In March of 2013, Vancouver’s Tracy Murray began to experience severe fatigue, nausea, and abdominal pain and swelling. Concerned about these symptoms, she went to numerous walk-in clinics and was sent for blood tests to find out what was wrong. By the end of May 2013, Tracy went to the hospital and was immediately admitted to the emergency room, and doctors released fluids from her stomach through a pump to ease her pain. Over the following days, she underwent a series of tests, x-rays and scans, and doctors discovered a blood clot in her liver and rushed Tracy to Vancouver General Hospital.
Tracy was diagnosed with Budd-Chiari syndrome, a complication that many PNH patients experience. In Budd-Chiari, blockages occur in the hepatic veins, which drain the liver. Tracy was put on warfarin (a blood thinner) and had a stint surgically inserted into her hepatic vein to prevent additional clots from forming. Shortly after this episode, and after undergoing numerous tests, Tracy received her diagnosis of PNH (paroxysmal nocturnal hemoglobinuria), which explained her recent health issues.
By July 2013 – only two weeks after returning home from the hospital – Tracy was readmitted to hospital with another severe clot and swelling. She underwent a second operation to widen the stint in her hepatic vein.
Thanks to private medical coverage through her employer, Tracy was able to begin treatment with Soliris, the life-saving medication proven to return patients’ lives and health to normal. Tracy received her first life-changing infusion on August 4, 2013 – and hasn’t looked back.
Now married to a loving, supportive husband and working as a travel agent, she says her energy levels have quadrupled. She no longer experiences the extreme exhaustion or the constant worry that a blood clot could instantly end her life. “I can finally function again,” she says. Because of the amount of damage and the number of surgeries her body endured, she admits that her recovery has taken longer than is common. “I certainly consider myself lucky, but it did take me a while to get ‘normal.’”
Today, Tracy is able to enjoy a fulfilling personal and professional life, and loves to educate others about PNH and serve as a role model to other patients. While she needs one more surgery to address a hernia, she does worry about her ability to access Soliris in the future.
Tracy continues to receive Soliris through private insurance through her employer, but she knows that this coverage may not last forever. “I worry about what might happen to me if my employment or funding situation were to change,” she says, “I hope that I won’t ever have to face losing access to this life-saving medication.”
Like all PNH patients in Canada, Tracy needs the assurance that the B.C. government will make this treatment accessible to her should she ever require it through public funding. “While Soliris is available through government funding, if the time comes, I need to be sure that I would seamlessly transition to accessing the treatment through this means.”
Tracy is grateful for the funding support B.C. Pharmacare has provided to PNH patients since Soliris first became accessible in July, 2011. She is calling on the province to maintain its commitment to PNH patients so that no one is left with the stress or anxiety that accompanies any uncertainty around accessing this transformative treatment.