Kelly Robinson

To provide funding for the Canadian Collaboration to Cure ALS, to establish a coordinated national research ecosystem through which every Canadian living with ALS can participate in, and benefit from, cutting-edge science that will accelerate discoveries by Canadian researchers, advance understanding of the disease, and enable the development of therapies to treat this devastating terminal illness with greater precision. Sources of funding are to be determined. Policies or programs related to access to care and potential treatments for the ALS Community. Amendment to the compassionate care program to make it more accessible to caregivers and to increase the length of the benefit.

Support input regarding Canada’s pharmaceutical sovereignty. Support input into the consultation on draft guidance on decentralized clinical trials. Support input into the consultation on Canada Gazette, Part I, Volume 159, Number 51: Order Providing for Reliance on Decisions of, or Documents Produced by, Foreign Regulatory Authorities in Respect of Certain Drugs. Share patient groups perspectives on drug pricing and access to medications/vaccines/clinical trials, specifically regulations and guidelines related to the Patented Medicine Prices Review Board, along with feedback on their policies and practices, and processes related to PMPRB. Recommend the creation of a Patient Ombudsman. Recommend the creation of a Chief Patient Officer. Recommend that the government and regulators adopt proactive approaches to communicating drug supply and shortages issues and measures to address them. Provide input on the government's response to tariffs and other trade measures as they relate to pharmaceuticals and related treatments, including their ingredients, as well as other health products and devices. Also recommend providing financial relief to patients impacted by price increases. Provide input on pharmacare. Provide input on a national strategy for drugs for rare diseases. Learn more about and provide feedback on plans around COVID-19 vaccines, including protein based ones. Ensure timely access to a comprehensive range of medicines, vaccines and related treatments and protect access to clinical trials, while helping to rebuild domestic capacities to develop and make drugs and vaccines. Ensure patient organizations are consulted and provide feedback on policies, processes, patient representation and other initiatives from Canada's Drug Agency. Discuss Canada's response to the proposed bulk importation of medications from Canada to the United States.

Increased federal investment in health-related research. Advocating for implementation of Canada's drugs for rare diseases strategy. With respect to disability, we advocate for recognition of and supports for people with episodic disabilities. 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. 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. Improving access to precision medicines for Canadians with cystic fibrosis and other rare diseases. Advocating to stop the regulatory changes to the Patented Medicines Price Review Board (PMPRB).

Contribute insights to optimize the regulatory approval for generic drugs in order to increase the efficiency of drug approvals.

ADVOCATE FOR IMPROVED AWARENESS, PREVENTION AND MANAGEMENT OF WOMEN'S HEART AND BRAIN HEALTH RISK FACTORS THROUGH BILL S-243, AN ACT TO ESTABLISH A NATIONAL FRAMEWORK FOR WOMEN'S HEALTH IN CANADA ADVOCATE FOR A MODERNIZED CHARITABLE TAXATION FRAMEWORK THAT STRENGTHENS CHARITIES AND THEIR ABILITY TO MOBILIZE RESOURCES FOR THE BENEFIT OF CANADIANS. FINALIZE REGULATIONS TO RESTRICT VAPE FLAVOURS (INCLUDING MINT/MENTHOL); INTRODUCE PLAIN AND STANDARDIZED PACKAGING FOR VAPING PRODUCTS; INCREASE TOBACCO AND VAPE TAXES; IMPLEMENT A TOBACCO COST RECOVERY FEE; PROTECT EXISTING NICOTINE POUCH REGULATIONS; BAN INTERNET/ONLINE SALES FOR TOBACCO AND E-CIGARETTES; PROHIBIT THE SALE OF TOBACCO PRODUCTS AMONGST INDIVIDUALS BORN BEFORE A DETERMINED YEAR; INCREASE THE MINIMUM LEGAL AGE OF SALE FOR TOBACCO AND VAPING PRODUCTS TO 21 YEARS OF AGE. SUPPORT POLICIES THAT ELIMINATE FINANCIAL BARRIERS TO SPORT PARTICIPATION FOR CHILDREN AND YOUTH, WHILE ENSURING SPORT PARTICIPATION FUNDING IS ROLLED OUT IN AN ACCESSIBLE, EQUITABLE, AND INCLUSIVE MANNER. ADVOCATE FOR GOVERNMENT ACTION TO REDUCE THE CONSUMPTION OF, AND HARMS ASSOCIATED WITH, ULTRA-PROCESSED FOODS. ADVOCATE FOR AND FUND EQUITABLE ACCESS TO PALLIATIVE CARE PROGRAMS FOR CANADIANS, INCLUDING EQUITY-SEEKING GROUPS. INTRODUCTION OF A NATIONAL PHARMACARE PROGRAM IMPLEMENT REGULATIONS TO RESTRICT COMMERCIAL MARKETING OF UNHEALTHY FOODS AND BEVERAGES TO CHILDREN IMPLEMENT A TAX ON SUGARY DRINKS. REVENUES FROM SUCH A TAXATION STREAM SHOULD BE USED TO SUBSIDIZE HEALTHY EATING INITIATIVES FUND PUBLIC AWARENESS FOR IMPROVED USE OF DEFIBRILLATORS AND CPR. ADVOCATE FOR A TAX-EXEMPTION ON THE SALE OF DEFIBRILLATORS. ENSURE THAT THE DEDICATED FEDERAL ACTIVE TRANSPORTATION INFRASTRUCTURE FUND BECOMES A PERMANENT ENVELOPE IN CANADA'S INFRASTRUCTURE FUNDING.

