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NL Ignoring Needs of People with Rare Genetic Disease Called PKU
The provincial government is exceptionally restrictive in its coverage of the costly nutritional supplements and medicines that can improve the lives of people with PKU.
Thursday, August 1, 2019

Office of the Official Opposition 

For Immediate Release

 

St. John’s, NL (August 1, 2019) – PC Opposition Health Critic Dave Brazil is calling on the Ball government to stop ignoring the needs of people with a rare genetic disease called phenylketonuria, or PKU.

PKU is a rare inherited disorder that causes an amino acid called phenylalanine to build up in the body. It is caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine. The build-up can causes serious health problems, so people with PKU must follow a strict diet for the rest of their lives.

But the provincial government – unlike others in the country – is exceptionally restrictive in its coverage of the costly nutritional supplements and medicines that can improve the lives of people with PKU.

One such medicine is a breakthrough biotic that can help break down phenylalanine in the body, relieving people of the terrible symptoms of elevated levels.

Brazil said, “I was delighted to be invited to a conference at Memorial's Faculty of Medicine on July 6 where physicians and patients talked about challenges and solutions.”

“One of the solutions that is badly needed is better coverage of the costly supplements and medicines that can enable people with PKU to live healthier and better lives. Denying people this help is causing many to suffer, reducing their quality of life and perhaps shortening their lives. That’s wrong,” he said.

“I encourage the Minister of Health to meet with sufferers and fellow physicians to get a better understanding of the challenges people are facing and the solutions that the government can help put within their reach,” he said.

 

Contacts:

Bradley Russell

Director of Policy and Research

(p) 1.709.729.3668

BradleyRussell@gov.nl.ca

 

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