Re: Monthly, our of pocket, expenses associated with CML care - SURVEY

[Guest guest]

Hi Greg,

I'm assuming that you are interested in USA patients only. Are you planning

on helping patients financially outside the US?

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

gregscmlhope

Sent: May 11, 2010 10:58 AM

Subject: [ ] Monthly, our of pocket, expenses associated with CML care -

SURVEY

Hello everyone,

We need your input and want to know how much you pay in out of pocket

expenses per month for your CML care.

Would you take a few moments to participate in a very brief survey? It is

completely anonymous and requires no identifying information.

Here's the link: http://www.surveymo <http://www.surveymonkey.com/s/3fsr63c>

nkey.com/s/3fsr63c (copy and paste into your browser)

Your input will help us as we further develop programs and services to help

in our community.

Thank you,

Greg s

The National CML Society (USA)

[Guest guest]

Thanks Zavie for pointing that out! We would be interested in the out of pocket

costs for anyone in our community. Therefore, I am going to update the survey

so that it will allow everyone to input their country. We are trying to

negotiate a discount for drugs here in the states, but gathering the information

and allowing users to specify their country will allow us to share that

information with you guys in Canada, as well as others.

Keep in mind, the survey is totally anonymous and no identifying information,

aside from Country, is collected!

Thanks again!

BTW, I am now skype-able...yippee! Finally a new computer!

>

> Hi Greg,

>

> I'm assuming that you are interested in USA patients only. Are you planning

> on helping patients financially outside the US?

>

> Zavie

>

>

>

> Zavie (age 71)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> 3.7 log reduction Jan/09

> 3.8 log reduction May/09

> 3.8 log reduction Aug/09

> 4.0 log reduction Dec/09

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 613-482-4801

> Cell: 613-282-0204

> ID: zaviem

>

> _____

>

> From: [mailto: ] On Behalf Of

> gregscmlhope

> Sent: May 11, 2010 10:58 AM

>

> Subject: [ ] Monthly, our of pocket, expenses associated with CML care -

> SURVEY

>

>

> Hello everyone,

>

> We need your input and want to know how much you pay in out of pocket

> expenses per month for your CML care.

>

> Would you take a few moments to participate in a very brief survey? It is

> completely anonymous and requires no identifying information.

>

> Here's the link: http://www.surveymo <http://www.surveymonkey.com/s/3fsr63c>

> nkey.com/s/3fsr63c (copy and paste into your browser)

>

> Your input will help us as we further develop programs and services to help

> in our community.

>

> Thank you,

>

> Greg s

> The National CML Society (USA)

>

>

>

>

[Guest guest]

Greg,

Why not join us on the chat tonight and we will discuss it. Say around 10:00

PM.

Even if you negotiated a 30% discount on any of the TKIs it wouldn't help

any of us.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

gregscmlhope

Sent: May 11, 2010 5:42 PM

Subject: Re: [ ] Monthly, our of pocket, expenses associated with CML

care - SURVEY

Thanks Zavie for pointing that out! We would be interested in the out of

pocket costs for anyone in our community. Therefore, I am going to update

the survey so that it will allow everyone to input their country. We are

trying to negotiate a discount for drugs here in the states, but gathering

the information and allowing users to specify their country will allow us to

share that information with you guys in Canada, as well as others.

Keep in mind, the survey is totally anonymous and no identifying

information, aside from Country, is collected!

Thanks again!

BTW, I am now skype-able...yippee! Finally a new computer!

>

> Hi Greg,

>

> I'm assuming that you are interested in USA patients only. Are you

planning

> on helping patients financially outside the US?

