THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, October 24, 2024
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 11:30 a.m. [ET] to study Bill C-284, An act to establish a national strategy for eye care.
Senator Ratna Omidvar (Chair) in the chair.
[Translation]
The Chair: I am Ratna Omidvar, senator from Ontario.
[English]
I am the chair of this committee.
Today, we continue our study of Bill C-284, An Act to establish a national strategy for eye care.
Before we begin, I would like to start by doing a round table so that our witnesses and our public know who we are, starting with the deputy chair of the committee, Senator Jane Cordy.
Senator Cordy: I’m Jane Cordy. I’m a senator from Nova Scotia. Welcome.
Senator Osler: Flordeliz “Gigi” Osler, senator from Manitoba.
[Translation]
Senator Cormier: René Cormier, New Brunswick.
[English]
Senator Bernard: Wanda Thomas Bernard, senator from Nova Scotia, land of the Mi’kmaq.
Senator Seidman: Judith Seidman from Montreal, Quebec.
[Translation]
Senator Mégie: Marie-Françoise Mégie, Quebec.
[English]
Senator Dasko: Donna Dasko, senator from Ontario.
[Translation]
Senator Boudreau: Victor Boudreau, New Brunswick.
[English]
The Chair: Thank you very much, colleagues. Joining us today for the first panel, we welcome the following witness in person: from Health Canada, Elizabeth Toller, Director General, Health Care Strategies Directorate, Health Policy Branch.
Thank you for joining us today. We will begin with opening remarks from Ms. Toller. You will have five minutes for your opening statement followed by questions from my colleagues. Ms. Toller, the floor is yours.
Elizabeth Toller, Director General, Health Care Strategies Directorate, Health Policy Branch, Health Canada: Good morning. Thank you very much for the opportunity to appear here today. I will admit this is my first time appearing before a parliamentary committee, and I’m glad it’s this committee here in the Senate, which I understand is a friendly committee. So thank you for welcoming me.
I am here today to talk with you about eye health and vision care from a Health Canada and a Government of Canada perspective. I’m going to start off with a little context setting — I understand you already heard from the bill’s sponsor last night so I won’t go into too much depth — and then give you a sense of how Health Canada is supporting health care and eye care overall.
[Translation]
More than eight million people suffer from one of four common eye diseases and are at serious risk of losing their sight. Vision loss can seriously affect a person’s quality of life and independence.
When Canadians have access to vision care, they can benefit from it at every stage of their lives. Good vision is particularly important for the development of young children and makes many activities of daily living easier. As we age, maintaining good eye health reduces the risk of blindness and vision loss, and improves outcomes related to eye diseases such as cataracts and glaucoma.
[English]
When people suffer preventable vision loss, it can have significant impacts on our health system, including increased health care costs and productivity loss.
We know that the COVID-19 pandemic exacerbated the issue of vision loss in Canada. More people suffered vision loss due to missed or postponed eye exams or treatments, and wait times for vision-related surgeries also increased.
As you know, provinces and territories have primary jurisdiction over the administration and delivery of health care services. However, the federal government has an important role to play in supporting health and health care through legislation, spending power, research and regulation. The federal Health Portfolio is committed to the prevention and treatment of eye diseases and to working with provinces and territories to strengthen Canada’s publicly funded health care system, which provides coverage for vision care services performed by licensed physicians and in hospitals.
Indigenous Services Canada’s Non-Insured Health Benefits Program also provides vision care coverage, including eye exams and eyeglasses, to eligible Indigenous clients who are not covered through other insurance plans.
[Translation]
The Government of Canada has made significant investments in the health care system as a whole to help the provinces and territories provide better care for Canadians, which can include vision care. For example, in response to significant health care staffing shortages and delays in surgeries, including vision‑related surgeries, the government provided a one-time top-up of $2 billion to the provinces and territories in 2023 to address intense pressures in emergency rooms, operating rooms and pediatric hospitals.
[English]
The 2024 federal budget also reconfirmed close to $200 billion over 10 years in health funding through the Working Together to Improve Health Care for Canadians Plan. This includes over $46 billion in new funding for provinces and territories, $25 billion of which has been designated to address four shared health priorities, which include expanding access to family health services, including those in rural and remote areas; supporting health care workers in reducing backlogs; improving access to quality mental health and substance use services; and modernizing the health system with standardized health data and digital tools.
These investments can be used by provinces and territories to boost the capacity of their health systems and help address issues related to vision care, such as gaps in the ophthalmologist workforce.
The Government of Canada also recognizes that supporting research is key to a fulsome understanding of eye health, including how to prevent vision loss.
Since 2018, the Canadian Institutes of Health Research have invested approximately $61 million in vision-related research, and that spans the spectrum of prevention, diagnosis, treatment and management of various vision-related conditions.
Additionally, Health Canada regulates drugs and medical devices, including those intended to be used for eye diseases and conditions. Where warranted, Health Canada has existing expedited review pathways that can be used to facilitate quicker access to health products that treat, prevent or diagnose serious or life-threatening diseases and conditions.
Health Canada is also working closely with key stakeholders to identify and mitigate critical shortages of ophthalmic products when they occur.
[Translation]
In summary, I would like to reaffirm that the Government of Canada is committed to the prevention and treatment of eye disease, and that this is just one of the many steps we are taking to help the provinces and territories deliver health care. If passed, private member’s bill C-284 will direct Health Canada to build on existing efforts by bringing together provinces, territories, Indigenous communities and stakeholders for the development of a national eye care strategy that supports the prevention and treatment of eye disease and ensures better health outcomes for Canadians.
[English]
Thanks again. I’m happy to take questions.
The Chair: Thank you very much, Ms. Toller. We will proceed with questions.
Senator Cordy: Thank you very much for coming before our committee and explaining a lot of the things the department does. It is very helpful. This bill calls for coordination and information sharing between the federal and provincial governments. You spoke about it toward the end of your opening statement, the jurisdictional aspect of the province and the federal government. This bill does call for the coordination and the information sharing. I know that within health, it’s always: Is it provincial or federal or territorial or is it related to Indigenous populations? How would this work, this particular bill, if it is passed as is? How would this work so that it would be fairly seamless?
Ms. Toller: Thank you for that question, senator. As I mentioned in my opening remarks, yes, it is the responsibility of provinces and territories to deliver health care, but it is not unusual for Health Canada or the Health Portfolio members to support health care and support PTs with our different levers, whether it be legislation, spending power, research or regulation.
But one of the most effective tools we have is our convening power. It is not unusual for the Health Portfolio to work with provinces and territories to design national strategies.
A few examples in the recent past have been a diabetes strategy or a framework for palliative care where we bring provinces, territories, Indigenous populations and stakeholders together to develop a common framework with a common vision and guiding principles, priorities and an action plan, which then can lead to collective action. The role the federal government plays is to coordinate that action and bring all the right players together to facilitate that information sharing and reduce duplication.
Senator Cordy: This would be something that you do — I’ll use the term “routinely” — but is it something that the department does fairly frequently?
Ms. Toller: Yes. We have very strong relationships with the provinces and territories — many formal tables and working groups and facilitate a lot of information sharing.
