CANADIAN ADULT CONGENITAL HEART NETWORK


	The Beat Newsletter Archive 2009/2010 TCCCA update Winter 2009 Many things have happened at the Toronto Clinic over the last few months. We have said goodbye to some... + read more CCHA Updates Winter 2009 First ‘Beat Retreat’ camp a big success More than a dozen adult CHD patients – along with a cardiac care nurse... + read more Anxiety Winter 2009 The quiet agony of worry, so far, insidiously confined internally, first in tightness, in shallow breaths, in fearful ‘I wonder’,... + read more Hypertrophic Cardiomyopathy and Genetics Winter 2009 Recently I attended the conference, “Diagnosis and Management of Hypertrophic Cardiomyopathy and Prevention of Sudden Death: The Next 50 Years”,... + read more -------------------------------------------------- Sign-Up for Updates First Name Last Name Email Address Click here to unsubscribe			PRINT ARTICLE Ontario Legislative News – Bill 178 Season: Winter 2009 Submitted By: Dr. Erwin Oechslin, MD Bill 178, an act to proclaim February 14 in each year as Congenital Heart Disease Awareness Day, passed the second reading at the Ontario Legislature and has been sent to Social Policy Committee. The Bill was submitted by MPP Helena Jaczek. There was a 50 (!) minute debate about CHD at the Provincial Parliament yesterday and five Parliament Members delivered very clear and distinct statements: the lives of many children are saved due to great advances in pediatric cardiology and cardiac surgery and 90% of them reach adulthood. There was a statement that many Canadian CHD patients do not have access to high quality care as patients have in GTA: "We must validate the investment that was made for these patients during childhood which allowed them to survive into adulthood. Our investment has to go beyond improving survival: we must invest in research, patient care and education so that CHD survivors do not face premature death, so that long-term complications can treated in a timely fashion and that these survivors can live in good health and enjoy a good quality of life", was a member statement. I was very pleased to hear that lobbying works: the father of one of my patient is a Member of the Provincial Parliament. I presented her the Member Statement given by MPP Helena Jaczek to the Legislative of Ontario in March 2008, the patient took a picture of this statement, mailed it to her father...... and the ball started rolling. I felt in heaven yesterday, there was no negative statement about CHD and I hope the support by the politicians continues. We can be proud and I must congratulate the Members of the Ontario Parliament: I have not heard such statements or a debate in the Swiss Parliament, yet. In the meantime, I more Canadian than Swiss: this was my third visit to the Ontario Parliament yesterday, I never visited the Swiss Parliament. Credit must be given to John MacEachern, President CCHA. He played a major role to make this happen, as well as many other CCHA members. Everyone must remember: "The patients are our best advocates!"