Implementation Advisory Group (IAG) for the National Strategy for Drugs for Rare Diseases

Dr. Avram Denburg is currently on the Canadian Agency For Drugs And Technologies In Health (CADTH) Board of Directors as an academic member. He is staff oncologist and clinician-scientist in the Division of Haematology/ Oncology at the SickKids, the Hospital for Sick Children in Toronto. He has a Master of Science in Health Policy, Planning and Financing from the London School of Economics and a PhD in Health Policy from McMaster University. Avram’s research centres on the analysis and strengthening of childhood cancer care systems, with specific focus on issues related to pharmaceutical policy and drug access for children in Canada and internationally. His lab at SickKids Research Institute is engaged in projects on health technology assessment (HTA) and cancer drug access in various health system contexts globally. Current priority areas of research include the development of novel approaches for the value-based assessment of pediatric health technologies, including precision cancer therapies; the incorporation of societal values and public preferences into HTA and pharmaceutical policy; comparative analysis of policy approaches to precision cancer therapy regulation and reimbursement; and the analysis of cancer drug availability, cost, and access dynamics in a range of low- and middle-income countries.

Dr. Gail Ouellette, a geneticist and genetic counsellor, is the former founding president of the Regroupement québécois des maladies orphelines (RQMO). She holds a PhD in molecular biology from the Université de Montréal. She was a postdoctoral researcher at the Centre for Human Genetics in Leuven, Belgium, and did research in human genetics at Algène Biotechnologies and Signalgene. She completed a master's degree in genetic counselling at McGill University and worked as a genetic counsellor at the Centre hospitalier universitaire de Sherbrooke. In 2010, she co-founded RQMO with rare disease associations and set up the iRARE Centre (information and support centre for rare diseases). She also has a website and blog dedicated to medical genetics education: Génétique simplement. As a graduate of UQAM's Faculty of Science, she was awarded the Prix Reconnaissance UQAM 2015 for her work in the field of rare diseases.

John Adams is Chair, Board of Directors, of the Best Medicines Coalition, a national alliance of patient organizations seeking timely and equitable access to a comprehensive range of medically necessary drugs and related treatments for all patients in Canada. John is a father to an adult son with Phenylketonuria (PKU), a rare genetic disorder, and is the President and CEO of Canadian PKU and Allied Disorders, which he co-founded. In addition, John’s wife died of ALS and FTD (amyotrophic lateral sclerosis and frontotemporal degeneration). He is a senior fellow of the Macdonald-Laurier Institute focused on health issues, co-chair of the Disability Tax Fairness Alliance, and past Board Chair of the Canadian Organization for Rare Disorders. John is a seasoned management consultant and has worked as a Globe and Mail reporter, chief of staff to an Ontario Cabinet Minister, and was elected to Toronto City Council three times.

Dr. Shawn Bugden is Dean at the School of Pharmacy at Memorial University of Newfoundland and Labrador and an Adjunct Professor at the College of Pharmacy at the University of Manitoba. He took his initial pharmacy training at the University of Manitoba and has taken further post-graduate training at the University of Manitoba, McGill University, the University of Washington and Oxford University. He had a long career in retail and hospital pharmacy management prior to beginning his academic career in 2008. Shawn is also the current Chair of the Board of Directors for the Canadian Pharmacists Association. Shawn has expertise in hospital pharmacy, drug pricing, health policy, pharmacoepidemiology, pharmacovigilance, and pharmacoeconomic evaluation. He has published more than 50 peer-reviewed publications.

Andrew Casey became president and CEO of BIOTECanada in August 2012.  In his role as President & CEO of BIOTECanada Andrew is responsible for the strategic operations of the Association which represents Canada’s biotechnology sector.  As the head of BIOTECanada, he is the lead spokesperson for Canada's biotechnology industry communicating on the industry's behalf with government, regulators, international bodies, media and the Canadian public.

Between 2004-2012 Andrew was Vice President, Public Affairs and International Trade with the Forest Products Association of Canada (FPAC). From 1993-2004 he was the Assistant Vice-President, Government Relations with the Canadian Life and Health Insurance Association (CLHIA). Prior to joining the CLHIA, Andrew worked on Parliament Hill as a political advisor in the office of the Minister of Finance.

Andrew Casey is a native of Montreal, Quebec.  After attending Loyola High School (Montreal) and St. Lawrence CEGEP (Quebec City) he graduated from Carleton University (Ottawa) with a Bachelor of Arts (Political Science).

