Download Rare Disease Patients Honour Ontario Drug Plan Executive Officer

Rare Disease Patients Honour Ontario Drug Plan Executive Officer
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
treatment.
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
Kirsten 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
f 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 more information, please contact:
Angela Covato
Project Manager, Canadian Organization for Rare Disorders
Tel: (416) 994-0077 Email: [email protected]