When the FFB was founded in 1974, little was know about blinding eye diseases, and even less about the genetic factors underlying inherited forms of blindness.
Today that landscape has shifted enormously: we’ve pinpointed many—though not all—of the genes involved in degenerative vision loss, and have a much clearer picture of the biology of the human eye. And treatments are progressing rapidly as well: late last year, for instance, the FDA approved the first ocular gene therapy.
That’s incredible, you may be thinking, but what does scientific progress have to do with advocacy?
Put simply, it’s not enough for us to only advance the science of eye diseases. We’ve been doing that for over 40 years with great success, but for that research to have an impact, we need to advocate for innovative ways to connect patients to the treatments and cures that are now emerging.
In other words, vision science and vision policy are codependent: we need good science to make policies relevant, and we need good policies to ensure science makes a tangible difference in the lives of patients.
Our efforts in this area are already underway.
In Toronto this April, we met separately with MPPs Jeff Yurek and Bill Walker (pictured below) to discuss the need for new policies in vision health. Among other things, such policies could provide better access to treatments for age-related macular degeneration (AMD), diabetic macular edema (DME), and other widespread diseases. Distressingly, our research has found that up to a quarter of Canadians living with DME aren’t receiving available treatments, even if their physicians have recommended it.
I also had the opportunity to travel to Edmonton last month, where I had productive meetings with Chad Mitchell, the Executive Director of the Pharmaceutical and Health Benefits Branch of the Ministry of Health, Justin Riemer, the Assistant Deputy Minister of the Innovation and Strategic Operation Division of the Ministry of Health, and Dr. Chris McCabe, the CEO of the Institute of Health Economics. They shared valuable insights into health policy and highlighted some of the incredible innovations being developed in Alberta, such as the Real World Evidence Consortium, a centralized hub of resources, expertise, and data that will facilitate collaboration among researchers and health professionals.
I was also privileged to sit down with the Honourable Sarah Hoffman, the Minister of Health in Alberta. She cares about patients and is committed to increasing access to treatments; we agreed to explore ways to collaboratively address gaps in vision health and bring treatments to market.
A central theme ran through these meetings: science can’t exist in a bubble. We need effective policies that will give Canadians equitable access to emerging treatments—the products of science.
That’s a key takeaway. We’ll keep paving the way for this kind of policy innovation, and we’ll continue building relationships that enable us to be successful. I look forward to keeping you up-to-date.