Saskatchewan follows Ontario in funding brain-protecting treatment

- Other provinces urged to provide Kuvan as an option to treat Phenylketonuria (PKU) -

SASKATOON, SK, Sept. 17, 2013 /CNW/ - Canadian PKU and Allied Disorders (CanPKU) is pleased to learn that Saskatchewan has joined Ontario as a province that has approved Kuvan (sapropterin dihydrochloride) for reimbursement through its public drug program. Now, patients in the remaining provinces are urging their elected members to follow their lead and fund Kuvan - the first and only Health Canada approved drug therapyⁱ for Phenylketonuria (PKU) - as an option to protect patients against this rare, brain-threatening inborn metabolic disorder.

"We are delighted that Saskatchewan has decided to fund Kuvan, joining Ontario as a province that trusts in the available evidence for this treatment and understands the importance of protecting patients' brains from this devastating condition," says John Adams, president of CanPKU and father to an adult son with PKU. "We look forward to congratulating the remaining provinces in the near future, as we are hopeful that they, too, will commit to raising the bar of PKU care to national, and international, standards and best practices."

Question of inequity raised as Kuvan access varies across Canada
Depending on the province, patient access to publicly-funded treatment for PKU through provincial drug programs is varied - raising a question of inequity amongst PKU families across Canada, and leaving patient advocates to relentlessly pursue additional support to improve health outcomes. In addition to Ontario and Saskatchewan, the Quebec government funds Kuvan on a case-by-case basis for women with PKU in the province who are pregnant or plan to become pregnant.ⁱⁱ

Provincial access to medical foods, a critical component of the complicated and highly-restrictive PKU diet, also varies across Canada.  Some provinces only provide the bare minimum quantity of medical food coverage, while others are more generous - presenting another unacceptable imbalance, since medical foods can help prevent devastating neurocognitive, psychiatric and physical symptoms caused by the disease.

PKU patients are also facing a treatment access barrier from their private insurance companies. Only some patients are able to access Kuvan through their existing private insurance plans, caught in the middle and left without the support they so desperately need.

"As member of the PKU community in Saskatchewan, I am so thrilled to hear that our government has taken another step to protect the brains of PKU patients by providing publicly-funded access to Kuvan for those who can benefit from this important treatment option," says Heather Garton, from Saskatoon, Saskatchewan.  "We are grateful to the Saskatchewan Ministry of Health for the continued support of our community's wellbeing, which includes the decision last year to fund the medical foods that, like Kuvan, are so important in helping PKU patients manage their disease.  We are hopeful that this government will also recognize our need for a dedicated, fully staffed clinic for metabolic disorders and will take steps to remedy the current system."

To date, Kuvan is publicly funded and accessible to patients with PKU around the world in countries such as Germany, France, Italy, Spain, Greece, Netherlands, Austria, Norway, Slovakia, Denmark, Belgiumⁱⁱⁱ, the United States, Japan and Switzerland.

About PKU
PKU (phenylketonuria) is a rare inherited, brain-threatening metabolic disorder, observed when the body is unable to process phenylalanine ("Phe"), an essential amino acid found in dietary protein. The resulting accumulation of Phe in the blood is toxic to the brain, and if left untreated, symptoms can range from mild cognitive impairment to severe mental retardation. Approximately 1 in 12,000 to 15,000 infants in Canada is born with PKU.  All provinces and territories, including B.C., offer newborn screening tests to determine if a child is born with PKU.  If PKU is detected, the appropriate treatment must be initiated immediately and maintained throughout life to ensure normal brain development.

About Canadian PKU and Allied Disorders Inc.
Canadian PKU and Allied Disorders Inc. is a non‐profit association of volunteers, dedicated to providing accurate news, information and support to families and professionals dealing with PKU and similar, rare, inherited metabolic disorders. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families. By allied disorders we mean other rare, inherited metabolic disorders also detected by newborn screening. For more information, visit www.canpku.org and download our comprehensive resource for patients and families, PKU and the Brain.

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References
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ⁱKuvan [product monograph]. Toronto, ON: BioMarin Pharmaceutical (Canada) Inc.; 2010.
ⁱⁱAjout aux listes de médicaments - Médicament d'exception [KUVAN]. INESSS. Available at : http://www.inesss.qc.ca/index.php.  Accessed on February 16, 2012.
ⁱⁱⁱKuvan in Europe.  The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria. Accessed on December 8, 2011. Available at: http://www.espku.org/en/component/content/article/48-kuvan-in-europe.html

SOURCE: Canadian PKU and Allied Disorders Inc.

Beth Daniher
Cohn & Wolfe
416-924-5700 ext. 4070
[email protected]