Immunodeficiency patients ignored in Canada: experts
Published Saturday, May 8, 2010 5:51PM PDT
White Rock, B.C., resident Maggie Bernet and her husband sit in their dining room – she's taking out needles and vials of blood, preparing to give herself a blood transfusion.
Bernet suffers from Primary Immunodeficiency Disease, a hereditary illness with no cure that makes the body susceptible to everyday bacteria many come in contact with daily but are able fend off.
"It's like there's a war going on and I have an army of white blood cells that should be fighting but the soldiers are asleep," Bernet said.
Bernet, 52, was born with the illness and has had it her whole life – she was diagnosed just five years ago.
"Even when I was a child and got childhood illnesses it was always worst than everybody else," Bernet said. "I was always sick, and the doctors just told me to take some medication and rest."
Dr. Amin Javer, who was the first to diagnose Bernet at Vancouver's Saint Paul's hospital, says many people suffering from PIDD are going undiagnosed in the country.
"I think there are a lot of people who have it and who don't know it," he said.
Currently there are about 2,000 people in Canada who have been diagnosed with PIDD, according to the Canadian Immunodeficiency Patient Organization.
But CIPO president Tina Morgan said that's only because they're going undiagnosed, and that one in every 1,000 Canadians have PIDD and don't know it.
"Our biggest problem is that really nobody is looking for it," Morgan said.
Morgan, who herself suffers from PIDD, wasn't diagnosed until she was pregnant with her first child and tests were suggesting there was something wrong with her antibodies. Bernet was diagnosed after Dr. Javer became suspicious about her immunoglobulins because she kept coming back and wasn't getting better.
"Usually you expect them to just get better, but she didn't, so that's when we began thinking about other causes and testing her" Dr. Javer said.
The tests came back positive. Bernet had PIDD.
"It was a relief," Bernet said. "To finally know what it was."
Morgan believes Canadian medical schools aren't training students enough on how to spot different immunodeficiency diseases.
"It's like we're talking to a wall," Morgan said when it comes to patients trying to explain their situation.
PIDD trigers different additional illnesses with every patient. It affects each patient differently but the basic elements of the illness are the same in every case.
"If you're not training for it you can't find it," Morgan said. "Really all the doctors are focused on is HIV."
She said the best way to diagnose people suffering from PIDD is to test for it simultaneously with HIV testing.
Ever since the diagnoses Maggie has been making weekly visits to Saint Paul's hospital to get her sinus flushed out with a machine that only Dr. Javer has in B.C. Bernet and other PIDD patients also undergo weekly blood transfusions.
But Bernet believes having to come to the hospital for blood transfusions is not only costly to the province, but dangerous for patients.
"Here we are trying to get better but just being in the hospital makes us vulnerable to catching more diseases," she said.
Saint Paul's hospital introduced a subcutaneous injections program in May 2009 where PIDD patients would have the option of giving themselves blood transfusions at home.
But the head of the program immunologist Dr. Robert Schellenberg said the hospital is eating out of its own research money to fund the at-home blood transfusion packages and they're running out.
"I think we can carry on for six months, I don't know if much more than that," Dr. Schellenberg said.
The hospital has been working with Providence Health and Services to try to get provincial funding for the program.
"Money won't be coming in this year but we're working on a package to pitch to [the health ministry] for next year," Providence spokesman Justin Karasick said.
Bernet has also stepped in, writing letters to Lower Mainland MLA's and B.C. politicians.
"They need to know there are lives at stake and it's not just doctors wanting more money," Dr. Schellenberg said. "It's good if they hear it from the patients too."
But Bernet said she's beginning to lose hope.
"Nobody cares and most people don't understand because we don't look sick," she said.
Bernet's said her condition has worsened to the point where she can hardly leave the house.
"We don't really go out anymore," Bernet's husband Allen Dion said. "It's often too risky to go out because Maggie can catch anything."
Dion said it's an illness that is not only overlooked but also misunderstood.
"We've lost touch with friends, we've lost touch with family. They wonder why she doesn't just take an Advil and feel better," he said.
These days Bernet spends most of her time lobbying and painting. She donates her art to raise money for the at-home blood transfusion program and various charities.
"It's hard to keep going sometimes but I feel like if I don't write letters and try to help then who will?" she said. "After all, it's the squeaky wheel that gets the oil."
Bernet believes it'll cost the province more in the long run to pump money into treating patients with temporary treatments than it would to figure out more about illness itself.
"We need to start by raising more awareness," she said. "We need more awareness."