Senator Cordy: Thank you.
The Chair: Ms. Toller, if I may ask a question. I really do hope you will come away from this experience with a desire to return to this committee. We are, indeed, an excellent committee to appear as a witness before.
If you are doing what you say you are doing — constantly talking to provinces and focusing on aspects of eye care — why is a strategy needed?
Ms. Toller: That’s a great question. Sometimes it takes hearing from different stakeholders to understand that some issues are not getting the attention that they deserve. So I think the value of having a strategy is being able to bring all the right players together to have a common understanding of what the problems are and to work together to come up with some common solutions to bring greater attention to the issue.
The Chair: Thank you.
Senator Seidman: Thank you very much for being with us. I’m going to continue along the lines of my colleague about the jurisdictional issues. As a committee, we deal very often with health bills and health issues, and, without fail, the jurisdictional issues hit us in the face. We hear repeatedly from provincial representatives that it is their jurisdiction. So it is very complicated, and I’m sure that even though it is developing a strategy, there are required or expected outcomes from a strategy, which then would mean some kind of relationship with the provinces. I found it interesting that you said there is already some kind of relationship around eye care with the provinces and territories, and I think you even spoke about money being used for it.
My question is this: What is the kind of coordination and information sharing currently with the provinces? Is there actually targeted and tagged required for eye care funding budgeted currently?
Ms. Toller: The collaboration and information sharing that Health Canada does now would be at a higher level, so not necessarily specifically related to eye care. To start in answering your question on the funding, as I described in my opening remarks, we have provided significant investment into health care that the provinces and territories could then choose among four shared health priorities where they wanted to invest their money. Just to remind you, that is around enhancing access to primary care, including in those urban and remote areas. That’s where you can also have vision care as well.
Senator Seidman: Excuse me. I don’t mean to interrupt but I have limited time. So there isn’t anything tagged or targeted now for vision care.
Ms. Toller: No.
Senator Seidman: The other thing is this: Do the provinces have to report back to you how they spend the money?
Ms. Toller: They do, yes. There is a very robust accountability and transparency mechanism in place as part of this Working Together to Improve Health Care for Canadians Plan. As part of that plan, all the provinces and territories committed to better collect, use and share health data, and share health data with the Canadian Institute for Health Information, or CIHI, who develop, in consultation with the provinces and territories and stakeholders, a set of common indicators the health data is compared against.
Actually, just today, the Canadian Institute for Health Information published a report, which is sort of a baseline for the years ahead, to measure the progress being made with the investments and to communicate transparently to Canadians what progress is happening.
Senator Seidman: Again, one of the ongoing issues that have been very apparent to this committee over all the studies we have done is the lack of coherent data across provinces and territories, and then their communication — or willingness to even communicate — back to the federal government. I know CIHI is involved in this indeed. So are you telling us here now that, in fact, there is a better system for collecting data that it is more systematic and standardized across provinces and that they are actually reporting?
Ms. Toller: I’m telling you that there is tremendous progress in improving the way that we collect and share health data. In fact, the commitments I mentioned earlier in terms of them sharing data with CIHI to report against common indicators are much broader. The provinces and territories also committed to adopting common interoperability standards to support standardization of the data and the flow of the data as well to better align their policy frameworks and modernize them to the digital age, as well as help shift the culture so that there is an effective approach to data stewardship to share data for the public good while building the public trust and literacy around health data.
Those are some of the key commitments that encompass an FPT Joint Action Plan on Health Data and Digital Health. All the provinces and territories are actively working toward that. I sit on an FPT committee, along with my Assistant Deputy Minister Jo Voisin, where all of the 13 provinces and territories are very active and participate in that multilateral fora. The whole point of that multilateral action plan is to support them in their individual efforts and using bilateral funding to be able to modernize their own systems.
Senator Seidman: Wow. I think this is something that needs some follow-up. I’m impressed, I have to say, because this has been an ongoing issue.
Ms. Toller: It has been a very long-standing issue, but I am happy to say there is a significant amount of momentum and progress being made, including the adoption of a charter. I should have mentioned that. It is called the Pan-Canadian Health Data Charter, and it puts patients and individuals at the centre of any approach that is taken.
Senator Seidman: Thank you.
Senator Osler: Thank you very much for being here. I have got a bit of a three-part question. Under paragraph 2(2)(d) of the bill, the national strategy may include measures to ensure that the Minister of Health can rapidly examine certain applications and submissions for devices and drugs for eye diseases. I know Health Canada already has pathways to expedite certain applications and submissions. So is paragraph 2(2)(d) needed? Could it potentially introduce an element of ministerial interference into Health Canada’s processes? And do you know of any data that shows prolonged times for assessing applications and submissions for drugs and devices related to eye diseases? Is that specific area of processing times longer than others? Do you have any data to justify why this paragraph is in there?
Ms. Toller: Thank you for that question. Is the paragraph needed? I mean, Health Canada overall does everything in its power to review health products and medical devices in a timely way and has very rigorous processes to do so that are comparable with other regulators around the world.
As you mentioned, yes, there are specific review pathways in order to expedite them. I’ll just describe those to you. The first one is called the priority review pathway. That’s for serious and life-threatening conditions where there is substantial evidence.
The second one is called the Notice of Compliance with Conditions. That’s for medications where you can give early approval on the notion that there is promising evidence but with a condition on the approval that they must return with more evidence to demonstrate the clinical effectiveness. The third stream is actually one where physicians themselves, on a case‑by-case basis, can go to Health Canada and request a medication for a serious or life-threatening condition when a conventional treatment has either failed or is unavailable. So those are the three review pathways.
In terms of your question on ministerial interference, Health Canada does not prioritize one type of medication. It treats all medications equally. In order to expedite them, they have to meet the specific circumstances I just outlined in those three pathways.
In terms of data, I’d probably have to get back to you on that front. But it would be reasonable to assume that there wouldn’t be a delay of a specific subgroup of medications compared to other ones; all submissions go through the same process under the same very rigorous service standards.
Senator Osler: If this bill is passed, what effect would paragraph 2(2)(d) have on Health Canada and the application processing times and pathways?
Ms. Toller: I don’t think it would change anything other than perhaps encourage early collaboration between the manufacturers of vision care medications and Health Canada to ensure that there is an awareness of the priority review pathways that exist.
Senator Osler: Thank you.
Senator Moodie: Thank you, Ms. Toller, for being here today. In 2023, the Food and Drug Administration, or FDA, in the United States approved 12 novel ophthalmological biotherapies. In 2023, in contrast, no novel therapies were approved in Canada. A portion of this bill will allow the health minister to rapidly examine novel therapies for eye and vision care. What are the current limitations in Health Canada that limit the study and approval of new ophthalmological treatments? How could a national strategy for eye care help with this? Will it help?
Ms. Toller: Thank you for that question. Often, it is not necessarily because of Health Canada that there hasn’t been approval of novel medications. It could be that a sponsor or company has not filed a submission in Canada but they have done so in the U.S. So while I can’t specifically confirm that that’s why that happened in 2023, that is my assumption about why that probably happened.
