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Opinion Editorial: Building a Successful Rare Disease Strategy is Our Shared Responsibility

November 4, 2022
Rute Fernandes, General Manager, Takeda Canada Inc.

Canada remains one of a few developed countries without a rare disease strategy. To address this concern,  in the 2019 budget the federal government proposed to invest up to $1 billion over two years, starting in 2022-23, with up to $500 million per year ongoing. In doing so, they committed to working with willing provinces, territories and stakeholders to establish a national strategy for drugs for rare diseases.

This comes as welcome news for rare disease patients, who on average wait 6 to 8 years before receiving a correct diagnosis. For them and their loved ones, the journey is arduous. From the first symptom, the journey can include years of visits to primary care physicians, to emergency rooms, to specialists with misdiagnosis, unnecessary surgeries and treatments, often leading to mental health challenges on top of it all.

All of this puts a strain on the patient and caregivers and puts unnecessary costs on health care systems. While our health care system needs more nurses and physicians, we also need to make sure they have the ability to diagnose and treat Canadians with the necessary infrastructure needed to deliver essential care to Canadians.

That is why Canada needs a holistic National Strategy for Drugs for Rare Diseases. One that recognizes that drugs for rare diseases are only one essential part of a robust rare disease strategy. The strategy must also address improved screening, timely diagnosis, data collection and patient and caregiver support.

Creating an impactful National Strategy for Drugs for Rare Diseases is a shared responsibility that requires open, thoughtful discussion and participation from the rare disease community – including patients, health care professionals, industry, associations – as well as the federal, provincial and territorial governments.

As the health ministers engage, I encourage them to discuss how a holistic strategy would have a meaningful impact on rare disease patients and their families. We owe it to rare disease patients and their loved ones to get it right and to make the strategy an urgent priority.

To support the development of an impactful National Strategy for Drugs for Rare Diseases, Takeda Canada has developed the Strategies for Rare Diseases: International Landscape Report, which looks at best practices.

About Takeda Canada Inc.

Takeda Canada Inc. is the Canadian organization of Takeda Pharmaceutical Company Limited (TSE: 4502/NYSE: TAK), a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to discovering and delivering life-transforming treatments, guided by our commitment to patients, our people and the planet. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Rare Genetics and Hematology, Neuroscience, and Gastroenterology (GI). We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines. We are focusing on developing highly innovative medicines that contribute to making a difference in people’s lives by advancing the frontier of new treatment options and leveraging our enhanced collaborative R&D engine and capabilities to create a robust, modality-diverse pipeline. Our employees are committed to improving quality of life for patients and to working with our partners in health care in approximately 80 countries and regions. For more information, visit:  takeda.com/en-ca 


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