CML Society calls on patients to have a say in the future of disease management in Canada



    Patient forums to validate preliminary survey results

    MONTREAL, Oct. 28 /CNW Telbec/ - After months of compiling and analyzing
data, the Chronic Myelogenous Leukemia (CML) Society of Canada, a
not-for-profit patient education and support organization, is ready to share
with CML patients, healthcare professionals and the general public the
preliminary results of the first-ever patient survey. Preliminary findings
show that in spite of the fact that treatments are adequately managing the
disease, there is room for improvement.
    When the survey was launched in March 2008, it represented a unique
opportunity to reach out to CML patients directly. The results are already a
step in the right direction in better understanding the needs of patients in
terms of disease management, education and advocacy. However, additional
information is needed, which can only be obtained through active participation
by the patients and their families.
    "Patients need to know that they can make a difference in all areas of
this disease when their voices are heard regarding the management of CML in
Canada. The preliminary results showed us that patients want to become more
actively involved in understanding the disease and treatment options. We
needed to dig deeper with the patients. The CML Society is organizing a series
of patient focus groups taking place across Canada," explains Cheryl-Anne
Simoneau, President and CEO of the CML Society of Canada. "We are encouraging
patients to join the discussion on matters important to them: the disease,
treatment options, quality of life and funding for medications."
    According to the survey, the biggest challenge CML patients face on a
regular basis is the side effects from their treatments. In fact, 84% of all
patients, regardless of treatment, report having side effects that limit at
times their quality of life. Overwhelmingly, patients agree that the
treatments are prolonging their lives and have stabilized the disease. At
times, the treatments can have a negative impact on their quality of life.

    Preliminary findings and challenges

    The disease and treatment have an impact on work life for 77% of
patients, on social life for 82% of patients and on family life for 79% of
patients.
    The CML Society Patient Survey was the first ever attempt by a patient
group to survey patients about their current understanding, status and quality
of life issues.

    The CML Society patient focus groups

    The information collected from patient focus groups will help to provide
critical resources to help better the care and quality of life of patients
living with CML, and to hopefully improve their outcomes.
    The CML Society of Canada will also use these sessions to preview new
educational tools, share wellness tips and teach coping skills and is
committed to sharing its data from patients with national and international
communities of physicians, researchers and collaborators.

    The focus groups will take place across Canada in November:

    Saturday, November 1st - Montreal, Quebec
    Friday, November 7th and Saturday, November 8th - Halifax, Nova Scotia
    Friday, November 14th and Saturday, November 15th - Calgary, Alberta
    Saturday, November 29th and Sunday, November 30th - Toronto, Ontario

    For more information, please visit the CML Society website.

    About the CML (Chronic Myelogenous Leukemia) Society of Canada

    Established in 2006, the CML (Chronic Myelogenous Leukemia) Society
provides support, education and information on CML, current and emerging
treatments and research initiatives for people living with CML and their
families. Through these efforts and ongoing advocacy, the CML Society advances
its mission to help reduce suffering and improve care and the quality of life
of CML patients. For more information, please refer to www.cmlsociety.org.

    About CML (Chronic Myelogenous Leukemia)

    Chronic myelogenous leukemia (CML) is one of four types of leukemia and
is a slowly progressing cancer of the blood and bone marrow that is
characterized by an overproduction of white blood cells. There are three
different phases to CML: chronic, accelerated and blast. Results of a blood
test will determine the phase.
    Normally, cells are formed, mature, carry out their function, die, and
are replaced with new cells. With CML the normal blood cell production process
is disrupted. The white blood cells produce uncontrollably and do not mature
to carry out their intended function and ultimately crowd out the healthy
cells.
    In Canada, approximately 460 new cases of CML are diagnosed each year,
which represents one case for every 100,000 people. It is estimated that
approximately 3,000 Canadians are currently living with this very rare form of
leukemia, which primarily occurs during or after middle age, however it can
occur at any age.




For further information:

For further information: Muriel Haraoui, HKDP Communications and public
affairs, (514) 395-0375 ext. 235, Mobile: (514) 717-3764, mharaoui@hkdp.qc.ca;
Cheryl-Anne Simoneau, President and CEO, CML Society of Canada, (514)
932-7575, cheryl.simoneau@cmlsociety.org

Organization Profile

CML (CHRONIC MYELOGENOUS LEUKEMIA) SOCIETY OF CANADA

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