Paying the Price: What Vision Loss Costs Canadians and What We Should Do About It

An urgent call to action in response to the 2009 Cost of Vision Loss in Canada report

This article presents CNIB’s response to The Cost of Vision Loss, a research report commissioned by CNIB and the Canadian Ophthalmological Society and carried out by Access Economics, an independent economic consulting firm. For more information, and for the Cost of Vision Loss Summary Report, please see www.cnib.ca/covl.

An Indefensible Burden

Of the five eye conditions that cause most of the vision loss in Canada, none are curable, but all can be effectively treated. Some of them can even be prevented. There is a lot we can do to stop vision loss and the devastation it causes. In fact, 75 per cent of all vision loss in Canada is entirely avoidable.

So why are so many Canadians losing their vision – one person every 12 minutes?

For those who do experience vision loss, it is more than possible to live an independent, fulfilling, and productive life – as long as appropriate rehabilitation training, support, and accommodations are made available.

Yet half of all adults with vision loss live in poverty, reporting gross annual incomes of $20,000 or less. The employment rate among working-age people with vision loss is a scandalous 32 per cent – far below people with other disabilities. There is inadequate access to vision rehabilitation services across Canada, and most of the services that exist are provided by a charity – CNIB.

Elderly Canadians who lose vision often live in social isolation, and their families may pay a high personal and financial price to provide adequate care. People who develop vision loss are often forced to retire early, or they may lose their jobs and languish on disability benefits. In some cases, they have had to sell their homes to pay for the treatment they need.

For this, Canadians pay $15.8 billion per year.

Where would we be if we diverted more of those dollars into prevention, treatment, rehabilitation, accommodation and research?

Why do we have a vision loss crisis, one that is only going to get worse, particularly when we’ve known for so long that it was coming?

The answer is that Canada has no plan to address it. And every year we wait, nearly 50,000 Canadians lose their vision.

Although we’ve known about the crisis for some time, we now know the exact price of doing nothing – both the financial cost, and the cost Canada pays in human lives. With this knowledge comes an even greater imperative for action.

This paper presents CNIB’s response to The Cost of Vision Loss in Canada, a groundbreaking independent research report outlining a vision loss crisis in Canada that has quite simply become massive and indefensible. (For the full report and the Cost of Vision Loss Summary Report, see www.cnib.ca/covl.)

In these pages, you will learn about the cost of vision loss and how it compares to other diseases in Canada, the human cost associated with vision loss, where we’re headed in future, and CNIB’s specific recommendations on what can – and must – be done to fix the crisis, most importantly through developing a national vision health plan.

Canada’s Commitment

The idea that Canada needs a national, strategic and coordinated approach to vision health is not new. In 2003, in recognition of the growing crisis in vision loss in Canada and around the world, the Canadian government was instrumental in helping to pass a resolution called The Global Initiative for the Elimination of Avoidable Blindness (also known as Vision 2020: The Right to Sight) at the World Health Assembly, the highest decision-making body of the World Health Organization (WHO).

Resolution 56.26 called on all WHO member states to develop national vision plans with the goal of eliminating avoidable vision loss by 2020.

WHO member states such as Canada that signed on to the initiative agreed to:

• Establish national planning committees by 2005 in collaboration with nongovernmental organizations and the private sector.
• Develop national vision plans by 2005 and begin implementing them by 2007.
• Mobilize and support resources to back these plans.

Although the National Coalition for Vision Health, an umbrella group of Canadian associations that share a common interest in vision health, has been working with Canada’s federal and provincial governments on the issue, to date there is still no vision plan in place for Canada.

Meanwhile, many WHO member states already have national vision plans (including 104 low- and middle-income countries), and many countries, including the United Kingdom, Australia and India, are well on their way with implementation. They are far ahead of Canada in terms of addressing the enormous costs and personal burden associated with vision loss.

Since Canada signed on to WHO’s global initiative in 2003, more than 270,000 Canadians have lost their vision.

Our nation still has no strategy in place to deal with the crisis. Every year we wait, nearly 50,000 additional Canadians lose their vision.

The Financial Cost of Vision Loss

The Cost of Vision Loss in Canada report found the annual price tag associated with vision loss in Canada is exceptionally large – much higher than previous estimates, even using conservative methodology. At $15.8 billion, the cost amounts to a shocking 1.19 per cent of Canada’s 2007 GDP (roughly equivalent to Canada’s annual military expenditure, which totaled 1.1 per cent of GDP in 2005¹).