There would be no limitations from the Health Canada perspective should a sponsor come with new novel treatments for review. They would treat them as they typically would under those rigorous service standards that I have already mentioned.
[Translation]
Senator Cormier: Welcome. All this also touches upon areas of jurisdiction, but the Development section of the bill clearly states that:
The Minister of Health must, in consultation with the representatives of the provincial governments responsible for health, Indigenous groups and other relevant stakeholders, develop a national strategy…
If the bill becomes law, what is the federal government’s vision for official language minority communities? The Standing Senate Committee on Official Languages is currently conducting a study on health services in the minority language, and there are countless problems with access to services in French. There’s nothing in the strategy that’s been announced in this regard. Will there be any consultation with official language minority communities, and how will we ensure that this strategy takes into account the federal government’s official language responsibilities? That’s my first question.
Ms. Toller: I heard you ask the question last night, so I came prepared to answer. Part VII of the Official Languages Act requires the Government of Canada to support English and French minority communities and promote bilingualism. At Health Canada, we need to work with the provinces and territories to improve access to services for official language minority communities, and to involve them in our national initiatives where appropriate. If the legislation is passed, we will certainly consult and engage them in this context.
Senator Cormier: What does this mean for relations with the provinces? It’s happening at the provincial level. Does this mean reaching agreements that contain language provisions? What does it imply in practical terms for the federal government’s relationship with the provinces and ensuring that these services are offered?
Ms. Toller: We’ll certainly be thinking about developing consultations. We may ask the provinces and territories to do it, but we can also engage with them directly. It’s something we do regularly in the context of our national initiatives.
Senator Cormier: All right. My second question concerns the training of professionals. You may remember I asked it yesterday. I’m wondering mainly about telemedicine in remote areas and in French-speaking communities, often located in more remote areas. There are challenges in training professionals to use telemedicine devices, but language issues as well.
How will this be taken into account? Often, the language used by these devices is English. For francophones in this environment, what specifically could this national strategy provide to ensure that these problems are addressed?
Ms. Toller: That’s a very good question. There were several initiatives in the context of the Joint FPT Action Plan on Health Data and Digital Health that I mentioned earlier. One of them focuses on digital literacy and data. We’re working with the Public Health Agency of Canada and the provinces and territories to advance provincial and territorial commitments and initiatives to raise awareness among professionals and Canadians about the use of digital tools and the data itself.
In this context, we try to organize round tables with specific groups of the population. We also want to encourage engagement with official language minority communities and promote the importance of communication and the use of these tools in both official languages.
Senator Cormier: Thank you.
I have a quick question about the disaggregated data that ties in with Senator Seidman’s question. How satisfied is Health Canada with the data, and is it able to make adequate use of it? Once again, there seem to be countless challenges.
Ms. Toller: It’s very important to be able to collect disaggregated data. This is one of the agreements we have with the provinces and territories regarding the work they do in providing their data to the Canadian Institute for Health Information, or CIHI.
Senator Cormier: Are you satisfied with the data provided by the provinces and territories?
Ms. Toller: I would say yes. We receive data from Statistics Canada, as well, which goes to great lengths to disaggregate the information.
Senator Cormier: Thank you.
Senator Boudreau: Thank you to my colleagues for allowing me to ask a question. I’m a new senator and not yet a member of this committee, but I’m here as a guest and an observer.
It’s a subject I’m very interested in, and one that’s particularly close to my heart. We’re all here for the common good, but in my own case, I’m legally blind in my right eye due to an eye condition that wasn’t properly treated in childhood. Whenever this topic comes up, it affects me more than any other. I feel that anything we can do to improve the eye care situation is very important. I really like the idea of a national strategy.
I know that our colleague Senator Ravalia spoke on this bill in the Senate at second reading. There are obviously many benefits and advantages. I’d like to ask a question in a different way. I’d like us to work on finding a solution rather than identifying problems. I will ask you this, though: What does Health Canada consider to be the hurdles to developing a national strategy? If we knew what they were, we could find the best way of handling them to make sure we have a national strategy. Would there be any obvious hurdles should this bill become law, and what would be the most significant barriers to its implementation?
Ms. Toller: There’s a big burden on the shoulders of provincial and territorial governments. They have a lot of priorities, and they’re trying their best to deliver health care services to their residents. Provinces take on another obligation by coming to the table and working on a strategy. I think that may encourage them to work together to find common solutions. The other hurdle is that the aim of the strategy is to better share information and raise awareness of vision issues, but we want to see big changes. This can sometimes cost a lot of money. In the current fiscal climate, it could be difficult. Those are two thoughts for you.
Senator Boudreau: Thank you. I feel it’s important to be aware of these hurdles so that we can overcome them, bearing in mind that we’re talking about a strategy here, not a funding program. I’ll draw a parallel with the program that was set up for dental care, however, another program I firmly believe in. We saw that once the program was set up, there was pressure on the human resources front. There weren’t enough dentists to meet all the needs of a new national program. Suppose the strategy leads to a national program. Are there sufficient professionals to consider such an approach?
Ms. Toller: I know that stakeholders in the vision care community will say that there are challenges in health professional capacity. On the federal government side, we provided funding to the provinces and territories that addressed four priorities. One of them is to support health professionals, which could include ophthalmologists, optometrists and opticians.
We work multilaterally to support health care workers. For example, we collaborate with the provinces and territories to minimize the administrative burden, improve recruitment and retention, and accelerate the pathway for internationally trained workers. This additionally allows us to better study the supply and demand for professionals, and to improve data-sharing. In this context, I think we could better understand the challenges facing the eye care community, too.
Senator Boudreau: Thank you for your answers.
Senator Mégie: My question concerns vision rehabilitation. It’s part of the strategy. What can this strategy cover in terms of vision rehabilitation? It’s a very broad field, if I understand correctly. What part of vision rehabilitation will the strategy cover?
Ms. Toller: That has yet to be determined. It’s through consultations with the provinces and territories and all the other stakeholders that we need to determine the scope of the strategy, but I think the vision of the strategy is that it should be very broad and take into account all needs, from childhood to old age, and consider what is needed for rehabilitation.
Senator Mégie: Thank you.
[English]
Senator Dasko: Thank you for being with us today. I have a question that follows up on Senator Boudreau’s question from earlier. It is in the context of your comments about the many priorities that provinces have — so much on their plates, so much to do, so many issues — and if this passes, you would want to call the provinces together to talk about this issue.
Isn’t there a possibility that they would say, “We’re really busy and actually don’t have time to meet with you to do this”? What would you do in that situation? Could you say to them, “Actually, we have something to offer you”? Obviously, dollars are what they might be looking for.
Is this a potential situation either in this — let’s take, obviously in this bill, this area of vision care — is this a scenario that’s possible?
Ms. Toller: It can always be possible, and it can be challenging to bring them together if they have too many priorities. At the same time, we do have very effective and strong relationships with them, and we can use the existing mechanisms in place, like the Conference of Deputy Ministers, for example, to bring the provinces and territories together.
As the strategy so clearly points out, the first step is raising awareness, gathering information and sharing information. That is not a huge request of provinces and territories. I think we can convince them to come to the table to have the conversation to understand what the key issues are and come together on terms regarding what solutions might be needed.
