DRAFT CONSTITUENT LETTER TO MLA - BC
Your Name & Address
Your MLA’s Name & Address
Dear (fill in their surname of MLA - i.e. Dear Mr. Jones),
I am writing as a constituent of yours and as someone touched by a rare genetic condition. I would like to meet with you to discuss access to an important new medication called KUVAN, approved by Health Canada over two years ago for the treatment of all people with phenylketonuria (PKU).
INSERT A BRIEF PARAGRAPH OUTLINING YOUR PERSONAL STORY AND THE LINK YOU HAVE TO A PERSON WITH PKU. IF YOU HAVE EXPERIENCE WITH KUVAN, PLEASE MENTION THE IMPACT THAT THE MEDICATION HAS HAD ON THE PERSON WITH PKU.
PKU is an inherited metablic disorder. It results in an accumulation in the blood and brain of toxic levels of phenylaline or "Phe". If left untreatd, symptoms of PKU can range from mild cognitive impairments to severe mental retardation and epilepsy. While all provinces and territories offer universal newborn screening tests to determine if a child is born with PKU, it is also critical to the child's brain development that the appropriate treatment is initiated immediately and maintained throughout life.
For decades, the only treatment for this brain-threatening condition has been lifelong adherence to a severely restrictive low-Phe diet reliant on synthetic formulas and medical foods. The PKU diet is severe: no meat, no fish, no dairy such as milk or cheese, no nuts/legumes, no soy, no regular bread, cereal and pasta. Patients who are unable to adequately control their Phe levels often suffer from severe neurocognitive impairment with psychosocial impacts. It is now well established that as people with PKU move through their teenage years into adulthood, they experience increasing difficulties in achieving control of their Phe levels due to the challenges of the restricted diet.
In Canada, people diagnosed with PKU through government-provided newborn screening programs require new treatment options to enable them to better manage their disease and achieve the best possible outcomes. KUVAN, a new drug therapy used in combination with a medical food-based Phe-restricted diet, was approved by Health Canada, in April 2010 but it is still not yet accessible through public funding in BC.
I am asking for the opportunity to meet with you for 30 minutes to discuss the need to immediately provide KUVAN as a choice for both people with PKU who are responsive to the medication and their health care providers in BC through public funding.
I will follow up with your office soon to schedule a mutually convenient time to meet. Thank you for your consideration and your ongoing commitment to people living with PKU, their families and loved ones.