Advocating for Access to Medications for Cystic Fibrosis

July 28, 2015
Hosted by Dr. Gordon Atherley

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Episode Description

Chris MacLeod is a Partner in the law firm Cambridge LLP, He also has Cystic Fibrosis and chairs the Canadian Cystic Fibrosis treatment Society. He talks about his life as a prominent lawyer living with cystic fibrosis and his work as the chair of the Society. He explains his success in advocating for recognition of the new cystic fibrosis medication, Kalydeca. He describes what he sees as most challenging of the challenges associated with access, disparity, and inequity as these relate to medications of demonstrable value in the treatment of cystic fibrosis. He highlights ways in which advocacy confronts the challenges he identifies. He says what more he would like to do through the Canadian Cystic Fibrosis treatment Society and to see done by others to strengthen advocacy for access to cystic fibrosis medications. He comments on the value to the cystic fibrosis community of archiving more discussions like the present one.

Family Caregivers Unite!

Archives Available on VoiceAmerica Variety Channel

Family caregivers are the people who provide care to partners, parents, children, brothers, sisters, cousins, friends, neighbors and even co-workers. They are the people who provide care when everyone else has gone home. They are the people who organize the functioning of the home for the person with special needs, and for the family as a whole. They are the coordinators of care, the managers of appointments, the preventers of loneliness, and the makers of decisions even to the point of Power of Attorney. And they are so often people who themselves are burdened with their own health challenges and who may be in only marginally better health than the persons to whom they are providing family caregiving.

Dr. Gordon Atherley

Dr Gordon Atherley holds the British equivalent of the Canadian PhD and MD degrees, and LLD, Honoris Causa, from Canada’s Simon Fraser University. His awards include Fellow of the Royal Society of Arts, UK. His medical specialties are occupational medicine and public health.
As first President and Chief Executive Officer of the Canadian Centre for Occupational Health and Safety, the Canadian equivalent of the US National Institute of Occupational Safety and Health, he led the creation of Canada’s electronic information service in occupational health and safety, now used in more than 40 countries.
In academia, he held senior, tenured, full-time positions, including departmental chair, in university faculties of physics, engineering, and medicine. He is the author of a textbook and numerous articles and publications.

Since retiring from medical practice, he’s built up Greyhead Associates, which critically researches the safety, effectiveness and fairness of health services for persons with special needs.
Through Virtual Care International, a company of which he’s President, he’s involved in providing sensible technology to family caregivers to help them with their responsibilities, workloads, and concerns.
Now an activist, he urges family caregivers to unite because, more and more, it’s not just their families who depend on them, it’s also the healthcare system as a whole, as it struggles to meet more and more needs of more and more people.

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