PKU families are grateful to reporter Ron Seymour for shedding light on the issue of public funding for approved medical treatments such as the drug Kuvan and medical foods for PKU patients like 10-year-old Kelowna resident Connor Laing.
We are grateful that B.C. screens newborns to find the one in 15,000 with this lifelong, brain-threatening disorder and funds the necessary amino acid formulas (synthetic protein) required by PKU patients for proper growth and development.
Unfortunately, B.C. is behind other provinces in terms of funding low-protein medical foods for treatment, putting all of the 150 PKU patients in B.C. at greater risk of poor health outcomes. The specialized medical foods are regulated by Health Canada and cost about 10 times more than regular foods.
Now we have the first drug therapy, Kuvan, and we understand B.C. was offered the best financial terms available to public payers. We still hope to see B.C. become a leader in being the first province to make this breakthrough treatment available to all PKU patients who respond to it.
The cost of the drug is weight-based and averages $80,000 per patient per year for the 40-56 per cent of patients who could respond to the treatment. It will likely benefit about 60 people with PKU in B.C.
The B.C. Ministry of Health has demonstrated its senior officials do not understand the clear benefit of Kuvan, although published scientific research and case study evidence, accepted by government drug plans in many countries, proves that it benefits some patients.
We were dismayed this summer when discussions around funding took an abrupt reversal.
Our non-profit patient association was led to believe by the government that we could expect a positive announcement.
We are frustrated that the reasons for not funding the medical foods or Kuvan are being communicated through the media, not to patients or to our association, and that our efforts to re-engage have yet to be acknowledged.
We have been asking for a meeting with the health minister since 2009 and are still hopeful.
The B.C. government is standing in the way of improved care and the best possible outcomes for PKU patients.
Isn't the role of the Ministry of Health to protect the well-being
of its citizens - regardless of the rarity of the disease they are facing?
John Adams, president,
Canadian PKU and Allied Disorders