As an adult living with phenylketonuria (PKU), I appreciate reporter Sylvie Paillard’s efforts to share my story and the issue of public funding for approved medical treatments such as the drug, Kuvan, and medical foods.
To prevent the brain-damaging effects of PKU, experts and patients know that
access to a three-pronged treatment approach is not only ideal, but medically necessary.
The first treatment component of the brain-protecting treatment regime is the metabolic amino acid formula required by all PKU patients for proper growth and development — an essential tool that all provinces, including B.C., have funded for several decades.
The second component is low-protein medical foods. The B.C. PKU community has been working closely with the Minister of Health to increase the existing medical food subsidy provided to national standards, and would welcome additional funding to ensure all patients can afford to access this treatment tool.
The newest component of this treatment plan, Kuvan, has been completely overlooked by our government.
Countries around the world and provinces such as Ontario and Saskatchewan have made this breakthrough treatment available to all PKU patients who respond to it.
In Quebec, Kuvan is funded on an individual application basis for women who are pregnant or plan to become pregnant.
If the existing body of published scientific evidence is good enough for these governments to fund Kuvan, why is the same data not good enough for B.C. PKU patients?
After so many years of advocating for improved access to treatment in this province, I am truly thankful for the leadership and support of Terry Lake on this issue, as both my MLA and Minister of Health, but I urge him to provide full access to all treatment tools including medical foods and Kuvan.
I have great faith that Lake will do what is right for PKU patients across the province to prevent the devastating impacts of this disease.