Saskatchewan follows Ontario’s lead in funding brain-protecting treatment;
B.C. continues to lag far behind
– Other provinces urged to provide Kuvan as an option to treat Phenylketonuria (PKU) –
Saskatoon, SK – September 17, 2013— 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 therapy[i] 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 Nicole Pallone, from Sparwood, B.C., who is vice president of CanPKU and mother to a five-year-old daughter with PKU. “We look forward to congratulating B.C. and 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.”
B.C. remains the worst province for PKU patients
While Saskatchewan agreed to cover Kuvan in September 2013, after Ontario led the way seven months prior, B.C. is the only provincial government to walk away from negotiations with the drug’s manufacturer. Over the past four years, over 20 meetings and phone calls have taken place between government officials and relentless CanPKU advocates, who continue to tirelessly pursue additional support to improve patient health outcomes.
B.C. remains the worst province in Canada for access to PKU treatments, as the only public funding that B.C. PKU patients receive is for special low-protein formula,[ii] which has formed the basis of the complicated and highly-restrictive PKU diet for the past 50 years. [iii] All provinces, including Saskatchewan, provide at least some access to medical foods for PKU patients – a key treatment necessary to prevent devastating neurocognitive, psychiatric and physical symptoms caused by the disease. However, B.C. only provides the bare minimum of coverage for the medical foods necessary to manage PKU – a nominal $40 monthly stipend, available only to PKU patients on social assistance.ii
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. 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.[iv]
“For anyone living with PKU, including adult patients who are hopeful mothers-to-be like me, it is extremely important that we have access to all available medications, such as Kuvan and medical foods,” says Amanda Cosburn, a nurse who lives in Kamloops with her partner, Cole. “We encourage the B.C. government to take note of how other provinces are supporting PKU patients and fund these essential treatment tools to ensure that the brains of adults, adolescents and children – including our unborn babies – are protected.”
Causing added concern and confusion for patients is that the B.C. government does fund Kuvan for two uses not indicated by Health Canada. The province funds Kuvan to treat BH4 deficiency (originally called malignant PKU), and as a diagnostic tool to determine whether newborns with high Phe levels have PKU or BH4 deficiency.
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, Belgium,[v] 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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For more information, please contact:
Beth Daniher
Cohn & Wolfe
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