Beginning Jan. 1, 2014, patients diagnosed with rare genetic disorders, such as phenylketonuria (PKU), will receive a monthly food subsidy of up to $250 to pay for low-protein foods, Health Minister Terry Lake announced today.

"Patients with PKU and related disorders will now have more support in managing their illnesses," said Lake. "This food subsidy aims to ease some of the financial pressure associated with having PKU and help patients across British Columbia live longer, healthier lives."

With about 209 patients being treated for metabolic disorders in B.C., the total cost of this support is expected to be $700,000 per year.

The Provincial Health Services Authority will manage the subsidy program and will continue to supply, free of charge, the metabolic formula that PKU patients need for proper body development. With this announcement, British Columbia joins eight other provinces in providing people with PKU financial assistance for low-protein foods."  

"This is fabulous news for the B.C. PKU community," said Amanda Cosburn, a PKU patient and advocate. "I am thrilled that our voices were heard, and although the journey is not over, this will help many people. I am very excited as this will help me obtain the quality of life and health that I deserve, and will also make my dream of being a mother a possibility. I am so grateful to Health Minister Terry Lake and Canadian PKU & Allied Disorders Inc., as well as all the PKU advocates who have worked so hard to make this a reality."

"We are thrilled the Ministry of Health will provide access to one more medically necessary treatment for PKU, which will improve the health outcomes of many patients," said Nicole Pallone, vice-president of Canadian PKU and Allied Disorders Inc. "This is the biggest enhancement to the health care of B.C. PKU patients since the implementation of the newborn screening program back in 1964, and will allow patients to better protect their brains from damage. I sincerely thank Ministers Terry Lake, Bill Bennett and Steve Thomson for their continued support, as well as everyone who joined CanPKU in advocating for this necessary treatment."

People with PKU and related disorders cannot break down the amino acid phenylalanine, which is a component of protein. They are therefore unable to eat foods such as meat, chicken, fish, eggs, nuts and dairy products.

Specially modified, low-protein breads, pastas and other foods, along with fruits and vegetables, make up the diet of a metabolic disorder patient. These modified foods can be very expensive.

If not screened for and properly managed from birth, PKU and related disorders can cause severe intellectual disabilities and restrict brain development. B.C. screens every child for PKU right after birth to lower the risks of the condition.

Media Contact:

Ryan Jabs
Media Relations Manager
Ministry of Health
250 952-1887 (media line)