Mark Brennan, a radio host from Saint John, New Brunswick, knew that having dark, cola-coloured urine wasn’t normal. It took his doctors months to discover the cause of this strange symptom. In 2004, Mark was diagnosed with paroxysmal nocturnal haemoglobinuria (PNH). Over time, he began to see and feel his body deteriorate and his quality of life diminish.

At the time, he had no choice but to live with the symptoms of haemolysis (the destruction of red blood cells) including blood in his urine, shortness of breath and extreme fatigue, and the fear of developing a life-threatening blood clot. His kidneys became impaired due to continued haemolysis, and he nearly experienced kidney failure. The only treatment available to Mark was steroids, which also took their toll on his body without improving his symptoms. He knew that scientific studies show that without treatment, approximately one‐third of PNH patients do not survive more than five years and about half die within 10 years from the time of diagnosis.

After living with PNH for over seven years, Mark was approved for compassionate funding through the manufacturer for a new therapy called Soliris, a life-saving but costly treatment for PNH, in November 2009. Within days of his first treatment, his painful symptoms were alleviated and his blood levels stabilized.

Prior to the provinces’ agreement in July 2011 to provide public funding for Soliris to PNH patients, Mark was one of the lucky few to receive funding for the treatment, as most PNH patients did not have access to it – either through private insurance or through their provincial drug plans. Though he received the treatment at the time, Mark feared that his coverage would end without warning, and since the New Brunswick government didn’t fund Soliris, he would have no safety net.

Mark played a significant role in the fight for access to Soliris for PNH patients, as he urged the New Brunswick government to ensure that all PNH patients have access to Soliris through public funding.

Mark shares his story in the articles below:

Telegraph-Journal (New Brunswick): May 23, 2011
The Daily Gleaner (Fredericton): May 23, 2011