Common Drug Review Approves Myozyme(R) For Use In Infants



    Restrictive Recommendations Leave Majority Of Pompe Disease Patients
    Without Treatment

    TORONTO, June 21 /CNW/ - The Canadian Association of Pompe (CAP) would
like to applaud the decision of the Common Drug Review (CDR) Board for
recommending the use of Myozyme(R) for infants under one year of age who
present the symptoms of Pompe disease. This disease is a death sentence for
those children and Myozyme has been found to be very effective in the
treatment of the infantile onset form of Pompe disease.
    "We feel that the CDR has made a politically safe choice regarding
Myozyme. They can't be accused of allowing babies to die, and because of the
extreme rarity of Pompe disease in infants, the costs to health budgets will
be very low," said Guy Ashford-Smith, president of the Canadian Association of
Pompe. "Unfortunately, the majority of people living with Pompe disease are
adults with the late onset form of this type of Muscular Dystrophy. It is very
disturbing that the CDR recommendations ignore the majority of patients and
advise the provinces not to help us."
    Myozyme is the first and only treatment available in Canada for Pompe
disease, a rare, devastating neuromuscular disorder that progressively
deteriorates the muscles including the heart, skeletal muscles, liver and
nervous system. Pompe patients often end up dependent on wheelchairs, have to
rely on the assistance of a ventilator to breathe and die before their time.
    As the first therapy to be made available to treat any form of Muscular
Dystrophy, Myozyme offers hope for the future for all of those who suffer from
any form of this type of disease. By saying NO to this type of treatment the
Government of Canada, through the CDR, has indicated that it is not interested
in cutting edge innovative potentially life saving treatments that drug
companies provide.
    "This decision smacks of arrogance. It is odd that we as Canadians once
looked down our noses at other countries that did not have a national health
care program. However, most of the other countries in the western world, and
even some we would consider as developing nations, make Myozyme available to
their adult population based on the decision of their health care provider,"
continued Ashford-Smith. "The CDR has made a financial decision that flies in
the face of the success this treatment has had on the lives of patients. We
are sad to say that we live in one of the very few countries in the western
world that denies its citizens the chance of relief from the symptoms of a
life-threatening disease."

    About CAP

    Founded in Toronto in November 2006 by a group of Pompe families,
patients and caregivers, the Canadian Association of Pompe (CAP) is a
non-profit organization dedicated to educating Canadians about Pompe disease
and to support those diagnosed with this devastating disease. With members
from across the country, the organization aims to represent and assist people
from each province. For more information on CAP or Pompe visit
www.Pompecanada.com.





For further information:

For further information: Canadian Association Of Pompe,
www.pompecanada.com, President: Guy Ashford-Smith, (905) 821-0623,
guyashford@aol.com

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CANADIAN ASSOCIATION OF POMPE

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