AFTER twelve years of fatigue and stabbing stomach pain, Garrett Shakespeare received the medical treatment he may have needed since childhood at Vancouver General Hospital on Monday.
Shakespeare, 23, suffers from paroxysmal nocturnal hemoglobinuria, an extremely rare and likely fatal disease that attacks red blood cells.
After doctors were mystified by a series of stomach aches, Shakespeare was diagnosed with PNH while in the fifth grade.
The disease is usually managed with blood transfusions, but after his doctors decided that treatment would be ineffective last year, Shakespeare was prescribed steroids. Prednisone helped with pain and anemia, according to Shakespeare, but the drugs left the North Vancouver lifeguard dealing with weight gain, acne, mood swings and skin irritations.
Shakespeare had been hoping to receive infusions of eculizumab, more commonly known as Soliris, since the treatment was approved in Canada two years ago. Unfortunately for Shakespeare, the annual price tag of approximately $500,000 put the drug out of reach until governments across Canada moved to provide public access to Soliris treatments last Friday.
The decision was announced the day Shakespeare turned 23.
"(I was) just hoping they'd made a decision soon because I didn't think I had that much longer left," he said.
Shakespeare suffered a blood clot in June, and said he hasn't been able to work in over a month.
Besides the blood clot, Shakespeare's field of vision has been limited by a cataract, forcing him to wear sunglasses nearly every time he's outside. Still, Shakespeare said conversations with his doctor and other PNH patients kept him optimistic.
"I knew that if I kept on pushing and kept making people aware that they couldn't let that many people in Canada just die," he said.
There are approximately 90 people in Canada with PNH.
After waking up at 5 a.m. and fielding interviews on Monday, Shakespeare made his trip to the hospital.
"They'd never given (Soliris) to anyone there before," he said.
The infusion took 45 minutes, but his stay was three hours, partially because hospital staff is very cautious when handling the drug. "They don't even mix it up until you're there because it's so expensive," Shakespeare said.
Shakespeare will need the treatment once every two weeks for the rest of his life.
"I don't really feel that different yet," he said, approximately 24 hours after the treatment. "My stomach doesn't hurt as much today as it did yesterday."
Shakespeare said he's scheduled to return to work on Wednesday, and was cautiously optimistic about feeling normal in about six months.
"It's a weird feeling, because I haven't felt normal for 11 or 12 years, so I don't know how I'm going to feel once it all takes effect."
Asked what helped him cope with his disease and the delay in receiving treatment, Shakespeare said with a small laugh: "Just not wanting to die, I guess."
