Rare Disease Patients Honour Ontario Drug Plan Executive Officer

    TORONTO, June 1 /CNW/ -

    Drug Access for Patients with Rare Disorders

    The Canadian Organization for Rare Disorders is honouring Helen
Stevenson, Executive Officer of Ontario's Public Drug Plan, for her leadership
and compassion in making drugs for rare diseases available to Canadian
patients. Ontario's Drugs for Rare Disease Program, quietly introduced in
January 2009, is already making a difference for some patients with rare
diseases. Patients who were denied access to therapies under the "regular"
drug review process are now receiving life-saving and life-enhancing

    Challenges for Small Patient Populations in Canada

    While Canada has no official definition of a "rare disorder", in most
countries it is a disorder that affects fewer than 1 in 2,000 persons. There
are more than 6,000 known rare disorders but treatment is available for fewer
than a couple of hundred. Prior to this program, almost none of these drugs
were available to patients through provincial drug plans. Because these drugs
are developed for very small patient populations, they tend to be more
expensive on an individual basis than drugs for more common conditions.
    "It has been extremely distressing for families to know that the only
effective treatment for their children's disease has been approved for use in
Canada but the provincial drug plans will not make it available," said Kirstin
Harkins, Executive Director of the Canadian Society for Mucopolysaccharide &
Related Disorders.
    After a new drug has been approved as safe and effective by Health
Canada, it must also be reviewed by two other government drug committees. The
first is the federal and provincially funded Common Drug Review, which
compares the cost of a new drug to an older drug for the same disease. The CDR
also decides whether the additional years of life provided by a new drug are
worth the cost of the drug. Even if the CDR recommends the drug, it must still
pass a second "cost-effectiveness" review by the provincial drug plans.
    According to Ed Koning, vice-president of CORD and president of the
Canadian Fabry Association, "It is unreasonable to apply rules designed for
common drugs to drugs for rare disorders. The CDR and the provincial drug
plans have rejected about 80% of rare and innovative drugs, even though they
are available to patients in most other developed countries."

    Ontario Drugs for Rare Diseases Program Represents Breakthrough

    Ontario's Drugs for Rare Diseases Program represents a significant
breakthrough over the current process. While it is currently being applied
only to a small category of rare diseases, those affecting about 1 in 100,000
to 150,000 patients, CORD hopes that it will cover all rare disorders. While
patients say the model still needs to be improved and the program expanded, it
is already attracting attention internationally.
    "At the European Rare Disorders Conference, it was recognized that the
program is not based purely on the cost of treatment but also principles of
equity and compassion," said Durhane Wong-Rieger, president of CORD. "More
importantly, we are very encouraged because Helen Stevenson is consulting with
patient organizations as the program is being developed."
    Patients, patient group representatives, families, and friends are
honouring Helen Stevenson at a reception on June 1, 2009 at 2 pm at the
Windsor Arms Hotel.

For further information:

For further information: Angela Covato, (416) 994-0077

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Canadian Organization for Rare Disorders

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