- Soliris is shown to restore life expectancy back to that of a normal person -
TORONTO, Dec. 7 /CNW/ - The Paroxysmal Nocturnal Haemoglobinuria (PNH) patient community welcomes study results presented yesterday at the 2010 American Society of Hematology (ASH) meeting in Orlando, Florida. Results of the new study show that long-term treatment with Soliris - the first and only treatment for PNH that effectively prevents haemolysis - allows a patient's life expectancy to return to that of a healthy person.1
"These study results reinforce the message that PNH patients and the medical community have been trying to convey to the provincial governments for almost two years now," said Barry Katsof, president of the Canadian Association of PNH Patients. "Soliris (eculizumab) works, and there is simply no excuse for leaving PNH patients to die prematurely, especially when there is a treatment available that will allow them to live normally."
PNH is a very rare and debilitating acquired disease affecting the blood and major organs. It develops without warning, usually when patients are in the prime of their lives. It is characterized by haemolysis (the destruction of red blood cells) which can lead to life-threatening blood clots, kidney disease, pulmonary hypertension and other catastrophic consequences. 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.
Various other studies have shown that patients with PNH who received Soliris experienced a number of benefits, including an immediate and sustained reduction in chronic haemolysis.2 The medication also reduces blood clots,3 improves fatigue levels and overall quality of life while significantly reducing the need for transfusions. Although approved almost two years ago by Health Canada, the few patients who are suffering with PNH are still unable to access Soliris because provincial drug programs are not funding this life-saving treatment. Canada is one of the only industrialized countries that does not yet ensure patient access to Soliris.
"As a physician, it is frustrating to know that a safe and effective life-saving medication exists, but is kept out of reach to patients who depend on government drug programs," said Dr. Ian Chin-Yee, Chief of Hematology at the London Health Sciences Centre and Professor of Medicine at the University of Western Ontario."These study results add to the existing body of evidence that provincial governments across Canada need to act upon now to ensure that patients with PNH will live out normal lives."
Only weeks ago, the lack of public funding for Soliris left Lucas Maciesza, a 26-year-old patient of Dr. Chin-Yee's, lying near death in hospital. Luckily, the London Health Sciences Centre found the money in its budget to pay for two doses of Soliris.
"In less than a day, Soliris gave me the strength to get up from my deathbed and walk around the hospital ward," said Lucas Maciesza, 26. "It saved my life - but unfortunately, once discharged from hospital, my future health rests on this government decision."
Another patient in North Bay found herself in Lucas' situation earlier this year. After her hospital initially covered Soliris, she was granted access through the province's Exception Access Program. Without a government decision, however, Lucas' health will deteriorate yet again. Meanwhile, there are other PNH patients across the province waiting without treatment for a government decision. "For some patients, it is already too late," said Katsof.
"This ad hoc method of caring for patients is completely unacceptable, and as the Premier of Ontario said to media last week, 'there must be a better way'," said Katsof. "This peer-reviewed data confirm that Soliris must be accessible to all PNH patients whose lives depend on this treatment. There is no time to waste."
About the Canadian Association of PNH Patients
The Canadian Association of PNH Patients was founded in 2009.The Association's purpose is to facilitate the introduction of patients affected by PNH to each other, increase the public's awareness and understanding of this disease and to advocate for the best possible care and treatment for patients in both the public and private sectors.
1 Kelly RJ, Hill A, Mitchell LD, Richards SJ, Arnold LM, Valters GL, Cullen M, Cohen DR, Gregory WM, Hillmen P. (2010, December). Long Term Treatment with Eculizumab In Paroxysmal Nocturnal Hemoglobinuria (PNH): Sustained Efficacy and Improved Survival. Poster session presented at the 52nd ASH Annual Meeting and Exposition, Orange County Convention Center, Orlando, FL.
2 Brodsky RA, de Castro C, Schrezenmeier H, Risitano AM, Schubert J, Maciejewski JP, Duehrsen U, Luzzatto L, Muus P, Szer J, Socié G, and Hillmen P. (2010, December). Long Term Safety and Efficacy of Sustained Eculizumab Treatment In Patients with Paroxysmal Nocturnal Hemoglobinuria (PNH). Poster session to be presented at the 52nd ASH Annual Meeting and Exposition, Orange County Convention Center, Orlando, FL.
3 Hillmen P, Muus P, Duhrsen U, Risitano AM, Schubert J, Luzzatto L, et al. Effect of the complement inhibitor eculizumab on thromboeembolism in patients with paroxysmal nocturnal haemoglobinuria. Blood. 2007; Dec 1; 110(12):4123-8.
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