Lobbying Information
Subject Matters
- Health
- Justice and Law Enforcement
- Research and Development
- Science and Technology
- Taxation and Finance
Subject Matter Details
Grant, Contribution or Other Financial Benefit
- In terms of research and development, we lobby for support of cystic fibrosis research initiatives that improve the health and wellness of Canadians living with cystic fibrosis.
- In terms of science and technology, we work toward the development of precision and personalized medicines that target the basic defect of cystic fibrosis. We are exploring how the federal government may support these efforts through partnership and funding.
- Increased federal investment in health-related research. We worked with the Health Charities Coalition of Canada (HCCC) to draft content for a press release urging the federal government to invest more in basic science in Canada.
Policies or Program
- Advocating for the use of precision medicine tools in access to medicines decision-making processes.
- Common Drug Review, importance of meaningful public/patient input into the drug review process
- Encouraging the development of a rare disease strategy in Canada (similar to the policies for rare diseases in Europe and the United States).
- Improving access to precision medicines for Canadians with cystic fibrosis and other rare diseases.
- Participating in consultations on national pharmacare
- With respect to Health, we advocate for access to cystic fibrosis (CF) medicines and treatments, the development of a rare disease strategy, and for improved access to disability supports for people with CF. This includes any funding required to support the development and implementation of these policy and legislative proposals. The exact amount of funding has yet to be established and would involve further discussions with government officials.
- With respect to disability, we advocate for recognition of and supports for people with episodic disabilities.
Regulation
- Health Canada with respect to the regulation of pancreatic enzymes used in the management of cystic fibrosis. Recommend product should be listed on Schedule F to the Food and Drugs Regulations.
- Participated in consultations on regulatory changes to the Patented Medicines Price Review Board (PMPRB) and provided written submissions.
Communication Techniques
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Written communication
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Oral communication
The lobbyist has arranged or expects to arrange one or more meetings on behalf of the client between a public office holder and any other person in the course of this undertaking.
Government Institutions
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Canada Revenue Agency (CRA)
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Canadian Institutes of Health Research (CIHR)
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Finance Canada (FIN)
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Health Canada (HC)
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House of Commons
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Patented Medicine Prices Review Board (PMPRB)
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Prime Minister's Office (PMO)
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Public Health Agency of Canada (PHAC)
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Senate of Canada
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Statistics Canada (StatCan)
Client Details
Government funding
End date of the last completed financial year:
2019-01-31
List of Government Funding
|
Government Institution
|
Funding Received in Last Financial Year
|
Funding Expected in Current Financial Year
|
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British Columbia Gaming
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$50,452.86
|
Yes
|
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British Columbia Ministry of Health
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$105,979.64
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Yes
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Client Contact Information
Address:
2323 Yonge Street
Suite 800
Toronto, ON M4P 2C9
Canada
Telephone number:
416-485-9149
Ext.
238
Web address:
https://www.cysticfibrosis.ca/
Client representative
Kelly Grover, President and Chief Executive Officer
Parent Company Information
Cystic Fibrosis Canada / Fibrose kystique Canada is not a subsidiary of any other parent companies.
Coalition Members Information
Cystic Fibrosis Canada / Fibrose kystique Canada is not a coalition.
Individual, organization or corporation with a Direct Interest Beneficiary Information
The activities of Cystic Fibrosis Canada / Fibrose kystique Canada are not controlled or directed by another individual, organization or corporation with a direct interest in the outcome of this undertaking.
Subsidiary Beneficiary Information
Cystic Fibrosis Canada / Fibrose kystique Canada does not have any subsidiaries that could have a direct interest in the outcome of the undertaking
Lobbyist Details
Muhammad Ali
|
No public offices held
Business address:
Suite 1115
50 O'Connor Street
Ottawa,, ON K1P 6L2
Canada
Telephone number:
613-238-4371
Fax number:
613-238-4371
Consultant Firm and Address
Firm:
Hill+Knowlton Strategies / Hill+Knowlton Stratégies
Address:
Suite 1115
50 O'Connor Street
Ottawa,, ON K1P 6L2
Canada
Telephone number:
613-238-4371
Fax number:
613-238-4371
