The South Bayview Bulldog

12-year-old Madi Vanstone needs the new drug Kalydeco to live a normal life. The Beeton, Ontario girl suffers from a rare form of cystic fibrosis and only Kalydeco, a drug made by Vertex Pharmaceuticals of South Boston, Mass. treats the underlying cause.  The problem with Kalydeco is that Vertex demands a price for it which many physicians in the U.S, say is unconscionable. Shortly after the drug was approved for use by the U.S. drug agency early in 2012,  a group of 24 doctors who had worked on the project wrote to Vertex to complain. “We have invested our lives and careers toward the success of these inspiring therapeutic agents. We also write with feelings of dismay and disappointment that the triumph and honour that should be yours is diminished by the unconscionable price assigned to Kalydeco.”  In Canada,  the Ontario government estimates that a year’s treatment would cost $340,000. In the U.S., Vertex has set the price at $307,000 for a year’s treatment. In Germany, the price is said to be $450,000 per person per year. Alberta and Ontario have been among the Canadian negotiators with Vertex in efforts to negotiate a reasonable price. The medication’s effectiveness is apparently profound, the result of what is known as “rational drug design.” The process relies less on trial and error and focuses instead on known genetic factors which, if attacked directly, might lead to the kind of improvement which Kalydeco provides for patients taking it. Those who may be helped by it are few — perhaps no more than four percent of cystic fibrosis sufferers can benefit. Madi is apparently one of these, a carrier of the G551D gene mutation. She knows it works because friends, relatives and ordinary people raised enough money to get her started on it. The medication transformed the girl’s life. Today, Madi and her  mother Beth were told by Premier Wynne and Health Minister Matthews the drug is not yet covered by OHIP because the price is still under negotiation. Some provinces have banded together to use their collective buying power to cut drug costs. Alberta, which is leading the talks on Kalydeco, has made three proposals to the drug maker Vertex, but it has rejected each one, the Premier said. It’s not responsible for Ontario to undermine other provinces, she added. “Of course we don’t put a price on a human being’s life,” she told the Legislature. But a former health minister called her response “complete garbage.” The governing Liberals could fund the drug tomorrow if they wanted to, said Progressive Conservative Jim Wilson. The Opposition is recalling the long and depressing history of misspent money in response to the Kalydeco issue. Photos: Madi speaking after meeting Premier, Vertex location in South Boston, Madi with PC MPP Jim Wilson (Simcoe-Grey)

Traffic is now said to getting through through both ways after this truck fire at about 7 a.m. Monday morning on the Gardiner Expressway. It happened at the Gardiner near Jameson Ave. and caused the closure of all roads, including Lakeshore Blvd. No injuries and no explosions, although there was an early fear that there was a propane canister in the truck that might go off.  One motorist tweeted that he moved only two km in 90 minutes in his drive into Toronto from the west.  This twitter thread is active with updates   Jane Brown tweeted about 9.30 that all lanes are open. 

A resident of Upper Canada Drive, Ron Rimer, took the inset pictures recently and sent them to Jack Lakey, columnist for the Toronto Star. Mr. Rimer was astounded at the “mess-acre” as he called it of garbage bins on his street after the regular pickup. Upper Canada is near Bayview Ave. running east off from near Yonge Street. Mr. Rimer said he found the bins in the middle of the street.  Mr. Lakey’s makes the point in his Fixer column that this is an area served by CUPE sanitation workers employed by the City. He contrasts the chaos here with the neat and tidy wake (typically) of the privatized workers from the Green For Life (GFL) company which collects the refuse west of Yonge Street.  Lakey says what many know: sloppy work by unionized employees is not helpful to their job security. Many people in South Bayview can certainly testify to the way garbage bins get thrown into the middle of driveways. In fairness, of course, no one saw exactly what happened to the bins on Upper Canada. But what is clear is that the management of  GFL sends its employees to school about this matter. They expect, and they usually get, a neat arrangement of bins placed back where they came from. It doesn’t seem too difficult. The possibility of private garbage collection east of Yonge Street will be a campaign issue this year. It will be an important question for all candidates as to how they will proceed if elected.

Jan Nguyen’s new drop-in and play centre at 1517 Bayview Ave. had its grand opening today (Saturday, March 1, 2014). It is fairly unique concept which drew a large crowd of friends, acquaintances and fresh customers. Play Cafe is an opportunity for children to play and perform simple crafts while their parents have a snack, a cup of coffee and perhaps socialize a little. On this day there was entertainment in the morning and by 1 p.m. many kids were in a supervised group painting cups. Play is an idea which Ms. Nguyen worked on with her husband Crown Attorney Henry Poon from their Davisville Village home. She and her husband are parents and long-time South Bayview residents, Jan Nguyen noted as she hefted her daughter Ren into her arms. Ms Nguyen also has an extensive communications background. She worked for a decade for the Ontario Ministry of the Environment in communications. “I was in the fire department,” she conceded on suggestion. “We put out the fires.” The extended concept of Play Cafe includes drop-in play spaces, creative workshops, coffee and healthy snacks as well as availabilities for private parties.  Learn more at www.playcreativecafe.com.