Health ministry should protect citizens regardless of rarity of their disease

B.C. is behind other provinces in terms of funding low protein medical foods for treatment.

To the editor:

PKU (phenylketonuria) families are grateful to reporter Wade Paterson (Family Seeks Drug Funding for Child’s Brain-threatening Disorder, Nov. 2 Capital News) 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.

Health Canada recognized Kuvan as the first drug to address a serious unmet medical need—better control of the neurotoxin phenylalanine, and gave it priority review. 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. Some patients in B.C. and across Canada are already seeing the benefits of this treatment to protect their brains.

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 B.C. Minister of Health since 2009 and are still hopeful that the Minister will meet with us soon.

The government is responding to the media on this issue by providing only select information which is misleading. For example, the Minister is deliberately omitting that the Common Drug Review advised provincial drug programs to work with the manufacturer to determine funding criteria for those patients who see significant clinical benefit from this treatment.

As reflected in the Minister’s statement to the media, 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 wellbeing of its citizens—regardless of the rarity of the disease they are facing?

John Adams,

president and CEO,

Canadian PKU and Allied Disorders

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