Kelowna family wants drug funding for child’s brain-threatening disorder

A Kelowna family is upset with the B.C. Ministry of Health's recent decision to deny funding for treatment of phenylketonuria.

Connor Laing (left) takes one of the weekly blood tests required with his condition

A Kelowna family is upset with the B.C. Ministry of Health’s recent decision to deny funding for treatment of a brain-threatening disorder.

Phenylketonuria (PKU) is a rare disorder that occurs when the body is unable to process phenylalanine: An essential amino acid found in the protein of most foods.

If left untreated, symptoms of PKU can range from mild cognitive impairment to severe mental retardation.

Ten-year-old Connor Laing of Kelowna was diagnosed with the disease at birth through B.C.’s newborn screening program.

“We have to watch everything he eats and have a very regimented intake,” said Connor’s mother, Lisa Laing.

Currently there are 150 patients living with PKU in B.C.

The first and only pharmaceutical treatment for PKU is a drug called Kuvan.

According to Canadian PKU and Allied Disorders Inc. president John Adams, the drug works for approximately 40 per cent of  PKU patients by reducing blood phenylalanine levels when taken in conjunction with a phenylalanine-restricted diet.

Since Connor started taking Kuvan his blood phenylalanine levels have been cut in half. The favourable results have allowed Connor to eat more natural foods.

“It’s been a drastic change,” said Lisa.

“Simply put, the poison that’s running through his body is cut in half—that’s with him eating two or three times as much natural protein as he was taking before.”

The B.C. Ministry of Health completed a review of Kuvan this summer and decided it would not fund the drug for PKU patients “because of unclear benefits and high drug costs.”

Minister of Health Margaret MacDiarmid said the annual cost of medication can be as high as $180,000 annually per patient.

But according to Adams, that number is “highly misleading.”

He suggested the average annual cost would be more along the lines of $70,000 per patient.

The province has also opted not to fund medical food, which helps PKU patients manage their blood phenylalanine levels.

“The Ministry of Health doesn’t fund food,” said MacDiarmid.

“There are a lot of other conditions that require a special diet and we’ve made the decision that’s something that wouldn’t be covered under the health ministry.”

Adams said B.C. is the only provincial health ministry in Canada that doesn’t cover the medical food for PKU patients.

Although Kuvan has been approved by Health Canada, MacDiarmid said the decision to not provide funding for the drug was based on direction from the Common Drug Review and Drug Benefit Council.

The Common Drug Review is administered by the Canadian Agency for Drugs and Technologies in Health and analyzes how well a drug works when compared to similar drugs that treat the same condition and whether the drug provides value for money.

The Drug Benefit Council considers whether the drug is good value for B.C. residents, whether PharmaCare already covers an equally beneficial drug and looks at available information on the clinical effect of the drug.

“We did a review based on that information. It took about a year to go through all the evidence and all those bodies, then we decided we would follow their recommendations and not cover it,” said Ryan Jabs, spokesperson for the B.C. Ministry of Health.

“If we kind of move away from the recommendations and start covering them because it provides a little bit of hope, our drug costs will continue to spiral.”

MacDiarmid, who has experience as a physician, said she never encountered a patient with PKU.

“I remember all of my patients being tested for it; I remember learning about it in school because the ability to test for it was a huge breakthrough. But I don’t remember ever caring for a baby or for a family that had a child with PKU.”

According to the health minister, about three or four babies are born with PKU each year in B.C..

MacDiarmid said an ongoing research study is currently taking place, with results set to be available late next year. She said the ministry will continue to follow that research.

For Adams, that solution isn’t good enough.

“Unfortunately I think the senior bureaucrats have made a decision that this is a small group of people who they can ignore and deny access to medical therapy. I think that’s a tragedy for public health care in B.C.,” said Adams.

The Laings’ private insurance provider has agreed to cover Connor’s Kuvan medication for a year and review coverage possibilities after that. But if the coverage is not extended, Lisa said they won’t be able to afford to buy Kuvan on their own.

That may prove to be a difficult transition for a rapidly growing young adult who has become accustomed to a certain level of protein in his diet.

“We do everything we can as a family to protect my son’s brain so he can grow up and be a healthy, happy, productive member of our society.

“The government is kind of saying, ‘You’re on your own.'”


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