by Tim Kelly, Vaughan Citizen
The recent approval by Health Canada of a drug to treat a rare and chronic condition that affects less than 60 Canadians could save a Vaughan boy’s life.
Atypical hemolytic uremic syndrome (aHUS), leaves a part of the immune system uncontrolled and always active, attacking unhealthy and healthy cells, which can cause blood vessel damage, abnormal blood clotting and progressive damage to major organs, leading to heart attack, stroke, kidney failure and death.
The approval of Soliris to combat the disease has come as a big relief to Vaughan’s Sonia DeBortoli, whose son, Joshua, 11, was diagnosed with aHus last March.
Joshua experienced kidney failure, internal bleeding and a blood clot in his groin as a result. He endured several painful hours of daily dialysis and plasma therapy and was on prednisone and oxygen.
However, taking part in a clinical trial for Soliris restored Joshua’s health so he no longer needed other therapies.
“Our whole world changed when Joshua was given Soliris. We now believe he has a long and healthy future. He is back at school, taking karate lessons and playing soccer,” Ms DeBortoli said. “We got our little boy back, he got his life back and we want the same for anyone who has to deal with this rare and devastating disease.”
Solaris advocates hope government agencies will swiftly push it through the bureaucratic chain.
The hope is the common drug review will recognize the urgent need for access to Soliris and provincial governments will act swiftly to provide reimbursement to patients who are in urgent need of this life-saving treatment, said Tracy MacIntyre, a founder of aHUS Canada whose daughter lives with aHUS.
“Immediate access to the drug would have a profoundly positive impact on the few Canadians living with aHUS, while any delay in funding treatment could lead to devastating consequences.”