An Edmonton business owner and mother of five, Carrie Stogryn had always been energetic and on-the-go. But in early 2013, she began to feel tired, had trouble breathing, experienced hair loss and an increase in migraines, as well as sore muscles and numbness in her extremities. On October 14, 2013, Carrie was rushed to the University of Alberta Hospital where doctors ran a battery of tests and tried to stabilize her. After 29 days in a hospital bed, she was finally diagnosed with aHUS.
Hospitalized for nearly nine weeks, Carrie received 9 blood transfusions, and 591 units of plasma through 29 plasma infusions in an attempt to balance her blood and slow down the disease. However, plasma therapy was only a temporary solution and was discontinued after the initial round of treatments. Plasma is a supportive therapy that has not been proven safe or effective in aHUS. In fact, studies show that within the first year after diagnosis, 65 percent of all aHUS patients die, require dialysis or have permanent kidney damage, despite plasma exchange or plasma infusion.
While Carrie’s condition is now stable, months later she has still has not been able to fully return to work. Carrie fears that a relapse in her aHUS could strike at any time and that complications from a blood clot could potentially take her life.
Should a flare-up in Carrie’s disease occur, her specialist has told her that plasma therapy is no longer an option. Carrie’s doctor has prescribed eculizumab (Soliris), the first and only pharmaceutical treatment approved for aHUS. Having shown greater efficacy than plasma therapy in the prevention and treatment of aHUS, experts believe that eculizumab is on its way to becoming a new standard of care for aHUS. But Carrie’s private insurance won’t cover the cost of the drug and the Alberta government won’t pay for it either – a situation that has Carrie and her family very concerned and frustrated.
In clinical trials, eculizumab has been shown to significantly improve patients’ health and quality of life by blocking the complement system, thereby preventing the progression of the disease. Eculizumab has also been proven safe and effective in recovering kidney function, preventing blood vessel damage and abnormal blood clotting, and significantly improving patients’ health and quality of life. Experts recommend the use of eculizumab as first-line therapy in children with aHUS, and for adults with an unequivocal diagnosis of aHUS. Clinicians also advise that treatment be initiated as early as possible for optimal recovery of kidney function.
Both Carrie and her doctor know that, without access to eculizumab, kidney failure is imminent as the disease will continue to cause progressive damage to her vital organs. Unfortunately for Carrie and other Albertans who rely on public drug programs, the government’s decision to refuse to fund eculizumab for aHUS leaves patients’ lives hanging in the balance. In fact, across Canada, only a handful of aHUS patients are receiving eculizumab through private insurance, and a very few are being funded through exceptional access programs. Without this drug, Carrie risks losing her kidney function and relying on life-long dialysis – a therapy that brings other health risks. She is very aware that she could even lose her life.
Carrie is hopeful that the Alberta government will make eculizumab accessible to her through public funding before it is too late for her or other Albertans who may be living with aHUS. In the short time since her diagnosis, Carrie has immersed herself in information about aHUS, has begun to engage her Member of the Legislative Assembly (MLA), and has even joined aHUS Canada as a member of the board of directors. Her family and community have stepped up to support Carrie in the hopes that eculizumab will soon be made available to all Albertans in need through public funding.
Thank you to Carrie for sharing her story. If you are interested in sharing your story about how aHUS has impacted your life, please contact us at firstname.lastname@example.org.