Then, once we have those initial consultations, we can determine what kind of additional supports might be needed.
Senator Dasko: Do you always have success with these entreaties to the provinces? Do they always come to the table?
Ms. Toller: I think it depends upon the climate and the issues that are being discussed. I would say that there are some healthy relationships right now with the provinces and territories. The federal government has provided billions of dollars to support them in the delivery of health care, and so they are keen to support and collaborate.
Senator Dasko: I asked a question yesterday of the sponsor, and I just wanted to get back to this topic. The strategy involves very specific and repeated mention of prevention and treatment of eye disease. I wanted to probe a bit more than we were able to yesterday. What would the prevention activities be?
Ms. Toller: I’m not sure I’ll be able to answer that any more specifically than the bill’s sponsor. I think that’s part of what we need to do in the consultations that would have to go forward with the provinces and territories.
Like you would have seen in the palliative care framework, it would be a very clear outline of the key issues, common vision, guiding principles and the key priorities, as well as some potential steps for action. So it would be through that consultation and engagement process that we would define what types of prevention activities could be included.
Senator Dasko: Can you name any of those activities right now, without putting a priority on them?
Ms. Toller: The simplest one is ensuring there is more awareness raising to ensure that people are going to get eye tests, especially with children. That seems to be one of the key issues that we could do, as well as general information sharing and awareness campaigns.
Senator Dasko: The sponsor also mentioned raising awareness. Is that the main, key area substantively in terms of raising awareness, eye tests with respect to children?
Ms. Toller: I will humbly say I’m not an expert in eye care, but it seems to me that it would be one of the most important areas to emphasize because what we’re hearing, and as the senator pointed out, is when you don’t go for regular tests, certain things can get missed that could have been avoided if a test had been done, and the earlier the tests are done, the better.
Senator Dasko: The federal government often undertakes awareness initiatives in areas of health. Have you undertaken any awareness initiatives in this area?
Ms. Toller: Not to my understanding. This is something that we would consider in the context of the consultations we would do on the strategy.
Senator Dasko: Thank you.
The Chair: I will pick up from where Senator Dasko started on prevention. It seems to me, and I agree with you, that prevention starts with an eye test. We talked about children.
For the most part, throughout Canada, children under the age of 18 or 19 are covered, and senior citizens are covered through provincial health exams. It’s the middle, from ages 19 to 65, working-age adults, and eye exams, I think, cost between $100 to $250. Would the strategy be able to consider developing a bridge so that, in fact, all Canadians are covered for that essential eye care exam?
Ms. Toller: I recognize that coverage in Canada for eye care is quite mixed and varies. It’s largely outside the public health care system. Most aspects, including eye exams and corrective lenses, are covered through employer or private benefit plans or paid for out of pocket. As I mentioned earlier, it’s not part of medicare under the Canada Health Act, except if it’s something that’s a medically necessary service delivered by a licensed physician or in a hospital, like a vision surgery.
As you point out, the provinces and territories all have some level of coverage for things like eye tests and exams for certain demographics like children, seniors or low-income people. It’s really up to them to set the terms and conditions of their public plans to determine who’s eligible for what things.
The Chair: It could be up to the federal government to bring money to the table to bridge that. We’ve just come out of a pretty intensive study on pharmacare where we were able to determine that, notwithstanding private plans, some individuals choose not to take them up because of the co-pay cost or even the premium cost.
Ms. Toller: Yes.
The Chair: I’ll just leave that out there.
Senator Seidman: Thank you. I’m going to go back to my question about the data. The content of the strategy, clause 2 of the bill, says:
(2) The national strategy must describe the various forms of eye disease and may include measures to
It continues, saying:
(b) promote research and improve data collection on eye disease prevention and treatment and on vision rehabilitation;
(c) promote information and knowledge sharing between the federal and provincial governments . . .
Do you know what kind of data we have now on eye disease research, prevention and treatment?
Ms. Toller: I would probably have to get back to you in terms of what data we have now. I can confirm on the research side that the Canadian Institute for Health Information has invested over $61 million into various types of eye care research, so that continues to be an active pursuit. I could get back to you on the specific data that we have.
Senator Seidman: Standardized provincial data that could be compared across provinces and territories is what I’m asking about.
Ms. Toller: The source for that would be CIHI.
Senator Seidman: That leads to my next question: What kind of variability is there across provinces and territories in terms of the eye care prevention and treatment availability?
Ms. Toller: I can commit to get back to you on that based on the available information from CIHI, which gets its information from the provinces and territories.
Senator Seidman: Okay, I appreciate that.
At the risk of being too negative — as my colleague Senator Boudreau kind of referred to, I’m trying to be positive about this — do you see any unintended consequences as a result of this piece of legislation?
Ms. Toller: I think the intent of the legislation is fairly simple in that the first step is bringing people together for a conversation to have a collective understanding of the problems and solutions that need to be addressed and have a common direction. I think that is a fairly simple first step that is necessary.
Senator Seidman: One of the things that I asked the sponsor yesterday was about clause 5 adding to the bill Age-Related Macular Degeneration Awareness Month. It kind of seems to be out of context with the bill itself, especially if we are talking about children. One of the most important aspects of this bill is that children at an early point in their lives have access to testing and prevention. Why would it be important to have clause 5 and somehow have age-related macular degeneration singled out?
Ms. Toller: I wasn’t personally involved in the development of the bill, but it seems as though there are many different awareness days already related to eye care, and that was one that was missing. It’s a fairly prevalent condition that affects seniors, and so I think that’s the main rationale behind it.
Senator Seidman: Thank you very much.
[Translation]
Senator Cormier: My questions will be along the same lines as those of Senator Seidman. In the agreements with the federal government, the provinces and territories, with the exception of Quebec, have committed to increasing the availability of disaggregated data for existing and new common indicators. This will enable the government to keep track of progress made with underserved or disadvantaged populations, including, but not limited to, Indigenous peoples, First Nations, Inuit, Métis, official language minority communities, rural and remote communities, children, racialized communities and the 2SLGBTQIA+ community. So there is a commitment from the provinces to work toward obtaining disaggregated data. I’d like to stress this point, because there are real problems collecting clear data. I’m talking particularly about official language minority communities.
This national strategy and this bill highlight all of these issues. In implementing this legislation and developing this national strategy, how will the federal government, in its relations with the provinces and territories and the communities, take into account current issues, including the one I just mentioned? They seem to be recurring, and here we have a new strategy that affects a very specific area of health needs, namely eye care. How can we ensure this? It’s not in the bill, and there’s no clear commitment. Shouldn’t there be something more specific on this subject in the bill?
Ms. Toller: Thank you for the question. I would say that there seems to be a bit of a gap at the moment on digital data in the context of the current work with the provinces and territories to properly collect and share data with CIHI. It’s very common to encourage the disaggregation of data. It’s part of the work that’s done every day. It’s a condition of data sharing; in fact, the provinces had to give us disaggregated data.
Senator Cormier: This ties in with what Senator Seidman said; they call it “interoperability,” i.e., the exchange of information between provinces and territories. It seems that there are a great many gaps in this area, and that the country could benefit from more intercommunication with regard to data.
