Concerns About Off-Label Drug Use in BC

In May, 2009 the CCB wrote a letter to the BC Health Minister George Abbott requesting that Avastin not be included in the BC government’s reimbursement program for treatment of age-related macular degeneration, which became effective in June of that year. Eye doctors in BC are now concerned about rising numbers of an increased risk of sever glaucoma and peripheral blindness.

The Canadian Council of the Blind is the “Voice of the Blind” in Canada and was founded in 1944 by blind war veterans. With over 80 chapters across the country it is the largest membership-based organization for the blind. Since the CCB is concerned with the welfare fo those with blindness and visual impairement, it was encouraged by the government’s decision to join the ranks of provinces that are making available new treatments for the we age-related macular degeneration, the leading cause of severe vision loss for Canadians over the age of 50, but had serious concerns about the inclusion of the unapproved drug Avastin being included.

CCB emphasize that vision loss is a devastating diagnosis because it impacts almost every task and activity related to daily living. In every case, early diagnosis and an individualized approach to treatment are essential to effectively combat rapid vision loss. Only Health Canada approved Anti-VEGF drugs such as Lucentis (ranibizumab) and Eylea (aflibercept)should be used in the treatment of eye conditions such as wet macular degeneration (AMD, diabetic macular edema (DME), retinal vein occlusion (RVO) or ), choroidal neovascularization (CNV) not “off-label” such as Avastin (bevacizumab).

There is a clear economic benefit to sight-saving and restoring therapies, but economics should not be the only determinant. The benefit that anti-VEGF’s provide to peoples’ ability to function independently – to engage in the activities of everyday life that most of us take for granted – has to be the determining factor.

In Canada, people should have the right to choose the therapy to improve or at least stabilize their eyesight so that they can have equality as well as quality of life. Any improvement of vision loss incurred as a result of treatment with anti-VEGF therapies will undoubtedly result in an improvement in individual quality of life. Lack of fully informed consent and lack of knowledge base re differing drugs can lead to possible long term complications – hence, defeating economics of using a cheaper treatment.

CCB takes the position on using only Health Canada approved drugs for use on persons diagnosed with Vision-Threatening Eye Conditions such as wet AMD, DME, RVO, and CNV. This would be the anti-VEGF drugs – Lucentis (ranibizumab) and Eylea (aflibercept). (Avastin (bevacizumab) should not be used “off-label” except in very extenuating circumstances where no other “on label” drug is available. Also, we believe that the patient needs a “fully” informed discussion with his/her medical team prior to consenting to the treatment. This would include cost factors, side effects, benefits (to both patient and Ophthalmologist), and most importantly that they are not receiving medication based on economic benefits.

In speaking with a number of patients who have been receiving treatment for AMD they expressed their joy in regaining some vision following therapy allowing them to drive their car again. Some also expressed fear as they learned about their diagnosis.  The unpredictable nature of side effects adds to the patient’s unease. Also, patients indicated that they want to ensure they are not put at any major risks by receiving treatment that has not been approved by Health Canada. 

The patient is not the only person in a family when the diagnosis is received. Caregivers experience many challenges such as: a caregiver having to take time off work or stop working entirely. This can be impacted if the patient is being treated with “off label” drugs. The social impact on the caregiver in doing this is significant and the financial cost in terms of lost productivity and earning ability has an additional impact on the economy.

CCB supports FBC in requesting a safety study which has been recommended since 2015 in a joint submission by Foundation Fighting Blindness (now Fighting Blindness Canada), Canadian Council of the Blind (CCB) and the Canadian National Institute for the Blind to CADTH.

Need’s Report on Accessible Technology

Please find below the CCB’s Needs Report on Accessible Technology for your review. Special thanks to the 453 respondents from across Canada who took the time to reply to the survey. The results and recommendations, as presented in the final report, are  already having a huge impact on the Governments mindset and will impact on future decisions on legislation effecting Canadians with vision loss. Please forward your comments to CCB National at [email protected] Once again thank you for your participation.

Needs Report – PDF

A woman uses her laptop while wearing headphones that are plugged into it.  Her cell phone sits close by.

