In early 2021, Life Sciences Ontario (LSO) released a white paper outlining the five key strategic pillars essential to creating an integrated strategy for managing rare diseases in Ontario.
The COVID-19 pandemic has given people all over the world a glimpse of what it’s like to live in fear of a disease for which there is no cure. But that has been the reality for years for millions of Canadians, and their families, affected by rare diseases.
“Just as vaccines are helping ease the worries of the pandemic, we are at the verge of a new and promising era for treating people with rare diseases — primarily due to the great advances made in recent years in medicine’s understanding of the human genome and how to treat and even cure diseases at the genetic level,” says Dr. Jason Field, President and CEO of Life Sciences Ontario.
In early 2021, Life Sciences Ontario (LSO) released a white paper outlining the five key strategic pillars essential to creating an integrated strategy for managing rare diseases in Ontario that provides better and cutting-edge diagnosis and care for patients while building the life sciences sector as a vital pillar of a prosperous and growing economy.
Ontarians need the government, policymakers, patients, and industry partners to come to the table and lead the way in helping citizens who are impacted by rare diseases while also energizing and encouraging a vital sector of the province’s economy — the life sciences. This can be achieved by focusing on the following five strategic pillars:
1. Build a workable system for patients that is driven by facts and data.
The system for rare disease treatments needs to be attuned to the needs of and workable for all the players — patients, governments, the health system, researchers and their institutions, and the industry.
2. A clear, efficient, and patient-friendly health regulatory system.
Treatments for rare diseases require separate and tailored systems and rules for clinical evaluation, regulatory approval, emergency drug access, health technology assessment and access processes that put prompt but safe access to patients as the top priority.
3. Accelerated funding for rare diseases diagnosis, treatments, and care.
The health system must be structured and resourced to provide patients with better access to testing and diagnosis services, the best treatments that might help them and supportive care and services that can alleviate suffering and uncertainty.
4. Make managing rare diseases an economic development strategy.
Spending on health care and rare diseases needs to be reconsidered — not just as a cost to be borne grudgingly and restricted, but as an investment that is a key tool for economic development, contributing to prosperity and better health.
5. Integrate Ontario’s rare disease strategy with other health initiatives and the Canadian Rare Disease Strategy.
Ontario cannot act alone or in isolation. Its rare diseases strategy must fit seamlessly into and for greater economic benefit with national programs, as well as initiatives to address other major health challenges such as cancer and public health protection measures.