Canadians with Rare Diseases Denied Chance for Life by Common Drug Review

    Canadian government challenged by patients and supporters to respond to
    charges they are unjustly denying potentially life-saving treatments

    OTTAWA, April 24 /CNW/ - Today, Durhane Wong-Rieger, President of the
Canadian Organization for Rare Disorders (CORD), challenged the Canadian
government to respond to charges made by patients and families with rare
disorders that they are being unjustly denied potentially life-saving
medicines. At a media conference focused on the Common Drug Review (CDR) and
rare diseases, Ms. Wong-Rieger discussed the shortcomings of CDR assessment
and the need for a Canadian orphan drug plan.
    "The process used by CDR - our national drug review agency - is
inherently biased against rare disorders. They are denying patients with rare
diseases access to breakthrough, and potentially life saving, new medical
treatments," says Wong-Rieger. "The CDR is using inappropriate, inadequate and
unethical standards to evaluate drugs for rare diseases, resulting in negative
coverage recommendations for nearly every one of these orphan drugs."

    The CDR Review of NEXAVAR(R)
    NEXAVAR(R) is one of the latest orphan drugs to be evaluated by the CDR -
it is a proven kidney cancer treatment approved by Health Canada, covered in
13 countries, and by most Canadian private drug plans. The CDR, however, has
recommended government drug plans (outside of Quebec) not cover NEXAVAR(R).
    "This is a devastating result for Canadian Kidney Cancer patients," says
Tony Clark, co-founder of the Kidney Cancer Support Group and a kidney cancer
    Mr. Clark was first diagnosed with kidney cancer in June 2004 and
discovered soon after that it had metastasized to his lungs. He was told that
he had one year to live.
    "That was a result I just couldn't accept," recalls Clark, "so I decided
to enroll in a clinical trial based in the United States of NEXAVAR, a
promising new kidney cancer treatment. I was fortunate enough to be accepted
and because of this breakthrough treatment, the disease is now stabilized and
I am back at work and am enjoying life. Without NEXAVAR I wouldn't be here

    The Need for an Orphan Drug Plan
    Canada is the only developed country without an orphan drug policy.
Orphan drugs are treatments that are developed to treat rare diseases with
very small populations. Despite the small numbers affected by each disease,
there are up to 6,000 rare disorders affecting nearly 10% of the Canadian
population. Thanks to advances in science and breakthrough treatments, some
disorders can now be treated so patients live longer and have a higher quality
of life.

    The Challenge to the Government
    "It is critical that governments acknowledge that the CDR is
inappropriate for rare disorders and that they establish a separate review
body as part of an Orphan Drug Program," says Wong-Rieger. "Canadian patients
with rare disorders are being denied access to breakthrough therapies
available in other countries that can help extend and improve their lives."
    Ms. Wong-Rieger's challenge to the CDR is timely as the Standing
Committee on Health is in the process of evaluating the CDR and will hear
testimony on April 25th from the Federal, Provincial and Territorial
governments that fund and operate the CDR.
    "We felt it was essential that Committee members have in mind the
concerns of the patients as they listen to the government managers of CDR,"
says Wong-Rieger. "Our governments are obliged to ensure equitable,
accountable and transparent access to health care for all Canadians - this was
the original intent of CDR."

    Common Drug Review (CDR)
    The CDR is a government appointed agency that makes recommendations to
provinces (with the exception of Quebec) regarding listing decisions for new
drugs. The CDR is governed by Deputy Ministers of Health who are in turn
appointed by provincial Premiers. As such the CDR is accountable to Canadians.
    Before the creation of the CDR, Canada's federal, provincial, and
territorial drug plans had separate processes for conducting reviews and
making formulary listing recommendations. The CDR was set up to reduce
duplication, and to provide equal access to high level evidence and expert

    Canadian Organization for Rare Disorders
    CORD is Canada's national network for organizations representing all
those with rare disorders. CORD provides a strong common voice to advocate for
health policy and a healthcare system that works for those with rare
disorders. CORD works with governments, researchers, clinicians and industry
to promote research, diagnosis, treatment and services for all rare disorders
in Canada.

    (1) CADTH/CDR Web site,

    /NOTE TO PHOTO EDITORS: A photo accompanying this release is available on
    the CNW Photo Network and archived at
    Additional archived images are also available on the CNW Photo Archive
    website at Images are free to accredited
    members of the media/

For further information:

For further information: Media Contact: Steven Lott, Communications
Director, Ward Health Strategies, (905) 577-6200 ext. 424, (905) 928-5688,

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