the sick and elderly who are trying to get by on their 201k

> > plans,

> > > > which used to be 401k's.

> > > >

> > > > And I am not making a political statement here, just an observation.

> > The

> > > > system needs fixing but is not broken, as far as I can tell. We have a

> > > > number of new, innovative and accessable drugs that make our

> > complaining

> > > > possible. I don't know enough about it to say if this new bill will be

> > a

> > > > blessing or a curse. But God help us all if the government helps 'fix'

> > the

> > > > system too much.

> > > >

> > > > Be well,

> > > >

> > > > .

> > > >

> > >

March 22, 2010

Yippee---Guy--the healthcare legislation passed today! I don't know what it

will mean or when it will cover you--but it has to be better than how things are

now! 31 million Americans will now have government help making their insurance

premiums if they need it, they will not be able to be thrown out of their health

insurance plans if they get sick, and there will be no lifetime maximums or

yearly financial limits on care! I was absolutely terrified during the year when

I was without insurance and I could not afford Cobra--I was afraid I would die

and not be able to afford my Gleevec. So, I am absolutely on cloud 9 that this

legislation finally passed My daughter and her boyfriend both work full time

and are not offered insurance, and our state plan is not accepting new enrollees

right now--so she will finally have access to insurance that she can afford.

America has finally joined the rest of the industrialized nations in providing

for its citizens. It's about time is all I can say! YAY...!

Vicki