CML Patient Survey Shows That Side Effects Are A Serious Issue And That Options Should Be Discussed

    Preliminary analysis demonstrates that patients want to be able to live
    life to the fullest

    MONTREAL, Dec. 8 /CNW Telbec/ - Startling findings from a new CML
(chronic myelogenous leukemia) patient survey were presented at a satellite
meeting of the American Society of Hematology annual meeting, in San
Francisco. The first-ever international CML patient web survey shows that the
biggest challenge is coping with treatment side effects on a daily basis. An
overwhelming 85% of respondents experience side effects.
    The Chronic Myelogenous Leukemia Society of Canada, a not-for-profit
patient education and support organization, conducted the survey which was
completed by 276 CML patients. At the time the survey was conducted, three
quarters of the patients who responded were taking first line treatment, while
one quarter were following other therapies.
    The survey shows that even with the advances in treatment in the last
decade, medications still hinder patient quality of life because of the
persistent side effects, such as nausea, fatigue, headaches and vomiting. From
a patient's perspective, not only does the prevalence of side effects weigh
heavy on their minds when they refill their prescription on a monthly basis,
but the constant reminder of the disease and its limitations, makes it almost
impossible to escape its reality. In fact, 43% of the respondents admitted to
experiencing more frequent depressed or blue periods, while 1 in 5 patients
are currently treated for depression.
    "When I was first diagnosed ten years ago, my doctor started me on a
treatment, but the side effects were so intense and debilitating that I could
not perform the most basic tasks," says CML patient Christine Sao Miguel. "Of
course, I wanted to stay alive but wondered how long I could suffer through
the treatment I needed to do so. Thankfully, my doctor and I discussed options
and I am now being treated on second line therapy and a number of the
debilitating side effects I suffered are no longer there."
    "Tyrosine kinase inhibitors, such as Sprycel and Gleevec, are drugs that
represent an innovative breakthrough and have no doubt significantly extended
patient lives. However, chronic myelogenous leukemia is still proving to be a
formidable disease on many fronts and we conducted the survey to gain insight
into the reality of a CML patient's life," explains Cheryl-Anne Simoneau,
President and CEO of the CML Society of Canada, who was diagnosed with the
cancer eight years ago. "What the survey has shown us is that side effects are
a problem for all patients and that patients and physicians need to
communicate to discuss the best option available to tackle the disease because
for now, these treatments are all that we have to battle this disease.
Patients are crying out for more information and the CML Society provides a
good source of information. Armed with the results of the survey and working
together with physicians, we can provide important input that can be used to
help improve quality of life for CML patients."

    Survey results

    The results of the web survey indicate that side effects have an impact
on work life for 67% of patients, on social life for 77% of patients and on
family life for 72% of them. Furthermore, for 74% of patients, the cost of
treatment can represent a serious burden financially, and in these difficult
economic times this is becoming a critical issue.
    As many as 61% of respondents said that there was an information gap on
how to manage the financial stress caused by CML and its treatments, and
according to patients, the information should be provided by a healthcare
professional (78%) or a patient organization (53%).
    While financial stress and side effects affect their quality of life,
another major concern for CML patients is intolerance to treatments and/or the
ability of the disease to become resistant to first-line therapy.
    "According to the latest clinical studies, after five years about one
third of patients do not achieve an optimal response to the current first-line
therapy because of resistance or intolerance," explains Dr. Pierre Laneuville,
Associate Professor in the Department of Medicine and Oncology at McGill
University. "As prescribing physicians, it is important to have several
medications at our disposal to properly treat our patients. But is it also
critical to closely follow patients to monitor their response to these
treatments, their side effects and progress."

    Patient focus group data

    The CML Society of Canada conducted several patient focus groups with the
objective of collecting information to provide critical resources to help
better the care and quality of life of patients living with CML.
    Feedback from patients confirms the key results obtained with the web
survey:

       - 85% of patients reported side effects with current therapy
       - 67% of patients reported side effects with a rating of 5 to 7
         (1 = mild, 7 = severe)
       - Patients admitted to requiring more information in order to reduce
         their fear and anxiety levels
       - Every patient reported a desire to learn more about CML, its current
         and future therapies, side effect management, testing and
         milestones.

    "The survey results provide us insight into the patient perspective that
is so critically important to the overall treatment approach," says Dr. Jane
Apperley, Chair of the Department of Haematology, Imperial College London.
"The data reinforces and extends the need for clinicians to aggressively
monitor patients in the early stages of treatment of CML to help guide
treatment strategies that will achieve the best possible outcomes."

    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 the survey

    The online survey created by the CML Society of Canada was designed to
shed more light on the challenges that patients with CML face on a daily basis
in terms of disease comprehension, medication, side effects and access to
information. The survey, which was available in three languages (English,
French and Spanish) began on March 2, 2008 and concluded on June 30, 2008
    The survey, which was conducted by Harris Decima Inc, was available to
patients from all countries.

    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.

    About the American Society of Hematology

    The mission of the American Society of Hematology (ASH) is to further the
understanding, diagnosis, treatment, and prevention of disorders affecting the
blood, bone marrow, and the immunologic, hemostatic and vascular systems, by
promoting research, clinical care, education, training, and advocacy in
hematology. For more information, please visit www.hematology.org.

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)
239-5488, cheryl.simoneau@cmlsociety.org