In his capacity as head of BIOTECanada Andrew also currently serves as Director, Board of Directors, BIOTECanada and Director, Board of Directors, Institute for Research in Immunology and Cancer, Commercialization of Research (IRICoR).

Dr. Chakraborty is a physician certified by the Royal College of Physicians and Surgeons of Canada in Medical Biochemistry and Pediatrics, with a subspecialty in Biochemical Genetics. Throughout his career, he has pursued clinical activities and translational research focused on improving outcomes for people with Inherited Metabolic Diseases and other rare diseases. He joined CHEO in 2003 as a clinician providing ongoing care for patients with Inherited Metabolic Diseases. In 2006 he led the establishment of Newborn Screening Ontario (NSO).  NSO is internationally-recognized and has grown substantially with Dr. Chakraborty as its Medical and Laboratory Director.  Since 2020, he has served as a Senior Medical Advisory for the Laboratories and Diagnostics Branch of the Ontario Ministry of Health. Internationally, he is a member of the ClinGen pediatric actionability working group, was on the organizing committee of the 2020 Association of Public Health Laboratories newborn screening and genetic testing symposium, and served on the 2018 expert advisory panel reviewing the American federal recommended universal screening panel decision process.  Finally, he is a Principal Investigator and co-leads the CIHR-funded Canadian Inherited Metabolic Disease Research Network and INFORM-RARE project. As of November 1, he will be the Chief and Chair of Pediatrics at CHEO and UOttawa.

Dr. Shelita Dattani is the Senior Vice President of Pharmacy Affairs and Strategic Engagement at the Neighbourhood Pharmacy Association of Canada. In this role she leads a team advocating for pharmacy’s evidence based role in delivering accessible, high-quality healthcare and building capacity in public health and primary care.

Sheli is a dynamic pharmacist and a pharmacy leader with over 20 years’ experience in many sectors of the profession, including community, hospital, academia, industry, group purchasing organizations and pharmacy associations. She completed her Bachelor of Science in Pharmacy at Northeastern University and her Doctor of Pharmacy at the University of North Carolina at Chapel Hill.

Sheli maintains a practice in community pharmacy and primary care team based practice. She holds teaching appointments in pharmacy as adjunct faculty at the University of Ottawa, session lecturer at the Memorial University of Newfoundland, and guest lecturer at the University of Waterloo.

Sheli is a sought after speaker in diverse areas of therapeutics, practice and policy and is passionate about her continued engagement as an advisor, consultant, and educator. Sheli is fueled by and committed to contributing to pharmacy’s growing role as an integral health care partner.

Stephen Frank is President and CEO for the Canadian Life and Health Insurance Association (CLHIA). 

Stephen brings over 20 years of successful public and private sector experience to his role. As President and CEO, he advocates on behalf of Canada’s life and health insurance sector for policies and perspectives that contribute to a sound, successful insurance system for the benefit of all Canadians. Stephen also sat on the Board of Directors of the Canadian Drug Insurance Pooling Corporation from 2013 to 2019. 

Prior to joining CLHIA in March 2010, he held senior roles in global transaction banking and financial strategy at a major bank. Prior to that, he worked as an Economist in the Financial Sector Policy branch at the Department of Finance in Ottawa.

Stephen has a Master's of Finance degree from the University of Cambridge as well as a B.A. (Honours) Economics degree from Queen's University.

Declan Hamill is the Vice-president of Policy, Regulatory, and Legal Affairs at Innovative Medicines Canada.

In July 2005, Declan Hamill joined Innovative Medicines Canada, the national association representing the voice of Canada’s innovative pharmaceutical industry.

Mr. Hamill provides advice and counsel regarding legal, trade and compliance issues. He serves as the in-house resource to provide expertise and advice on recent jurisprudence and other legal and IP developments affecting the industry. In September 2016, Mr. Hamill assumed additional responsibility for the regulatory and policy functions at Innovative Medicines Canada.

Mr. Hamill has appeared before several Canadian government bodies and committees, including the House of Commons Industry, Science and Technology Committee, and the Standing Committee on International Trade.

Mr. Hamill is also the Chair  of the Board of Directors of the Stem Cell Network, a Canadian not-for-profit that supports three main objectives: stem cell and regenerative medicine research; training the next generation of highly qualified personnel; and supporting the knowledge mobilization and transfer of stem cell and regenerative medicine research.

