Thursday, May 30, 2024

John Adams

: Senior Fellow

Expert Overview

John Adams is a seasoned management consultant with a current focus on advocacy for unmet patient health needs. He has extensive experience in public policy, governance and senior management. A frequent author and commentator on health-related public issues, he is a senior fellow at the Macdonald-Laurier Institute.

Three health care issues changed his life as a child, parent and spouse. When he was nine, his mother was near death and agreed to a risky experiment, becoming the first person in Canada to survive open-heart surgery. She had that procedure 3 times, extending her life by 15 years.

As a parent, he has an adult son with a rare genetic disorder phenylketonuria (PKU) which is a brain-threatening. That son participated in a clinical trial in 2007 in the USA for the first drug to treat PKU and was the first patient to receive the drug in Canada under the Special Access Program of Health Canada. That son is an example of the many people outside the USA who benefit from the US Orphan Drug Act of 1983, responsible for many miracle drugs and the first of its kind in the world. Canada still lacks an Orphan Drug Act or equivalent.

John is co-founder, CEO and President of a Canadian non-profit (CanPKU) and a founding trustee and board chair of a global charity, the Global Association for PKU (GAP).  Their missions are to improve the lives of people living with PKU and their families. John is a published author and lay expert in the modern miracle of screening newborns for rare inherited conditions to achieve early diagnosis and early interventions for best possible outcomes. PKU was the reason for starting most newborn screening programs in the 1960s. It saved his son from permanent brain damage.

As a spouse, he became principal caregiver for his wife, Marita, as she developed complex neurologic and behaviour symptoms, was diagnosed with metastatic breast cancer and became a quadriplegic.  Diagnoses of two kinds of neurodegeneration: amyotrophic lateral sclerosis (ALS) and frontal-temporal degeneration (FTD) came at autopsy. He is an advocate for ALS and FTD, both need effective therapies.

John also volunteers as Board Chair of the Best Medicines Coalition (BMC), a national non-profit of 29 patient organizations, which together represent millions of Canadian patients. The mission of BMC is to help ensure timely access to medicines that meet patient needs and that are safe and effective. BMC is engaged in current issues of national pharmacare, drug access, affordability, supplies and shortages, COVID-19 issues, price controls on medicines, health technologies assessment, capacity building and regulatory reform. Previously he served ten years on the board of the Canadian Organization for Rare Disorders.

He is also co-chair of the Disability Tax Fairness Alliance and, as a hobby, represents individuals unjustly denied the Disability Tax Credit by the Canada Revenue Agency. As a taxpayer’s legal agent, he has conducted 18 appeals to the Tax Court of Canada, all successful.

John was born and raised in Toronto graduating from York University with a degree in political science, 1970; he first worked as a reporter for The Globe and Mail, 1971-1975; then as chief of staff to an Ontario Cabinet Minister, 1977-1981; elected to Toronto City Council three times, 1991-2000 including serving as Budget Chief, 1993. His track record includes being the only Budget Chief in +60 years to reduce property taxes. While on Council, he served on many boards, including Toronto Public Health, Toronto Economic Development, Toronto District Heating Corporation, Toronto and Region Conservation Authority, Toronto Harbour Commission and as a trustee of Canada’s largest health sciences centre, the University Health Network.

John is father of four adult children, grandfather to one and lives in Toronto and Ajijic, in central Mexico overlooking the largest lake in that country.

John Adams's work for MLI

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