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Denied treatment, family speaks out
Province won’t cover drug that helps PKU patient lead normal life Brent Richter brichter@nsnews.com
A North Vancouver family says the province is unfairly denying them treatment for a rare disease that threatens to leave their son with devastating brain damage. The Ministry of Health announced last month that it would not offer PharmaCare coverage for Kuvan, a new and costly drug for the treatment of phenylketonuria (PKU), a genetic disorder that causes the body to metabolize regular protein into a dangerous neurotoxin. The reasons given: too expensive without adequate proof of benefit. For 18-year-old North Vancouver resident Svenga Forstrom, who is one of just 250 people in the province with the disease and one of only 60 who would reportedly respond to treatment with the drug, the decision means a much more difficult life ahead, according to his family. PKU sufferers must adhere to an extremely strict low-protein diet that eliminates almost
all regular food or face gradual brain damage. Left unmanaged, PKU would lead to such severe mental incapacitation that the patient would have to be institutionalized, according to John Adams, president of CanPKU, a group lobbying provincial governments to cover the new drug. Svenga has been taking Kuvan since being approved for a drug trial two years ago. He says it has made a dramatic difference in his life. “(Kuvan) makes it easier for me to keep track of what I’m eating, or not have to worry so much about keeping track. It’s great,” he said. “It can be overwhelming to have to break down every single thing you eat into portions and then figure out how much phenylalanine was in each portion for everything.” “His tolerance for normal dietary protein has at least doubled — probably somewhat more than doubled — while being on this drug,” said John Forstrom, Svenga’s father. “That increase makes a huge difference in terms of his general quality of life.” The results are even more profound among some other patients, Adams said. Svenga is one of a very lucky few to have access to the drug, which is 90 per cent covered by his father’s private health insurance. But the day looms when he will not longer be covered by his father’s private plan.
See Drug page 3
Con artist ripped off multiple homeowners in skylight scam
Crooked N. Van contractor gets house arrest Jane Seyd jseyd@nsnews.com
A North Vancouver contractor who specialized in putting holes in his clients’ bank accounts has been handed a six-month conditional sentence, including three months of house arrest, after being found guilty of fraud. Judge Joseph Galati of the Vancouver provincial court handed the sentence to Don Nelsen Oct. 24 after concluding that Nelsen took deposits from two customers then took off without doing the work or returning the money. “I find that Mr. Nelsen, in each case, committed an objectively dishonest act,” wrote
Galati. During an earlier trial, two families, in North Vancouver and Vancouver, testified about their renovations gone wrong with Nelsen. In each case, the customers hired Nelsen to replace or install skylights in their home and paid Nelsen a deposit. Nelsen then delayed starting work, made excuses and never returned to complete the jobs or give back the deposits. In the first case, one family paid Nelsen $5,000 as a deposit to replace skylights. Nelsen made excuses for not showing up to start work, telling the homeowner he was busy with other jobs. “There appear to have been numerous conversations and numerous broken promises as to when the work would be done,” wrote See Fraudster page 5
NEWS photo Mike Wakefield
NORTH Vancouver resident and PKU sufferer Svenga Forstrom, 18, with his hugely expensive medication and food supplements. Forstrom has just a few more years of coverage under his father’s private insurance plan before he will be forced to stop treatment. His family is lobbying to have the medication covered by B.C.’s PharmaCare.
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