Ms. Toller: Yes, absolutely. It’s a long-term project that the provinces and territories are working hard on. The problem is that we have a lot of electronic systems for managing information, but they can’t talk to each other. We need to adopt common standards: standards for the data itself, so that it’s consistent from the point of view of collection, and standards for exchanging it. We have a pan-Canadian interoperability road map, which is managed by Infoway with support from CIHI. They are working with the provinces and territories and electronic information system vendors to adopt these common standards.
Senator Cormier: Is there a timeframe for this? Delivery is urgent and important.
Ms. Toller: Yes, it’s very urgent. The road map is a long-term plan of five to 10 years. Significant progress is being made. Standards have already been published and are in the process of being adopted by the provinces and territories. For example, there’s a standard called the International Patient Summary. It’s a summary of important data, such as your allergies and medications, which can be easily shared between different points in the health care system.
Senator Cormier: Thank you.
[English]
The Chair: We are running out of time. Colleagues, we have two more second round questions and very little time. We also have to on-board our next panel, so I’m going to suggest that Senator Moodie and Senator Osler present their questions and, Ms. Toller, if you could respond to us in writing.
Senator Moodie: I withdraw.
Senator Osler: Thank you, chair. The House of Commons Standing Committee on Health amended subclause 3(1) of the bill to increase the deadline for the preparation of the national strategy report from one year to 18 months of the act coming into force. Why was the previous one-year deadline not sufficient? Is 18 months adequate?
Ms. Toller: Thank you for that question. It takes a long time to bring so many diverse communities together and getting 13 different jurisdictions together. One year is a short amount of time to come together to host a conference and develop a policy framework and a common direction, and 18 months would be a more palatable amount of time.
Senator Osler: Thank you.
The Chair: Thank you very much, Ms. Toller. I hope you have enjoyed our time with you. You have been a very informed and interesting witness, and I’m certain we will see you back at this committee again.
For our next panel, we welcome in person, from the Canadian Council of the Blind, or CCB, Michael Baillargeon, Senior Manager, Eye Care Initiatives; and Ian White, President, Toronto Visionaries Chapter. From Fighting Blindness Canada, or FBC, we welcome Jennifer Jones, President and Chief Executive Officer; and Larissa Moniz, Director, Research and Mission Programs. And from the Alliance for Equality of Blind Canadians, or AEBC, we welcome Lee Pigeau, Executive Director, appearing in person; and Linda Bartram, First Vice‑President, who is appearing by video conference.
Thank you for joining us today. We will begin with opening remarks from Mr. Pigeau and Ms. Bartram, followed by Ms. Jones and Ms. Moniz and then Mr. Baillargeon and Mr. White. I understand that each organization is splitting the five minutes between their two representatives. Because there are six people on the panel, we will have a lot of questions, so I urge you to stay within your five minutes so that we can get to questions and answers.
Mr. Pigeau and Ms. Bartram, the floor is yours.
Lee Pigeau, Executive Director, Alliance for Equality of Blind Canadians: Thank you, chair and members of the Senate committee, for the opportunity to discuss this bill.
AEBC supports the bill but believes in its execution it needs further refinement and some very specific definitions, specifically around vision rehabilitation. We also recommend ensuring that those with lived experience of vision loss are included at the decision-making table, and we want to mandate disability awareness training for those who are involved in the creation and execution of this bill.
We are not just supportive of the bill but also eager to be an active partner in shaping and implementing the national eye care strategy moving forward. We are ready to work with the policy‑makers and the other stakeholders to ensure that the strategy addresses the full spectrum of challenges faced by Canadians with vision loss.
To provide further insights into our recommendations and our commitment to the process, I am going to introduce you to Linda, our first vice-president, who will expand on these points in greater detail. Thank you.
Linda Bartram, First Vice-President, Alliance for Equality of Blind Canadians: Thank you very much. Good afternoon, and thank you for inviting us back to speak to you on this very important topic.
The AEBC is very pleased with the fact that the strategy is going to be looking at and considering vision rehabilitation as well as prevention and treatment. But we are concerned that there is no definition within the bill as to what vision rehabilitation would include. As one of the earlier speakers mentioned, it is a very broad topic, but often it is interpreted as enhancement of remaining vision. So you are rehabilitating the vision somebody already has.
Unfortunately, we know there are not treatments for all eye diseases. The one I have in particular, there is no treatment at this point. We hope there will be at some time in the future.
There is a need for this vision rehabilitation to also include vision loss rehabilitation, for the opportunity for individuals for whom there is no treatment or for whom treatments have not worked to learn orientation mobility, life skills and technology that they need in order to function without their vision. So we would like to see “vision rehabilitation” defined so that there is no misunderstanding when it comes to actually developing the strategy. We want vision loss rehabilitation to be included.
The other piece is that we are very anxious that, in this day and age of “nothing about us without us,” persons with lived experience of serious vision loss and the organizations that represent them be included in the consultations rather than leaving it to chance that we might be included as one of the relevant stakeholders. We would like to see that we are actually listed. As Indigenous groups are listed, we would like to be listed as well.
As far as the list of things that should be included in the strategy, Mr. Pigeau referred to the need for awareness training around vision loss to be integral to the whole process.
It is possibly not that well known that there is a very high unemployment rate for persons with vision loss, up to 75%, and a lot of that is due to lack of awareness of the capacity and abilities of persons with serious vision loss or blindness. We want to ensure that those who are having this conversation understand that before it goes any further.
Finally, we want to ensure that this process is adequately funded. We would like a way of ensuring that the strategy will be adequately funded and that progress can be monitored.
I’ll pass it back to Mr. Pigeau to sum up.
Mr. Pigeau: Thank you.
We urge everyone to consider the recommendations and work toward a strategy that addresses the full spectrum. With these amendments, we know this can be a transformative piece.
The Chair: Thank you. We will now move on to Ms. Jones and Ms. Moniz.
Jennifer Jones, President and Chief Executive Officer, Fighting Blindness Canada: Thank you, chair and honourable senators, for inviting us to speak to you today about Bill C-284. Dr. Larissa Moniz and I work very closely at Fighting Blindness Canada on behalf of the entire vision loss community that we support.
It is a delight to be here. It is a monumental time for all of us. Together with our colleagues, we work very collaboratively to support the vision loss community, who have real, complex and multifaceted needs. In order for us to be able to serve them as best as possible, there must be a lot of transparency and collaboration across organizations.
Fighting Blindness Canada has been serving this community for over 50 years. In that time, we have become the largest charitable funder of vision research in Canada. We were founded by parents whose children were born with an eye disease that would lead to blindness. At that time, there was no hope for treatment. Since 1974, our purpose has been to invest in world‑class research in the pursuit of treatments and cures for people facing the loss of vision due to a blinding eye disease.
Why is that so important? In Canada, there are 8 million individuals living with an eye disease that could lead to blindness. Of those, at least 1.2 million are already on the journey toward losing their eyesight. Some of those might be due to eye diseases you are more familiar with, such as age-related macular degeneration or glaucoma, but there are also more niche and rare eye diseases like retinitis pigmentosa and uveitis.