The largest financial cost from vision loss is associated with direct expenditures in our health system, at $8.6 billion. In fact, when placed alongside all other categories in the Public Health Agency of Canada’s Economic Burden of Illness in Canada (EBIC) study², vision loss has the highest health care costs of any disease in Canada – costing Canadians much more than diabetes, all cancers, cardiovascular disease, mental disorders, respiratory diseases (pneumonia, influenza, COPD, and asthma), arthritis or osteoporosis.

The financial price tag attached to vision loss includes both health system (direct) costs and indirect costs such as lost productivity, administration, care and rehabilitation. After health care costs, the second-highest financial cost results from lost productivity – what people with vision loss would earn if they were able to fully participate in the workforce – which costs Canadians $4.4 billion a year.

When compared with other diseases, vision loss also has a surprisingly large burden in terms of overall financial cost, not just health care. Vision loss ranked fourth in overall costs compared to other diseases – ahead of diabetes, respiratory diseases and mental disorders. Overall, vision loss accounts for a large proportion – approximately eight per cent – of the economic burden of all illness in Canada.

In terms of who pays for the costs of vision loss, the answer will also surprise many. Canadians might be forgiven for thinking that vision loss does not affect them if they, and their family members, are fortunate to have lived without eye disease or injury so far. But they would be wrong.

The Cost of Vision Loss in Canada report found that all stakeholders pay for Canada’s vision loss crisis – and in particular average Canadians. The largest financial costs from vision loss come out of taxpayers’ pockets: federal and provincial governments bear 55.3 per cent of the costs and “all of society” (Canadians who are not directly affected by vision loss) bears a further 18.7 per cent.

The Human Cost of Vision Loss

The burden of disease (also known as the cost of suffering) was estimated in the Cost of Vision Loss in Canada report – for the first time ever in Canada – at $11.7 billion per year, all of it borne by Canadians with vision loss. Although this is not a real financial cost, it is an important measure of the human toll that must be accounted for along with the significant financial loses associated with eye disease and injury.

Vision loss is not fatal, but its impact on quality of life can be severe. The World Health Organization’s 2004 Global Burden of Disease report places low vision (defined as a visual acuity less than 6/18, but greater than 3/60) in the same disability weighting class as angina, HIV, alcohol dependence, and rheumatoid arthritis. WHO includes severe vision loss and blindness alongside conditions such as Alzheimer’s disease and Down syndrome in terms of its impact. While these comparisons are stark and difficult, and entirely inapplicable for many people with vision loss, they do provide some indication of the magnitude of vision loss and the difficulties that must be overcome, particularly when someone first loses their sight.

We know vision loss has wide-ranging implications across the lifespan. It affects work, income, self-esteem, dignity, family relationships, the ability to drive, leisure activities, community involvement and the activities of daily living. People who lose their vision may not enjoy full access to the same rights and benefits that other Canadians enjoy, and they may experience social isolation and stigma.

And while vision loss itself may not be fatal, it can precipitate other serious health impacts. We know that clinical depression is three times as common in people with vision loss compared to the general population. Seniors with vision loss face twice the risk of falls, four times the risk of hip fractures and a greater risk of incurring motor vehicle accidents and medication errors. They are admitted to nursing homes three years on average before they would be otherwise. Statistically, vision loss doubles an elderly person’s risk of premature death, likely due to factors such as falls and depression.

It is important to remember that vision loss affects more than the person who experiences it. Spouses of people with vision loss may need to take on extra roles and responsibilities, such as driving or earning additional income. Working adults may need to take time off from their jobs to care for aging parents or take them to medical appointments. Someone who develops vision loss may have already been a caregiver for another person – a single mother for her children, for example, or an elderly woman for her spouse – which means that other friends and family members, government programs or both must fill the gap in care. Vision loss has a tremendous ripple effect on Canadian families and communities.

Fortunately, vision rehabilitation and support services go a very long way in improving quality of life for people with vision loss – and eliminating some of the costs associated with it. Time and again, people who receive adequate support services report heightened feelings of hope, fulfillment, and independence. Rehabilitation agencies such as CNIB provide essential support with things like travel skills, banking, cooking, computer skills and training to make the most of residual vision. They also provide access to counseling and peer support, reading materials in alternative formats and specialized devices to maximize independence. Most people who receive these services describe them as a lifeline.