>

> Zavie

>

>

>

> Zavie (age 71)

> 67 Shoreham Avenue

> Ottawa, Canada, K2G 3X3

> dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> 2.9 log reduction Feb/07

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> 3.7 log reduction Jan/09

> 3.8 log reduction May/09

> 3.8 log reduction Aug/09

> 4.0 log reduction Dec/09

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 613-482-4801

> Cell: 613-282-0204

> ID: zaviem

>

> _____

>

> From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

> gregscmlhope

> Sent: May 11, 2010 10:58 AM

> groups (DOT) <mailto:%40> com

> Subject: [ ] Monthly, our of pocket, expenses associated with CML care

-

> SURVEY

>

>

> Hello everyone,

>

> We need your input and want to know how much you pay in out of pocket

> expenses per month for your CML care.

>

> Would you take a few moments to participate in a very brief survey? It is

> completely anonymous and requires no identifying information.

>

> Here's the link: http://www.surveymo <http://www.surveymo

<http://www.surveymonkey.com/s/3fsr63c> nkey.com/s/3fsr63c>

> nkey.com/s/3fsr63c (copy and paste into your browser)

>

> Your input will help us as we further develop programs and services to

help

> in our community.

>

> Thank you,

>

> Greg s

> The National CML Society (USA)

>

>

>

>

[Guest guest]

I will join you..look forward to it.

Now, regarding the discount. You're right, not everyone would realize a

savings, particularly if they are paying a co-pay and insurance covering the

rest. However, for those that would have to pay out of pocket, then get

reimbursement, it could possibly help them not have to have SO much money up

front. And, the group card would apply to any prescriptions they might have to

fill - it would not be limited to CML drugs. Just trying to do whatever I can

to be helpful, thus exploring some options. Can't hurt to ask, right? :-)

The MAIN reason I posted the survey was to see if everyone could share their

unique, out of pocket expenses that they feel can be directly attributed to CML

care. That might be travel, hotels, extra co-pays per month for doctors visits,

etc.

> >

> > Hi Greg,

> >

> > I'm assuming that you are interested in USA patients only. Are you

> planning

> > on helping patients financially outside the US?

> >

> > Zavie

> >

> >

> >

> > Zavie (age 71)

> > 67 Shoreham Avenue

> > Ottawa, Canada, K2G 3X3

> > dxd AUG/99

> > INF OCT/99 to FEB/00, CHF

> > No meds FEB/00 to JAN/01

> > Gleevec since MAR/27/01 (400 mg)

> > CCR SEP/01. #102 in Zero Club

> > 2.8 log reduction Sep/05

> > 3.0 log reduction Jan/06

> > 2.9 log reduction Feb/07

> > 3.6 log reduction Apr/08

> > 3.6 log reduction Sep/08

> > 3.7 log reduction Jan/09

> > 3.8 log reduction May/09

> > 3.8 log reduction Aug/09

> > 4.0 log reduction Dec/09

> > e-mail: zmiller@

> > Tel: 613-726-1117

> > Fax: 613-482-4801

> > Cell: 613-282-0204

> > ID: zaviem

> >

> > _____

> >

> > From: groups (DOT) <mailto:%40> com

> [mailto:groups (DOT) <mailto:%40> com] On Behalf Of

> > gregscmlhope

> > Sent: May 11, 2010 10:58 AM

> > groups (DOT) <mailto:%40> com

> > Subject: [ ] Monthly, our of pocket, expenses associated with CML care

> -

> > SURVEY

> >

> >

> > Hello everyone,

> >

> > We need your input and want to know how much you pay in out of pocket

> > expenses per month for your CML care.

> >

> > Would you take a few moments to participate in a very brief survey? It is

> > completely anonymous and requires no identifying information.

> >

> > Here's the link: http://www.surveymo <http://www.surveymo

> <http://www.surveymonkey.com/s/3fsr63c> nkey.com/s/3fsr63c>

> > nkey.com/s/3fsr63c (copy and paste into your browser)

> >

> > Your input will help us as we further develop programs and services to

> help

> > in our community.

> >

> > Thank you,

> >

> > Greg s

> > The National CML Society (USA)

> >

> >

> >

> >