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    October 23, 2007

    Letter to the Editor (Canada):

    Studies, opinions, conferences and much wringing of hands have discussed
    for years how to bring the patients' voices into cancer care. Research
    papers continue to tell us that there is a significant difference
    between what patients feel is crucial but yet often fails to translate 
    into actual care, all for a variety of reasons. Today, the Consumer 
    Advocare Network of Canada voiced similar concerns. Is this a 
    criticism? Well, yes and no. There has to be a way to move forward and 
    not take decades to do so.

    Yet, we still are not receptive to having honest and frank discussions 
    about the issues which we, as survivours, face. In these efforts, as 
    ovarian cancer patients and as a community, we have organized two
    patient-led conferences, one in the U.S. and one in Toronto. The 
    proactive decision to bring these discussions into the open and to the 
    public was quoted recently and very succinctly by Dr. Hsien-Hsien Lei: 
    "How times have changed. Cancer has come from being taboo to being a 
    subject of debate. Even better, ever more cancer survivors are now 
    leading the charge for better healthcare.".

    These conferences are a debate-style format and they will speak to the
    patients' views and analysis of the past decade in ovarian cancer. Areas 
    of discussion include access to care, genetics and survival. Very tough 
    but important talks.

    A new and exciting opportunity presents itself through these patient-led
    conferences. In ovarian cancer our 
    heroes are the women and family caregivers. So, as a community we are 
    and will continue to profile the ovarian cancer community as a 
    'community of heroes'. The intended purpose is to encourage real 
    discussion and yes, debate. We are stepping outside of the comfort box.

    These conferences have been paid for by the survivours themselves and at 
    no cost to any participant. We encourage everyone to participate because 
    it is about you! For further information visit: 
    http://ovariancancerdebate.blogspot.com/

    Sandi Pniauskas









      


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