Rehabilitation services are an important part of vision health care, along with the medical aspect of care. They step in when the medical system might otherwise say, “there is nothing more that can be done” and offer someone with vision loss a much better alternative. Vision rehabilitation is just as essential as the rehabilitation Canadians receive in the medical system when they have a hip replacement, speech-language difficulties, angina or a stroke.

Unfortunately, unlike the rehabilitation services available to someone who may have other medical conditions, provincial and territorial health care plans (outside of Quebec) do not cover vision rehabilitation.

The Demographic Tsunami

If we think the costs of vision loss are high now, just wait. The Cost of Vision Loss in Canada report showed that unless we do something about it, vision loss is only going to rise rapidly in future, placing an even greater human and economic burden on Canadians.

Most of this impact is due to “the demographic tsunami” – the rapid aging of Canada’s population that has already begun and is projected to accelerate in the next 25 years, doubling the number of Canadians with vision loss and the cost of vision loss to $30.3 billion (in 2007 dollars). In the coming decade, Canada’s demographic makeup will already look vastly different than it does now. As baby boomers age and younger Canadians continue to have fewer children, Canada will have a smaller working-age population supporting a larger cohort of seniors. Combine this with the fact that the five major eye conditions in Canada are strongly correlated with age, and that many of Canada’s eye care professionals are aging as well, and we have a perfect storm for the vision loss crisis to go from bad to catastrophic.

Without a national vision health plan, we will be rudderless in this storm. Our health care system, our economy and millions of Canadians could needlessly suffer.

What We Could Be Doing

Although Canada’s aging population is a certainty, a tsunami of vision loss is by no means inevitable. There is a lot we can do – that we are not doing already – to reduce the cost and prevalence of vision loss.

Canada has a good continuum of vision health care from cradle to grave compared to many countries. But we still face significant challenges and have the opportunity to close many gaps in vision loss prevention, treatment, accommodation and rehabilitation.

Prevention and Treatment

According to the Cost of Vision Loss in Canada report, 75 per cent of all vision loss in Canada is avoidable. Although none of the major eye conditions in Canada have cures, they all have effective options for prevention and treatment.

• Cataract surgery is one of the safest and most successful procedures in medicine, restoring full vision for 95 per cent of those treated.
• Refractive error is the largest cause of vision loss in Canada, yet it is the easiest to treat. By ensuring people have the corrective lenses they need throughout their lives, a great deal of significant vision loss in Canada can be avoided.
• Early diagnosis and treatment in cases of diabetic retinopathy can prevent up to 98 per cent of severe vision loss in people with diabetes, and in many cases, diabetes itself can be prevented or controlled through diet and exercise.
• Early treatment for glaucoma and strict adherence to treatment can preserve a great deal of vision.
• AMD, the eye disease causing the greatest amount of vision loss in Canada, has new options for prevention and treatment that were not available even 15 years ago. Vitamin therapy for patients with certain forms of dry AMD can stop or slow the progression of the disease. A drug therapy for wet AMD has been shown in clinical trials to preserve sight for 95 per cent of patients, and restore a significant amount of vision in 40 per cent of cases.

We also know that many treatment and prevention measures are highly cost-effective. Screening and treatment for diabetic retinopathy, for example, costs only $2,100 per quality-adjusted life year (QALY) and $11,000 per QALY in a remote, First Nations community where prevalence rates for diabetes are high. (In Canada, an intervention is considered cost-effective if it is priced at less than $40,000 per QALY).

There are also many proven lifestyle changes Canadians can make to reduce their risk of vision loss. Aside from getting corrective lenses if they need them, Canadians should have eye examanations regularly. Early detection is key in treating diabetic retinopathy, glaucoma and AMD, so regular eye exams – whether someone needs a new prescription or not – are essential to reducing vision loss. Adults and younger Canadians also need to be made aware of the importance of quitting smoking and wearing sunglasses as significant steps they can take to prevent vision loss later in life. It is deplorable that so many Canadians are not aware of these simple but essential facts.

We have to ask ourselves why more vision loss in Canada is not being prevented or treated when it is avoidable. Why are there Canadians with significant vision loss from cataract, when an effective surgical option exists? Why is diabetic retinopathy such a growing concern when early detection and treatment is so effective? And what is Canada doing to increase treatment and prevention options for Canadians?