Mr. Hamill is a graduate of the McGill University Faculty of Law, and was called to Ontario Bar in 1998. He also holds degrees from York University and from the University of Toronto, and is a graduate of the ICD-Rotman Directors Education Program.

Dr. Bashir Jiwani is Executive Director, Ethics Services, at the Fraser Health Authority.

Recent areas of focus include a framework for equal respect and equitable treatment – responding to the challenges of EDI, allocating financial resources to support COVID-19 response, producing decision-making structures and processes for expensive drugs for rare diseases, and creating a gender-inclusive climate.

Bashir received his BA in Philosophy from McGill University and his MA in Philosophy with a specialty in Bioethics from the University of British Columbia. He received a PhD in Public Health Sciences from the University of Alberta, Canada.

Bashir has served on the pan-Canadian Advisory Panel on a Framework for a Prescription Drug List, Drug Benefit Council for BC Ministry of Health; the Expensive Drugs for Rare Diseases Advisory Committee for BC Ministry of Health; the Core Team for the Aga Khan University Thinking Group on Ethics, Stem Cell Science, and Regenerative Medicine; and as a consultant for the Ismaili Tariqah and Religious Education Board of Canada.

Bashir is President of the Canadian Bioethics Society.

Joanne Jung is Willis Towers Watson’s (WTW) Canadian pharmacy and clinical practice leader. With several decades of pharmacy experience, she leads a national team of pharmacy experts who advise employers on managing pharmacy benefits for employees. As a practicing pharmacist and experienced health and benefits practitioner, Joanne brings a unique combination of expertise and hands-on experience. Joanne has partnered with a broad spectrum of employer, trustee and union groups to optimize drug plan utilization and mitigate costs. She has also advised a wide range of organizations in both the private and public sectors across Canada to design and implement health and benefit management strategies.

Prior to joining Willis Towers Watson, Joanne worked at British Columbia’s largest private insurer leading key innovations to their drug strategy. Also, as a clinical pharmacist she gained critical acclaim for her innovation in developing the clinical practice of hospital pharmacists.

Joanne completed her pharmacy degree at the University of British Columbia followed by a hospital residency at St. Paul’s Hospital. As an industry professional, Joanne has published several research papers and is a frequent speaker at industry events. She is a past member of several Canadian Life and Health Insurance Association committees and has served on a number of national advisory boards.

Dr. Aneal Khan is President of MAGIC Clinic Ltd., CEO of Discovery DNA. His main research interest is to investigate novel methods for the treatment of childhood-onset genetic diseases. As a pediatrician, medical genetics and metabolic diseases specialist, his clinical research has primarily included subjects with inborn errors of metabolism. Dr Khan is currently a principal investigator in multiple studies investigating the role of novel therapies like, gene therapy, and next generation sequencing for mitochondrial disorders, bone imaging in metabolic diseases, metabolic cardiomyopathies and rare disease registries. In 2014, Dr Khan’s team performed the first liver cell transplant for urea cycle diseases in Canada, in 2017 the first in the world gene therapy for Fabry disease, in 2019 the first gene therapy for a urea cycle disease in Canada, and in 2020 the first in the world gene therapy for Gaucher disease. He trained in Medical Genetics at the Hospital for Sick Children in Toronto, working there for a brief periodic in Clinical and Metabolic Genetics, then at the University Health Network, McMaster University, Alberta Health Services and now has his community practice in metabolic and clinical genetics in Calgary, Alberta.

Elizabeth Kwan is a Senior Researcher for the Canadian Labour Congress (CLC). The CLC is Canada’s largest central labour body and speaks on issues of national importance for three million unionized workers across Canada.

As the CLC policy lead on health and health care, Elizabeth works on all the key priorities of strengthening and building the public health care system in Canada. She is active in Parliamentary and government engagements for labour including pharmacare, the national strategy for drugs for rare diseases and the Canadian Drug Agency.

Currently, Elizabeth is actively engaged in key CLC campaigns: Forward Together, Universal Public Pharmacare and the Care Campaign.

Elizabeth champions health justice and equity, working with the intersectionality of inequalities and social-economic factors including racism and hate, low-income, gender, ableism, immigrant status, and food (in)security.

Prior to her tenure with the CLC, she worked with a broad range of health-related organizations including the Health Services at Correctional Service of Canada (CSC), the Children’s Hospital of Eastern Ontario (CHEO), Health Canada's First Nations and Inuit Health Branch (FNIHB), the Public Health Agency of Canada, women and family shelters, community health centres, and immigrant and refugee health service organisations.

