Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 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 Quote Link to comment Share on other sites More sharing options...
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