Not only is investing in health research critical and key to increasing benefits to the public, but we also recommend that federally funded research meaningfully engage patients in setting health research policy. We believe that federal research funding programs should be informed by the perspectives of patients, their caregivers and health care providers.
Health research is essential to addressing unmet patient needs by furthering our understanding of diseases and how to cure and care for those living with them. With their lived experiences, patients provide a unique perspective on the current state of clinical care that must shape the health research agenda moving forward. As such, the perspective of patients should be embedded within the health research agenda.
We recommend that the federal government implement research agenda priority-setting approaches that include patients and health charities across granting programs. Health charities are leaders in this area and have extensive experience in using a variety of mechanisms to help shape the agenda, including direct engagement with patients and international collaborations.
The MS Society has taken big steps to engage with diverse stakeholders in the MS community to develop a research priority agenda. This happened through a series of discussions that took place across the country with the intent of understanding their experiences and perspectives. This was instrumental in mapping out our research priorities, and we continue this ongoing engagement today.
At the same time, we are continually engaging the MS community directly in our research programs, including having them involved in the research decision-making process. It is through this forum that we have seen thoughtful discussion on the importance of research from someone with lived experience. For the scientist, it is a reminder that the work they are doing has a direct impact on those living with MS and their families. The discussions we have witnessed have brought a richness to our review process and have been invaluable for both the scientist and the person affected by MS.
As we mentioned earlier, Canadians affected by MS believe research is key to new treatments and ultimately a cure. Therefore, it is imperative that individuals have access to new and emerging therapies that can improve health outcomes or even cure diseases. Today there are 14 disease-modifying therapies approved in Canada for people with relapsing forms of MS. Ocrevus, a treatment for early primary progressive MS, was conditionally approved in Canada in February 2018. This is the first time that a treatment targeted at progressive MS has been made available to Canadians.
The MS Society believes strongly that a population health perspective may not reflect the needs of individual patients, especially as it relates to a unique disease like MS. In MS, no two people have the same course of the disease or respond in the same way to the same medication. We also know that early intervention is vital to avoid many of the long-term economic and personal costs that result from unnecessary irreversible disability. Literally, for brain health, time matters in MS.
We need to translate these advances in research into better outcomes for Canadians living with MS and their friends and family. We recommend that the federal government ensure timely and affordable access to all Health Canada-approved treatments for MS. Additionally, we believe that people living with MS and their unique perspective need to be proactively engaged throughout the drug review process, from Health Canada to the pan-Canadian Pharmaceutical Alliance.
In closing, we want to reiterate the importance of investing in federally funded research while recognizing the unique role health charities and patients have in the health research ecosystem. By all of us working together, we can achieve better outcomes for Canadians in accessing medicines.
Thank you for this opportunity to speak.