Canada’s Largest Private Funder of Vision Research Calls for National Strategy to Tackle Emerging Vision Health Care Crisis


Fighting Blindness Canada 

Apr 25, 2019, 11:10 ET

Fighting Blindness Canada (FBC) is warning that Canada is facing an emerging vision health care crisis that, if not addressed, will see the number of people living with blindness double by 2031.

Blindness is the most feared disability amongst Canadians. In addition to the 1.5 million people living with vision loss today, over 5.59 million Canadians live with eye conditions like age-related macular degeneration (AMD), diabetic retinopathy and glaucoma, which put them at serious risk of going blind.

Vision Loss in Canada and Fighting Blindness Canada (CNW Group/Fighting Blindness Canada)

Fighting Blindness Canada called for a national vision health strategy that entails: a national public health campaign for vision loss prevention; better access to existing vision-related medications and treatments; greater access to emerging treatments such as gene therapy, stem cell therapy, and pharmaceuticals; increased research funding to advance science into clinical trails; access to genetic testing; and the creation of a national talent plan to address the decreasing number of ophthalmologists, optometrists, opticians, and other eye professionals.

FBC unveiled its call for a national strategy in Vancouver, where the organization, formerly known as Foundation Fighting Blindness, also launched its new name and expanded mandate.

“We are changing our name to Fighting Blindness Canada to reflect our mission to accelerate the development and availability of treatments and cures for all blinding eye diseases,” said Doug Earle, President and CEO. “Throughout our 45-year history, research has always been our focus. All the research we fund supports our goal of understanding why vision loss occurs, how it can be slowed or stopped, and how sight can be restored.”

While in Vancouver, FBC and FBC-funded researchers will showcase the latest information about sight-saving research and emerging treatments for blinding eye diseases at several events for the public and scientific community.

About Fighting Blindness Canada

Fighting Blindness Canada Logo

Fighting Blindness Canada (FBC) is the largest private funder of vision research in Canada. FBC has contributed over $40 million to the search for sight-saving cures and treatments for blinding eye diseases. With the support of its generous donors, FBC has funded over 200 research grants that have led to over 600 discoveries such as stem cell research, neuroprotective therapies, technological developments, pharmaceuticals and gene therapies. Visit or call 1.800.461.3331 to learn more.

SOURCE Fighting Blindness Canada

For further information: Greg Descantes, 604-646-3564, [email protected]; Bryn Turnbull, Communications Officer, Fighting Blindness Canada, 416-669-4476, [email protected]

Iluvien Survey for Diabetic Macular Edema (DME)

On behalf of the International Federation on Ageing (IFA), in partnership with the Canadian Council of the Blind, Diabetes Canada and the Canadian Association for Retired Persons, your feedback is requested if you are a person living with Diabetic Macular Edema (DME) or a caregiver for a person living with DME.

The purpose of the survey is to gather vital information to populate a Patient Input Template to the Common Drug Review (CDR) for Iluvien (fluocinolone acetonide intravitreal implant), a medication recently approved by Health Canada.  CDR is empowered to recommend to provincial and territorial governments whether Iluvien should be publicly funded for DME patients.

Please click to begin the survey.

You do not need to have taken Iluvien to respond to this survey.  It should take only about 15 minutes to complete.  Your input is vital to this process and to helping to ensure access to this treatment.
Your responses will NOT be personally identified.  All responses will be anonymously summarized as part of the overall submission to CDR.  This survey will close on Friday, April 19, 2019

On behalf of the IFA and our partner organizations, thank you in advance for your engagement.  If you have any questions about this survey, please contact Dr. Jane Barratt at [email protected].

WBU Position Statement on Accessible Air Travel

The interior of a plane full of people boarding

On March 28, 2019, the WBU published and distributed a position statement to member organizations on accessible air travel. The statement can be found by following this link:

With this statement the WBU acknowledges the status of Canada within the International Civil Aviation Organization (ICAO).