There is a significant economic impact — the Honourable Judy Sgro was speaking to this yesterday — of almost $33 billion due to the financial quality of life and reliance upon the health care system. These figures represent real lives. We’re talking about people who are losing their driver’s licence and becoming isolated at home because of age-related macular degeneration. One of our recent board members who just joined had to retire as the head of actuarial services at PricewaterhouseCoopers because his retinitis pigmentosa was no longer allowing him to pursue his career.
That is one example. Another is parents who have children born with an eye disease where they will lose their sight in their teens or early adulthood. The parents are questioning whether their child will be able to live independently and pursue their dreams. That is the place my grandparents were in when their younger son, my mom’s brother, was born with retinitis pigmentosa. He became legally blind in his twenties.
However, like a lot of diseases, when there is an application of resources, care, passion and time, these are preventable. In fact, 75% of these cases are preventable, which is why we do the work we do.
Vision loss has days that spike. World Sight Day, for example, was October 10. That is a moment for all of us to rally behind. But in truth, what we really need is a consistent application of care to national eye care. That’s the reason this strategy is so important to us. We want to make sure there is a comprehensive and consistent focus on the full spectrum of eye health care, which we are all going to speak to in turn — better education and awareness, better access to diagnoses and treatments and more investment in research that will drive better outcomes and an improved quality of life.
Larissa Moniz, Director, Research and Mission Programs, Fighting Blindness Canada: I will now speak about research, because that is really Fighting Blindness Canada’s focus, as Jennifer mentioned. Over the past 50 years, we have invested over $45 million in research and education. That has been funded by donors, so we know the Canadian community is really passionate about research and understands the value that research has in improving treatments and outcomes. However, the capacity of donors really doesn’t meet the needs of the vision research community.
That is why we are looking for the national eye care strategy as part of the suite of things that will bring forward greater awareness, better prevention and treatment access and rehabilitation, as well as dedicated funding for vision research. In Canada, we don’t have dedicating funding for vision research. That’s an area where we are really falling behind. Of the areas that research can improve outcomes — because it is the foundation of improving treatments — here are just two examples: About 20 years ago, a new treatment of medicines was approved that has reduced the rate of blindness from age-related macular degeneration by 50%. Also, in 2020 — very recently — the first gene replacement therapy for any disease was approved in Canada, and that was for a rare inherited eye disease. We have talked to community members who have received the treatment who, all of a sudden, have hope that they won’t be going blind and who can see the stars for the first time. Parents talked about taking their children to school and seeing that their children can actually recognize their friends’ faces when they couldn’t before.
That’s what we’re looking for: more opportunities for hope and for wins for our community. In many cases, this will be underpinned by research that is going to keep Canadian expertise in Canada, improve clinical care in Canada and develop made‑in-Canada solutions.
I think we agree that vision health has been undervalued for a very long time, so we are looking to the Senate to try to support Bill C-284.
The Chair: Thank you, Ms. Moniz. Mr. Baillargeon and Mr. White, please go ahead.
Michael Baillargeon, Senior Manager, Eye Care Initiatives, Canadian Council of the Blind: Good afternoon, Madam Chair and members of this important Senate committee. On behalf of the Canadian Council of the Blind, I would like to thank you for the opportunity to speak to you today in support of quick passage of Bill C-284.
Celebrating 80 years of dedicated advocacy and support, the CCB was founded in 1944 by returning World War II veterans blinded by war. It is recognized as the voice of the blind in Canada. The council is tasked with not only representing and advocating for the 1.2 million Canadians who are blind, deaf‑blind and partially sighted, but the other over 8 million Canadians living with an eye disease, as Jennifer Jones pointed out, that could lead to blindness.
Through advocacy and research, the CCB is dedicated to building public awareness and improving the well-being and quality of life of those living with vision loss.
I have provided you with several documents through the clerk’s office outlining vision loss and the health community’s support for a national eye care strategy. My colleagues here today look forward to your questions. That being said, I would like to introduce you to a man of lived experience, the President of CCB’s Toronto Visionaries chapter, Ian White.
Ian White, President, Toronto Visionaries Chapter, Canadian Council of the Blind: Thank you. It is an absolute privilege to be here and speak before you today.
I want to echo some of the comments that have already come forward by saying that prevention, treatment and research are absolutely critical to avoiding unnecessary loss of sight. This bill has, at its core, the desire to minimize the number of people who will experience vision loss.
But there will always be a number of unpreventable incidents of vision loss and blindness. There are people who encounter vision loss later in life, as I did. There are people who are born blind. There are those who lose their sight very early in life and, unfortunately, despite the best treatments available today, those people will lose their vision and need to be supported.
Although many of us are undergoing treatment for a variety of eye diseases, many of us don’t see ourselves as sick or as needing treatment. We are different and disadvantaged, but we are not ill.
I think that’s a distinction that needs to be clearly understood. Diagnosis and treatment for a condition affecting health are a patient’s journey. But once a patient’s medical journey is complete, the full social impact of vision loss on a person’s life and their journey as a person with a visual disability begins. All Canadians with a seeing disability, despite their medical prognosis, those who are patients and those who are not, must be included in this strategy if they are to maximize their independence, improve their quality of life and integrate fully into Canadian society.
The difference in levels of care between those receiving rehabilitation services for vision loss and those receiving other kinds of rehabilitation services is both substantial and unacceptable. Existing programs and supports for those living with vision loss are currently inadequate, unevenly distributed and represent a major barrier to the inclusion and prospering of millions of Canadians living with vision loss today.
For example, one of the best funding systems in the country for visual aids, Ontario’s Assistive Devices Program, purports to support the purchase of visual aids for people who need them. There are nearly half a million Ontarians who are eligible for that funding support, but only 1% of eligible Ontarians actually access that funding. The funded devices are out of date, and they don’t address the current needs of people living with vision loss in 2024. This woeful statistic extends to all provinces where supports are available, and some jurisdictions in Canada have no support for visual aids at all. This is why a national strategy is so vital to ensure that in all jurisdictions across Canada, all Canadians who are living with vision loss can equitably and easily access the vision rehabilitation care they need.
In keeping with Canada’s adoption of the United Nations Convention on the Rights of Persons with Disabilities, this act is a vital step in Canada’s commitment to respect the rights of people with seeing disabilities, to honour that commitment by listening carefully to the voices of those with lived experiences and to honour the spirit of “nothing about us without us.”
In developing the regulations that will define the effectiveness of this landmark legislation, the Government of Canada must rigorously consult with individuals who have lived experience and with all the stakeholder organizations that represent the interests of people living with vision loss in Canada today. It is our view that any potential shortcomings in the language of the current legislation can be addressed during the creation of regulations if there is adequate consultation.
The Chair: Thank you, Mr. White. Colleagues, questions will be four minutes each. I’m going to try to observe time as best I can.
Senator Cordy: That means we have to be fast, so I’ll speak quickly. I’m going to combine two questions.
