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Who owns CML information?

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Hi all -

This morning my digest version of this group included a very offensive message

from a member of this group. I'm not going to repeat it, but I am going to say a

few things.

Every single day people are newly diagnosed with CML and start the same journey

that all of us are on. The search for accurate information and support is

challenging and adds to the stress of a cancer diagnosis.

Those who have been living with CML have the opportunity to be mentors to others

and help them learn how to adjust to this new life. There is more than enough

work to be done, and there are many, many gaps in meeting the needs of patients.

As with any disease, there are a wide variety of choices for information. As

with any disease, some of those choices are helpful and others are misleading.

One of the reasons I am on the Board of Directors of the Patient Empowerment

Network (U.S.) is to put new tools in place that will make it simpler for

patients to know the difference. We are in the early stages of development, but

we know the problems out there and we have tapped into some key leaders who

understand the issues and problems patients face.

I have worked in healthcare management for more than 20 years, currently work

for one of the top 10 health media companies in the world, and I have a strong

personal knowledge of the inner workings of literally hundreds of advocacy

groups.

The work being done by the National CML Society of the United States is

ground-breaking and is leading the way for what will become a model for patient

advocacy groups of the future. I am one of the many people who provides support

that is enabling this group to go forward. I am not beholden to anyone and my

integrity is not for sale. I have, in fact, turned down offers by a major

pharmaceutical firm to be compensated by them for videos for CML patients

because the message was being controlled by the drug company and I will not

participate in any activities that could harm patients.

Living with CML on a daily basis is hard for many of us. The individual efforts

of many people, and the group efforts of organizations in the US, Canada, and

around the world, are important. Our mutual goal is to live the best live

possible with this disease. A key factor in doing that is to support and help

each other. That is where I choose to put my energy and I hope you will do the

same.

Pat in Phoenix

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