Media Advisory - To harm or protect? Ontarians affected by rare, brain-threatening disease seek improved access to first and only drug therapy

TORONTO, May 26, 2015 /CNW/ - On Wednesday, May 27, 2015, patients and families affected by PKU (phenylketonuria), a rare, inherited brain-threatening disorder, are gathering at Queen's Park to ask the government to stop harming and start protecting the brains of children and adults living with PKU in Ontario, by making the first and only pharmaceutical treatment for this disease accessible to patients who respond to it.

PKU occurs 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 untreated, symptoms can range from mild cognitive impairment to severe, permanent intellectual disability.

Approved by Health Canada in 2010, Kuvan (sapropterin dihydrochloride) is proven to reduce toxic levels of Phe in the blood of patients with PKU when taken in conjunction with a restricted diet, synthetic formulas and medical foods. International treatment guidelines and PKU experts support a lifelong treatment using a combination of therapies, including Kuvan.

Why:	Ontario listed Kuvan in February 2013, but after more than two years, no patients have access to this treatment option through the Ontario Public Drug Program. Highly restrictive criteria are preventing patients who respond to Kuvan from qualifying for publicly-funded access to this brain-protecting medication – despite guidance from medical experts in Ontario and worldwide.
Who:	John Adams, president and CEO, CanPKU, and father to an adult PKU patient
	John W. Adams, adult PKU patient from Toronto, currently treated with Kuvan
	Tatiana Docui, mother to an adult PKU patient, Radu Docui
	Michael Harris, Member of Provincial Parliament, Kitchener-Conestoga
Where:	Legislative Assembly of Ontario Media Studio, Legislative Building, Queen's Park Toronto, Ontario
When:	Wednesday, May 27, 2015
	9:45 a.m. – 10:15 a.m. News Conference

The individuals listed above and other PKU patients and family members will be available to speak with media after the news conference, and later in the day following Question Period. 

SOURCE Canadian PKU and Allied Disorders Inc.

For further information, to confirm attendance or to book an interview, please contact: Beth Daniher, Cohn & Wolfe, 647-259-3279 / 416-417-8093 (cell), [email protected]; Stephanie Ronson, Cohn & Wolfe, 647-259-3278, [email protected]