There are many answers to these questions, covering multiple areas:

• Research: Eye research is critically underfunded in Canada. Our nation’s main federal agency for medical research (the Canadian Institute for Health Research) allocated only 1.8 per cent of its $562 million grant budget in 2005-06 to vision health research, far below what would be expected given the proportion that vision loss accounts for in Canada’s total burden of disease. Other sources of research funding are smaller and scattered in pockets across the country. We need a greater focus on research to find cures and treatments for eye disease, create a better evidence-base for cost-effective interventions and learn more about why Canadians are not getting the treatments or interventions they need.
• Public Education: Canadians need to pay much more attention to their vision health and have a better understanding of eye disease. Vision loss is one of the disabilities that Canadians fear most, yet they know very little about prevention. And no wonder. Within the Public Health Agency of Canada (PHAC), there is no specific department assigned to promoting vision health. Canadians are in dire need of a large national vision health campaign along the lines of the Canadian Heart Health Strategy, Health Canada’s Tobacco Control Strategy or the Canadian Diabetes Strategy. We also need a greater focus on eye disease in medical schools, so that groups at risk of vision loss can be targeted for interventions and family physicians can learn to look for vision loss as an underlying cause of other health problems.
• Access and Resources: The number of Canadians per ophthalmologist is projected to increase by 76 per cent in the next 15 years. Medical care for vision health and treatments for eye disease are not offered consistently across the country. Although important improvements have been made in cataract surgery in recent years, wait times for other appointments and procedures are too long. The medical system for vision health needs to be better resourced and managed to provide Canadians with the care they need.

Accommodation and Rehabilitation

Once someone develops vision loss, accommodation and rehabilitation are essential. With appropriate support, someone with vision loss is much more likely to maintain a good quality of life and to fulfill their potential. It is about making the tools available so that people with vision loss can get on with their lives.

Accommodation and rehabilitation take direct aim at the burden of disease associated with vision loss (the human cost). They play a key role in reducing suffering, isolation, and the loss of self-esteem. But they also play a very significant role in terms of financial costs. Accommodation and rehabilitation are directly related to education and job success, which is highly significant given that lost productivity is the second-largest financial cost associated with losing vision.

There are several areas where Canada can improve in accommodation and rehabilitation:

• Research: Just as we need more medical vision health research, Canada needs more research focused on meeting the needs of people with vision loss. We need to study unmet needs, factors that increase life success, gaps in service and the effectiveness of rehabilitation interventions.
• Employment: It is unacceptable to have a Canadian minority population with an employment rate as low as that faced by people with vision loss – 32 per cent. It is a national scandal that so many people with vision loss live below the poverty line. We need a national employment strategy and job accommodation programs to better serve Canadians with vision loss, providing a chance at fulfilling work and the opportunity to contribute their talents to the Canadian economy. Governments and employers must both get involved.
• Devices: People with vision loss use assistive technology to great effect to boost their independence. But some devices can be expensive, particularly for a group that is already collectively below the poverty line. Only four Canadian provinces have assistive devices programs to address some of the need.
• Rehabilitation funding: For more than 90 years, Canada’s vision rehabilitation needs have been met largely by one charity, CNIB. CNIB’s capacity to deliver vision loss rehabilitation and library services quite literally depends on the success of local bingos, car raffles and individual generosity. Provincial government support of CNIB services ranges from 5 to 35 per cent, and as things stand, CNIB struggles to maintain the services it has. Vision rehabilitation services need to be funded adequately alongside all other components of vision health care.

Recommendations

Canada can no longer afford to wait for the vision health crisis to get even worse.

We can no longer afford the lost potential of almost 50,000 Canadian lives each year and the $15.8 billion annual cost of vision loss, largely coming from Canadian taxpayers.

We can no longer afford to shirk our international commitment to address this crisis. The ideal time to act was yesterday. The next best thing is to act now. With this in mind, CNIB offers a set of recommendations on how Canada should address our vision health crisis, broken down by stakeholder group identified in the Cost of Vision Loss in Canada report.

Key Recommendation:

CNIB is calling on Canada’s federal government and all provincial/ territorial governments to work with all Canadian vision health stakeholders to develop and implement a vision health plan for Canada as soon as possible.

• In 2003, Canada made a commitment to the World Health Organization to develop and implement a national vision plan by 2005 and begin implementing the plan by 2007. To date, no such plan exists for Canada.
• Canada’s governments and vision health stakeholders need to work with the National Coalition for Vision Health with absolute urgency to create and implement this plan. Further delay would be morally unconscionable and financially irresponsible.