Erin Little is the proud mother two beautiful daughters, one who lives with the rare disease cystinosis. She has spent the past twelve years being her daughter’s caregiver while advocating for her medical needs and fighting for access to safe, effective, and affordable drugs. She is the co-founder and President of Liv A Little Foundation, a foundation dedicated to funding better treatments and ultimately a cure for cystinosis. She has a Bachelor of Science degree in Psychology from the University of Marian.

She knows firsthand what is like to be cast adrift in the Canadian health system as a result of an unexpected, life-threatening diagnosis of a family member, with little to no prior relevant experience or knowledge, and she has learned all the hard-won lessons that come from navigating one’s way through that system by sheer force of will and a relentless focus on the needs and best interests of her daughter.  

Erin believes that all humans with rare diseases should have access to treatments that have been proven safe, effective, and affordable.

Bob McLay is the VP, General Manager of Sobi Canada. As GM of Sobi Canada, he oversees all operations and commercial aspects of the business strategy and performance. He had also lead the Immunology Franchise for the US. In that role he was responsible for the commercial process, performance and success for Sobi North America.

For the past several years Bob has served as Chair for RAREi. RAREi is an informal network of Canadian research-based bio-pharmaceutical organizations involved in developing therapeutics for rare diseases. This forum intents to address common public policy issues with a vision to help shape the Canadian health system and policy environment to facilitate patient access to diagnostics and medicines that improve the lives of Canadians with rare disorders.

Bob earned a Master of Business Administration degree in Finance from Auburn University Harbert College of Business in Alabama. While at Auburn, Bob was a graduate assistant football coach for the Auburn Tigers. Prior to that, he received a Bachelor of Science degree from University of Guelph in Ontario. He resides in the Burlington, Ontario.

Sandra Sirrs trained at the University of British Columbia in internal medicine and endocrinology before doing additional training in inherited metabolic diseases. 

She started the first free standing clinic for adults with these disorders in North America in 1999 which has grown to become one of the largest such clinics in the world.  She has worked in the field of rare diseases for more than 2 decades with particular interest in lysosomal storage diseases.  She has been involved in developing both national and international guidelines for drug treatment of a number of different rare diseases and has functioned in an advisory role for both provincial and national regulatory and HTA bodies in the area of drugs for rare diseases. 

She is a clinical professor of endocrinology and metabolism at the University of British Columbia and is a member of the Division of Endocrinology at Vancouver General Hospital which was recently ranked in the top 50 of all academic endocrinology departments in the world. 

Gary is an actuary who has been involved in employee benefit plans and private drug insurance for the past 35 years working for private insurers, a reinsurer and most recently for a third party administrator. He has submitted personal submissions on national pharmacare and drugs for rare diseases to the Hoskins Commission, the Commons select committee on healthcare and Health Canada as well as having been a joint author on submissions by the Canadian Institute of Actuaries and the Third Party Administrators Association of Canada.

A firm believer that all Canadians deserve affordable coverage to approved drugs for rare diseases that are effective for the individual Canadian patient at a price both they and Canada can afford, in particular, without regard to the patient’s family situation, employment status or location; more than a decade ago Gary launched the concept and then chaired the implementation of the Canadian Drug Insurance Pooling Corporation (CDIPC). CDIPC is a voluntary agreement amongst all private insurers to share the cost of expensive drugs under insured private benefit plans, so that no employer has health premiums become unaffordable due to an expensive drug claim by an employee or their dependents.

Durhane Wong-Rieger PhD, is President & CEO of the Canadian Organization for Rare Disorders, Chair of the Consumer Advocare Network, President & CEO of the Institute for Optimizing Health Outcomes and Chair of Canadian Heart Patient Alliance.

Internationally, she is Chair of Rare Disease International, President of Asia Pacific Rare Disease International, Treasurer of United Nations Nongovernmental Organization for Rare Diseases, Chair of Patient Advocates Constituency Committee of the International Rare Disease Research Consortium, Patient Advisor to the APEC Rare Disease Network, member of the Editorial Board of The Patient- Patient Centred Outcomes Research, and member of Health Technology Assessment International Patient / Citizen Involvement Interest Group.

Dr. Wong-Rieger has served on numerous health policy advisory committees and panels, including member of Genome Canada Steering Committee for the Rare Disease Precision Health Initiative and CADTH Real World Evidence Steering Committee. She is a certified Health Coach.

Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada. She is a trainer and frequent lecturer and author of three books and many articles.