Regulations, policies and programs related to the reimbursement recommendations decision-making process and framework done by the Canadian Agency for Drugs and Technologies in Health (CADTH)/Common Drug Review as well as the review times and processes conducted by Health Canada for the purpose of obtaining a notice of compliance. National Strategy for Drugs for Rare Disease as it relates to separate regulatory pathways for drugs for rare diseases and the government strategy. Monitoring and engaging the Government and Parliamentarians on policies and programs that would provide greater clarity and predictability in the tax outcomes and improvements to tax measures such as the Manufacturing & Processing (M&P) credit and the Scientific Research & Developmental (SR&ED). Common Drug Review Policies as it relates to reimbursement recommendation decision-making process and framework. Federal Public Drug Plans, with respect to the reimbursement of therapeutic products for Federal plan beneficiaries Policies related to the National Strategy for Drugs for Rare Disease as it relates to separate regulatory pathway for drugs for rare diseases and the government strategy. Policies related to Subsequent Entry Biologics (SEBs) pertaining to Draft Guidance for Sponsors; Information and Submission requirements for SEBs, regulations and intellectual property policies, naming conventions Monitoring and engaging on the Government’s commitment (Budget, SFT, Fall Economic Update) to create a national strategy for drugs for rare diseases; create a new Canadian Drug Agency; and the implementation of national, universal pharmacare. Pharmaceutical policy and any negotiations of a Health Accord or agreement with the Provinces/Territories, as it relates to National Pharmacare/universal or catastrophic drug coverage, Drug policies & Pricing. The Department of Innovation, Science and Economic Development and the Innovation Agenda for the life sciences sector: policy or program initiatives to support life science research and development conducted in Canada and manufacturing capability, and as it relates to Canada’s Biomanufacturing and Life Sciences Strategy. Monitoring and engaging the Government and Parliamentarians on policies and programs related to Canada's biomanufacturing and life sciences sector strategy National Pharmacare (Bill C-64, An Act respecting pharmacare) Canadian Environmental Protection Act and Regulations in respect of modern, science-based regulations to reflect rapidly changing new technologies. Patent Act as it relates to reporting requirements and pricing guidelines, and the protection of intellectual property in biopharmaceutical products. Income Tax Act as it relates to biopharmaceutical industry. Annual federal Budgets and Budget updates as it relates to the biopharmaceutical industry, and related updates and to Federal budgetary policy. Discussions around the World Trade Organization consideration of a TRIPS Patent Waiver - Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPs) with respect to the protection of data, Access to Medicines, and TRIPs "flexibility". The Food and Drugs Act, or the Export and Imports Permits Act (Export Control List) or any other legislative and regulatory means in order to protect the Canadian supply of drugs in light of importation legislation in the United States. Standing Committee on Finance (FINA) as it relates to pre-budget consultations. Pharmaceutical intellectual property protection as it relates to international trade agreements Patent Act and Patented Medicines (Notice of Compliance) Regulations, as it relates to the regulation of intellectual property, approval for therapeutic products, changes to modernize the Right of Appeal House of Commons Standing Committee of Science and Research (SRSR) as it relates to Science in Canada and/or any other pertinent legislative proposal before the committee House of Commons Standing Committee of Industry and Technology (INDU) as it