During the period 2016-2019, Canada holds a Council position in the ICAO, and according to ICAO, Canada is considered as having a chief importance in international air travel. Thus, WBU assess that Canadian parties are having greater opportunities to influence the agendas and issues raised in ICAO. Henceforward, it is our perception that your advocacy efforts may yield leverage effects in our global endeavor to lobby ICAO on the three areas raised in the position statement. The issues raised in the WBU statement are not exhaustive albeit form good grounds for advocacy in 2019.

The Canadian Council of the Blind Applauds the Federal Government’s Support of Canadians with Sight Loss

Federal Budget 2019:

The Canadian Council of the Blind (CCB) is emboldened by the announcement of several measures in the 2019 Federal Budget that will greatly benefit Canada’s sight loss community.

A 2012 Canadian Survey on Disability, undertaken by Statistics Canada for Canadians 15 years of age and over, showed that 756,300 Canadians had “seeing disabilities.” In their more recent 2017 Canadian Survey on Disability, this number increased by over 100% (1,519,840 Canadians with a “seeing disability”). These numbers reflect the scope of the problem – now exacerbated by an ever-aging population – which is why the measures announced in Budget 2019 are so important.

First, to address the challenges faced by Canadians with vision loss and print disabilities, we are pleased to see that Budget 2019 proposes to provide the Centre for Equitable Library Access with an investment of $3.0 million in 2019–20 to produce new accessible reading materials that will be available through public libraries across Canada. While this is a one-year allotment (hopefully to increase in the future), it is a good start for an initiative that is greatly appreciated by the sight loss and print disabilities community.  

A pair of  black rimmed glasses held in front of a book, bringing the words into focus.

Second, the CCB supports and commends the government’s Budget proposal to invest $22.8 million over five years, starting in 2019–20, to provide Canada’s independent book publishing industry a much-needed assist in increasing their production of accessible books for persons with print disabilities. We will be waiting, with great anticipation, for materials provided to persons with print disabilities to exceed the 10% of books currently made available in accessible format.  

Third, in support of independence of persons with disabilities, Budget 2019 also proposes to invest $0.5 million in 2019–20 towards finding ways to improve the accessibility of electronic payment terminals to enable persons with disabilities to conduct daily activities, such as paying for their groceries, without relying on others. Providing this type of accessibility with swift action on implementation will receive strong support from peoples with disabilities. 

Fourth, the CCB is also pleased to see the mention of drug costs – which also affects many in our community. The budget included a section on pharmacare, with several announcements, including the introduction of the Canadian Drug Agency to improve prices and lower the cost of prescription drugs for Canadians by up to $3 billion per year in the long-term.

And finally, most notably to the CCB, the government is committed to improving employment opportunities for persons with sight loss. To this end, Budget 2019 proposes to provide $1.0 million in the next fiscal year to the Canadian National Institute for the Blind to connect persons with vision loss to small- and medium-sized employers. The CCB sees this as a top priority. With chronic unemployment in the sight loss community (according to our recent survey), the CCB looks forward to reviewing the plans, confirming what will be covered, and getting a handle on where people will find work. The CCB is looking forward to working with the government and stakeholders, in this first of many steps required, to put Canadians with vision loss on an equal footing with their fellow Canadians.

Employment is a top concern for the low-vision community in Canada. For this reason, the CCB has recently completed a national “Survey on Accessibility and Assistive Technology” to help Canadians with vision loss participate in the workforce. Over 450 members of Canada’s vision loss community participated in the survey. The CCB looks forward to sharing the results of this survey with its federal government partners in this initiative.

A portrait of Minister Carla Qualtrough
Minister Carla Qualtrough

The CCB would like to extend its deepest gratitude to the Minister of Public Services and Procurement, Carla Qualtrough, a true champion for Canadians with disabilities. The CCB offers its full support to Minister Qualtrough and looks forward to working to implement her broad vision for improving the lives of Canadians with sight loss and ensuring that this Budget 2019, when passed, contains these all-important measures.

Louise Gillis Signature

Louise Gillis

National President

Canadian Council of the Blind

For more information, contact Becky Goodwin at CCB National: [email protected] or 613-567-0311.