North Shore News April 8 2011

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Friday, April 8, 2011

West Van: 152 pages North Van: 128 pages

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Sewing newbie gets crafty Page 21

2011 Porsche Cayenne Page 41

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Drug cost a likely death sentence

Rare blood disease’s treatment costs out of reach for NV man Jeremy Shepherd newsroom@nsnews.com

IF Garrett Shakespeare wants to live a full life, the cost will be approximately $500,000 a year. Shakespeare has an extremely rare and deadly disease that attacks his red blood cells. There is a potential cure, and it’s approved by the Canadian government. But Shakespeare can’t afford the treatment. Paroxysmal nocturnal hemoglobinuria is a potentially fatal blood disorder usually managed with blood transfusions, but Shakespeare, 22, said his doctors advised against that treatment. “My particular count of bad cells is so high that a transfusion wouldn’t be very effective,” he said before heading to his job as a lifeguard and swimming coach. Shakespeare, who lives in North Vancouver, said he’s hoping to be treated with infusions of eculizumab, more commonly known as Soliris, a treatment he said might be a miracle drug. “I would love to get some of that,” he said, his voice perking up at the mention of the drug. The treatment was approved in Canada two years ago, but the price tag has put it out of reach for Shakespeare, who has dealt with PNH since he was a child. “I had a stomach ache for months when I was in Grade 5. They tested me for everything under the sun.” Shakespeare was an avid hockey player until his diagnosis at 11, when the risk of blood clots and thrombosis forced him to stop playing. During high school, Shakespeare said he was often sidelined by fatigue and abdominal pain. “Everyone would be going to play basketball or something, and I wouldn’t be able to go because every time I stepped, it felt like someone was stabbing me in the stomach.” These days, Shakespeare said his daily pain alternates between manageable and excruciating. Shakespeare, who also DJs under the name G-Ratt, is being treated with a high See Steroids page 3

NEWS photo Paul McGrath

GARRETT Shakespeare with some of the drugs that he takes to fight a rare blood disease. What may help him is a drug called Soliris, but it costs $500,000 a year for treatment and there is no government plan to cover the expense.

There’s no catastrophic drug plan Jeremy Shepherd

newsroom@nsnews.com

CANADA does not have a catastrophic drug plan, forcing many people with chronic conditions to reach deep into their pockets to pay for prescription medicine.

“Health-care delivery is a provincial matter,” said North Vancouver Conservative MP Andrew Saxton. Saxton said any difficulty with the cost of prescription drugs is an issue to be discussed with the patient’s MLA. Saxton said the drugs approved under the umbrella of Fair Pharmacare is also a provincial issue. “It hasn’t really been an election issue,” Saxton said of the catastrophic

FEDERALL

EElection

drug plan. “I haven’t really heard it on the doorsteps.” Taleeb Noormohamed, the Liberal candidate in North Vancouver, said enacting a catastrophic drug plan would require federal and provincial governments 20 11 working together. “Mr. Ignatieff has spoken very clearly about the fact we need to have a stronger relationship with the provinces, particularly as it relates to areas where they are

See Charrois page 5

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49,000 49,100 $ 2,000 4,000 $ 47,000 45,100

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INCLUDES FREIGHT/PDI

†MSRP is $49,100 for a new Lexus 2011 RX 350 Sfx ‘A’. Upgraded RX 350 package shown: $57,100. MSRP include freight and PDI ($1,950). License, insurance, registration (if applicable) and taxes are extra. ‡$4,000 Cash Purchase Incentive may not be combined with special lease and finance rates offered through Lexus Financial Services as part of a low rate interest program. All advertised lease and finance rates are special rates. Cash Purchase Incentive offer takes place at the time of delivery. See your Lexus dealer for whether tax applies before or after the application of Cash Purchase Incentives in your jurisdiction.*Lease and finance offers provided through Lexus Financial Services, on approved credit on new Lexus 2011 RX 350 Sfx ‘A’ models. Lease example based on a 48 month term at an annual rate of 2.5% and MSRP of $49,100 and includes freight/PDI. Monthly payment is $488 with $7,950 down payment or equivalent trade in, $0 security deposit and first monthly payment due at lease inception. Total lease obligation is $31,375. Taxes, license, registration (if applicable) and insurance are extra. 96,000 kilometre allowance; charge of $0.20/km for excess kilometres. ** Finance example includes taxes and is based on 48 month term at annual rate of 2.5% and MSRP of $49,100 (excludes taxes and includes freight/PDI). Monthly payment is $1,076. Cost of borrowing is $2,547 for a total obligation of $51,647. License, registration (if applicable) and insurance are extra. Offers expire at month’s end unless extended or revised.

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