Supporting Recommendations:

CNIB is calling on the federal government to ensure the following are included within a vision health plan for Canada:

1. Through the Public Health Agency of Canada, establish a Vision Health Policy Directorate to assume responsibility for lowering rates of vision loss in Canada. PHAC and Health Canada should recognize vision loss as a major public health issue by developing a comprehensive national public health strategy similar to those used for issues such as diabetes and smoking cessation.
2. Expand the Wait Time Initiative to include treatment for all eye conditions (not just cataracts) and ensure adequate training and resourcing of not just medical but also rehabilitation vision health professionals so that the eye care needs of all Canadians can be met.
3. Increase funding through labour market agreements for a nationwide employment program to look at ways to address the high (75 per cent) unemployment rate among working-age people with vision loss and help them obtain good, selfsustaining jobs.
4. Support the introduction of a nationwide, portable, and affordable assistive devices program through transfer dollars so that people with vision loss can get the tools they need to thrive in work and other pursuits, which will drive down costs such as those associated with lost productivity.
5. Ensure that the dollars allocated to vision science research through the Canadian Institute for Health Research proportionately reflect the burden of illness associated with vision loss in Canada.

CNIB is calling on all provincial/territorial governments to ensure the following are included within a vision health plan for Canada:

1. Support the development of multidisciplinary eye care teams to meet current and future eye care needs of all citizens for medical and rehabilitation examinations and treatments.
2. Commit to providing and funding vision rehabilitation services as part of the health care system.
3. Commit to providing a provincial/territorial assistive devices program if one is not already in place.
4. Commit to providing all cost-effective proven treatments and prevention interventions for eye disease under public health plans. For example: sight-saving treatments and regular eye exams for all citizens.
5. Offer targeted vision health information campaigns, screening and interventions to at-risk groups based on differences in eye disease prevalence rates among genders, ethnicities and ages.
6. Conduct an information campaign targeted to general practitioners on risk factors for eye diseases, the need for eye exams (to improve referrals to eye care professionals) and the importance of considering vision loss as an underlying cause of other health problems.

CNIB is calling on employers to

1. Understand that most working people with vision loss can be accommodated in their jobs. Understand that many job seekers with vision loss are well educated and highly skilled, and they will become committed, valuable employees. Learn what accommodation involves.
2. Reach out to people with vision loss with job opportunities. Make sure your website and other places where you promote job openings are fully accessible. Make sure you can accommodate people with vision loss at job interviews, as customers and in the workplace.
3. Be vigilant about eye safety for employees on the job. Introduce an industrial eye safety program for employees who are at risk for injuries because of their profession.
4. Include comprehensive vision care coverage in your employee health plans.

CNIB is calling on all Canadians to

1. Take ownership of their vision health. Understand that vision loss affects many more Canadians than other well-known diseases. Support Canadians with vision loss on individual and societal levels.
2. Do what you can to prevent vision loss if you do not have it. Get informed about eye disease and vision loss treatment and prevention. Regular eye exams, quitting smoking and wearing sunglasses are key steps to take.
3. Support the recommendations that have been outlined in this report. Encourage employers, provincial/territorial governments and the federal government follow through with the initiatives listed above.

CNIB is calling on individuals with vision loss to

1. Seek treatment to improve your available vision where possible. Don’t accept vision loss, particularly, as a “natural” part of aging. Eye disease is a medical problem that in many cases can be treated.
2. Seek rehabilitation training and other useful support, which can greatly improve the quality of your life. Understand that there is never “nothing more that can be done.”

CNIB is calling on friends and family members of people with vision loss to

1. Understand you may be more at risk to develop the same eye condition if a family member has vision loss. Educate yourself about early detection and steps you can take to reduce your risk.
2. Encourage older relatives who do not have vision loss to seek regular eye examinations. Early detection of eye disease can make a big difference.
3. When thinking about your friend or family member, understand that vision loss is not “a part of life” that has to be accepted. It is a medical issue, and many conditions can be treated. Encourage elderly relatives in particular not to accept vision loss, but to seek treatment as soon as it is detected. Treatment can make a fundamental difference to someone’s quality of life, and it may even prevent early death.
4. If your friend or family member does have an eye disease, find out what help is available as early as possible and encourage them to seek rehabilitation, counseling and other useful support. Understand that there are many things that can be done that can vastly improve quality of life when someone has vision loss. With proper rehabilitation training and support, and access to appropriate technologies, people with vision loss can continue to do many of the things they enjoy and fulfill their potential.

¹The CIA World Factbook, www.cia.gov/library/publications/the-worldfactbook/geos/CA.html

²For a full comparison and cost breakdown, please see the Cost of Vision Loss Executive Summary, Appendix C, at www.cnib.ca/covl.