We heard yesterday from the sponsor of the bill, Ms. Sgro, about the need for an awareness campaign and that there are many people who are not aware they have an eye problem until it is too late to do anything about it. We heard our colleague this morning speak about that being the case for him. An awareness campaign is important because people don’t know about the importance of it and to ensure people are checking their eyes at an early age.
Second, I was interested to hear, Mr. White, your comments today that only 1% are accessing funding for help for visual aids. That blows me away in a bad way. I’m wondering about the importance of an awareness campaign, first, for having eye checkups, and second, so that people are aware of access to visual aids that they may be eligible to receive. Maybe you can start and others could add later to what was a very convoluted question.
Mr. White: This is a multi-levelled conversation that we are currently engaged in with the Ontario government.
The major difficulty is that there is a general lack of information in the broader public about eye disease, what it means to encounter an eye disease, what it means to live with an eye disease and the subsequent loss of vision. Most people are unaware that there are aids available to help people like me cope with daily circumstances. As you saw, I was using a piece of technology to present today.
The call for a public awareness campaign is a huge part of this overall eye strategy. It is getting primary eye care treatment people aware that there are supports and services that can pick up after treatment is complete. It is a conversation around accessing eye care as a suite of possibilities, but I would love to get folks from the Alliance for Equality of Blind Canadians and Fighting Blindness Canada to weigh in.
Mr. Baillargeon: I would like to add to what Mr. White just said and what you mentioned about prevention and eye disease. Right now, there must be some type of overarching template that comes from the federal government that would then work with the provinces and give them an opportunity and a pathway to do some of this.
Maybe we should require children going into Grade 1 to have an eye exam the same way you have to have a vaccination. The report that Fighting Blindness Canada and the Canadian Council of the Blind are putting out next week will tell you that we have a major problem with myopia. We have anecdotal information.
The Chair: Thank you, Mr. Baillargeon. I need to be strict and fair to my colleagues.
Senator Osler: Thank you to all of the witnesses here today.
I’m looking at subclause 2(1) of the bill, which speaks to groups that the minister of health must consult with to develop the national strategy. It states, “. . . representatives of the provincial governments —” and I note not territorial, so that might have been an oversight “— responsible for health, Indigenous groups and other relevant stakeholders . . . .” We did hear from the Alliance for Equality of Blind Canadians suggesting that words be added to include people with lived experiences.
I would like to hear from each of the groups, perhaps starting with the Canadian Council of the Blind and then Fighting Blindness Canada and ending with the Alliance for Equality of Blind Canadians. Can you give the committee your suggestions for who relevant stakeholders could be and if you think that wording should be included in the language of the bill?
Mr. Baillargeon: I would indicate that when we talk about the stakeholders, there are a number of different types.
There are people who are dealing with what would be called the patient group, like the Canadian Council of the Blind and FBC. Then there are the groups like the CNIB, which is a service organization that’s servicing that, and Vision Loss Rehabilitation Canada who service the blind who are in the requirements of that. There is a difference between service organizations, organizations like AEBC, FBC and CCB that deal specifically with it, and then you have the medical side, which is the Canadian Association of Optometrists and the Canadian Ophthalmological Society, so they actually break down into it.
If you look at the letter I sent everybody through Emily at the clerk’s office — the letter that we sent to Senator Plett last year — at the bottom of the letter, it’s signed by 11 presidents of major stakeholders. That gives you a pretty good idea of who that group is. I think you can break it into little committee-type things dealing with specific areas.
Ms. Jones: I echo that. I think the spirit behind this bill would mean that we really want to make sure that many voices are part of shaping the outcomes of this. As Mr. Baillargeon said, there are a lot of stakeholders at the table. Lived experience is certainly one of them; Mr. Baillargeon covered a lot of them too. I would add that caregivers are often a voice that is incredibly important to how people with lived experience are navigating the world and would need to be at that table.
I also think the organizations that you’re hearing from really play to their strengths in the spectrum of vision loss, and so together we are the complete story. We would make sure that we would invite our stakeholders to the table as representatives. So it’s not always us speaking but those who we are serving that we would invite into the conversation. We would ensure that they were part of shaping the policy.
The Chair: Thank you, Ms. Jones.
Ms. Bartram: I agree with those who have spoken to this question, but I would say that if you didn’t want to have to list multiple groups of people, if it just indicated that it was organizations of and for those with lived experience of vision loss, that would probably cover everybody. Then that would ensure that everyone who needed to be at the table was there.
The Chair: Thank you, Ms. Bartram.
Senator Moodie: As a pediatrician, I know — as do many of you — that many provinces like Alberta, Ontario, Saskatchewan, B.C., Manitoba and many others do fund eye exams once a year up to the eighteenth birthday for children. I’m just putting that out there.
The question I have is for Fighting Blindness Canada. As part of your report in 2023, your organization interviewed three Indigenous optometrists who clearly stated the disproportionality and poorer eye and vision health outcomes for Indigenous patients, and identified the difficult role of the NIHB in making access to eye and vision care even harder.
How do you envisage creating a more culturally safe and accessible eye vision care strategy for Indigenous Canadians as a first step? What further information and research needs to be carried out to improve eye and health care for Indigenous people in Canada?
Ms. Moniz: The first step is working in collaboration and consultation with Indigenous groups. For instance, we are currently funding a research project now, and the whole purpose of it is to go into areas in the remote North and ask what their needs are and how they want to receive care. I am not an expert in this; I am not going to speak about what the right step would be, but I think it would have to be understanding the needs from a health point of view and also a delivery and cultural point of view. As a part of a national health care strategy, it has more power behind it as well. I think that’s part of the strength of that.
Across the board, we’re really lacking in research about eye health and eye health outcomes. I used to work in the cancer space and know that the data around treatment, outcomes and prevalence is available and is much easier to find, and that really helps you make health care decisions. You can’t make health care decisions and start improving outcomes without having the data in the first place. I think that is also a core part of the strategy as well, both for Indigenous people but also for eye health care in general.
Senator Moodie: Having made the statement I made before, it’s recommended that the first eye exam is at the third birthday. What’s the data about how often eye exams are being done? Do we have that data?
Ms. Moniz: We do have the data. I don’t have it off the top of my head, but I know that in 2012 or 2010, when Ontario delisted eye exams for individuals between 18 and 64, they still had them below 18 and above 64, it led to a general decrease in uptake of eye exams across the board. I think you’re right. There is eye coverage for a certain number — and every province is different — but I think unless it is more of a universal coverage and considered to be something that is universally important, it’s hard for individuals to understand the priority they need to take with it. Even though it is covered, a lot of parents do not take that up.
[Translation]
Senator Mégie: My question is for Mr. Baillargeon and Mr. White. I’ll ask it in French, but you can answer in the language of your choice.
I may seem off topic; however, for vision support devices for people who are not totally blind, but who have major vision loss, there are devices that are given to them for reading. With these devices — I’m a family doctor and I had patients with this visual impairment — I know they could read pages with two columns. I’d like to know one thing: Do these devices exist, or, now in 2024, have they evolved and are they better able to do what they did in 2000?
[English]
Mr. White: Yes, there are devices available that are gradually becoming more sophisticated in how they handle print material. One of the things that we have noticed about a lot of the visual aids support plans across the country is that many of them are still dealing with a fundamental focus on overcoming a print disability where, in the digital society that we live in today, the primary focus is on digital access. Many of the programs don’t focus on digital access; they are still focused on print disability.
One of the challenges of maintaining adequate support is keeping up with ever-evolving technologies, and that is a difficult task, but it’s one that needs to be addressed in this strategy if people with vision loss are to be included in day-to-day society. Does that answer your question, senator?
[Translation]
Senator Mégie: Thank you. I have a second question. Are the ones available now accessible to the public? Are they accessible and are they covered by insurance or by the province?
[English]
Mr. Baillargeon: Using Ontario’s Assisted Devices Program, or ADP, as an example, they are covered to some extent but not completely. Part of the problem in Ontario is that it sometimes takes up to 8, 10, or 12 weeks to even get an interview to find out exactly what you need and to go through the process.
When Ian spoke of the fact that they are dealing with print, we have a circumstance in Ontario in dealing with the ADP where we’re suggesting that while 75% of people living with vision loss believe a white cane is their most important element, right beside that is that 75% of people believe their smartphone is the next best thing, but they won’t fund a smartphone because of biases and barriers to their present policies. We have a situation where, as Ian points out, the old is getting in the way of trying to put new policies out there, and there doesn’t seem to be any great drive.
One thing I’ll say to this committee — and I think the young lady from AEBC was correct — when we and the committee are sitting down at the table, people need to understand what it’s like to be blind, and that’s missing. People might look at treating it, but the big learned experience for somebody who is sighted, like me, is what it is like to be blind. What’s it like to be born blind? What’s it like to be an interior designer with your wife, doing office buildings in downtown Toronto and being a very successful at it, and to lose your sight and not be able to employ yourself? That’s Ian White’s story. Those stories are multiple across the board.
Understanding what it’s like to be blind is really important. As FBC has pointed out, part of that is research, because there’s medical research going on, and it’s driven by FBC, but it’s not enough. There also needs to be research to find out what it’s like with our native peoples, what it’s like to be blind. The economic barriers in front of somebody who is blind and going for a job, no matter how talented they are, are just astronomical.
The Chair: Thank you, Mr. Baillargeon.
[Translation]
Senator Cormier: I have a very specific question for Mr. Pigeau and Ms. Bartram. You talked about the need for a definition of vision rehabilitation. If this definition wasn’t in the bill, would you be satisfied if it were in the regulations? Can the bill be adopted as is, without this definition, with an observation asking for clarification in the regulations?
I’ll ask Mr. White my question right away. First, thank you for your presentation. You’ve made me aware of something that I obviously didn’t understand in the bill. Is this bill able to meet the needs of people who, like you, are blind and have certain specific needs? Does the strategy need to be clarified to include your specific needs?
[English]
Ms. Bartram: I’m not that familiar with the process. If the Senate can do something to ensure that the definition is included in the regulations, then that would be sufficient.
That’s my answer to the first question. Thank you.
Senator Cormier: Thank you. Mr. White?
Mr. White: One of the things I would urge is a broad understanding of what it means to live with vision loss. Vision loss is not a binary condition. You aren’t either blind or not. Vision loss comes in a whole continuum, from you need to wear reading glasses to manage your daily life, right down —
Senator Cormier: That’s me.
Mr. White: — to you can’t see anything at all. I fall very close to that other end. I have very limited light perception in one eye, but I have no detail at all.
The thing to keep in mind is that vision loss affects all kinds of people from all walks of life, from every socio-economic condition, from every family and social condition, from every background, from every ethnicity. We are a heterogeneous group, and each of us has a particular set of conditions that affects our vision, some more, some less. Some have partial vision, some have very limited vision and some are totally blind. It is a very complex set of people you’re trying to address. For that reason, I would say this strategy needs to be as broad as it can be to include all of those people so that everyone can get down to a tailored solution somewhere as an outcome as the bill is implemented at the provincial and territorial level, so that the supports are there, the treatment is there and the research is there for your needs as a Canadian with vision loss.
Senator Cormier: Thank you, sir, so much.
Senator Dasko: This is just a follow-up to Senator Cormier’s question about amendments to the bill. I think Ms. Bartram and Mr. Pigeau suggested that the bill be modified and changed.
Did you raise this at the House of Commons committee? What did they say to these suggested changes? Obviously, they weren’t made, but I wonder how they dealt with it.
Second, if we are to amend the bill, it would go back to the House of Commons because that’s the process. Do you have anything to say about that?
Mr. Pigeau: Our organization was not involved during the parliamentary part of this. We are here now, and we really look forward to this. It’s the execution. It’s the strategy. It’s the understanding that a national eye care strategy has to be both complex but aggressive.
We don’t think going backwards is a good idea.
Senator Dasko: No. My question really is about amendments to the bill. If we make them, the bill has to go back.
Mr. Pigeau: Understood.
Senator Dasko: So should we make them?
Mr. Pigeau: I think moving forward, amendments to the wording of the bill are probably not appropriate at this time. I would say move forward and work hard on that part.
Senator Dasko: Okay. Ms. Bartram, your comments?
Ms. Bartram: I would add that as long as the regulations can address this, this is fine. The bill doesn’t necessarily need to be held up, but we wanted to make sure that these issues are addressed.
Unfortunately, we weren’t involved in the earlier stages of this bill, and so we sort of have seen it at the eleventh hour. We do see these as things that need to be addressed at some point in the process.
Senator Dasko: Thank you.
Senator Boudreau: My first question was covered by Senators Cormier and Dasko, because amendments and speedy passage don’t go hand in hand. I’m happy to hear that speedy passage is the priority, because I do think this is a very important piece of legislation.
My second question is for Dr. Moniz. You mentioned in your remarks that Canada didn’t have any dedicated funding whatsoever for eye research. I’m wondering if you could provide some examples of some other jurisdictions that do and what the magnitude of that investment would represent.
Ms. Moniz: Yes. A good example is the United States, where they have the National Eye Institute, which is obviously an institute specifically for eye and vision research. Their budget is about $900 million a year. Obviously, if you adjust for population, $90 million in funding is what you would expect for Canada, and currently, in Canada — and this includes charitable funding — we’re spending about $25 million a year on vision research. That includes at least $2 million to $3 million from Fighting Blindness Canada, plus other charitable sources.
We are two to three times under where we would like to be for funding, and we don’t have that dedicated source. We currently fall under the Institute of Neurosciences, Mental Health and Addiction at the Canadian Institutes of Health Research, and if you look at their last strategic plan, the word “vision” in terms of eye care comes up once, and that’s just in their mandate because that’s their official mandate. In the entire strategic document, there is no focus in any way on eye care.
Senator Boudreau: Thank you very much.
The Chair: I believe this brings us to the end of the meeting. I wish to thank the witnesses who have shared their wisdom, their lived experience and their perspectives so generously with us in person and online. You have enriched our understanding of the context of blindness in an important way. Thank you so much.
Colleagues, we will continue our study of Bill C-284 next Wednesday with additional witness testimony. Clause-by-clause consideration will take place on Thursday, October 31.
(The committee adjourned.)