On the Passing of Chris Stark

To the Stark Family,

On behalf of myself as National President and the Board of Directors of the Canadian Council of the Blind (CCB) I extend our deepest condolences to Marie, Jeffery and Chantal – their spouses and as well to the grandchildren. We all have been shocked by Chris’s sudden passing. Chris has made major contributions to blind and partially sighted Canadians for which we are truly grateful and will not be forgotten.

Our thoughts and prayers are with you as you go through this very difficult time.

Sincerely,

Louise Gillis

Chris Stark (1947-2019)

Photo Of Chris Stark

Christopher (Chris, Bobo) James Stark, born November 4, 1947, passed away peacefully on June 3rd, 2019, surrounded by his ever-loving family. He is survived by his loving wife of 46 years Marie, children Jeffrey and Chantal, grandchildren Rowan, Abigale and Nathan, daughter-in-law Jenn and son-in-law John, and faithful guide dog Banksy.

Chris’s tireless passion for advocating for and improving the lives, experiences and independence of persons with disabilities was the cornerstone of his personal life and career, focusing mainly in travel and transportation, telecommunications, banking services and guide dog access. One of his proudest achievements was the implementation of accessible automated banking machines with audio features which can be used independently by customers with disabilities including persons who are blind. He earned several awards including a letter of commendation from Queen Elizabeth II, the Governor General 125th Anniversary of the Confederation Commemorative Medal, and the Queen’s Golden Jubilee Medal. He authored several articles and books including a book about his experiences as a child at the Halifax School for the Blind (HSB), and another about the history of HSB. More information about his life and achievements is available at: His Website – http://bobo.blackspheretech.com/

Donations in lieu of flowers can be made to The Canadian Guide Dogs for the Blind.

His life will be celebrated on June 16th, 2019 from 2-4pm at the Tweedsmuir on the Park Clubhouse at 21 Kinmount Pvt in Kanata.

Please leave comments and notes at:

http://bit.ly/cjsobituary

The Accessible Canada Act has Passed

Press Release

Canadian Council of the Blind

May 2019

The Canadian Council of the Blind (CCB) has been working with the Government of Canada and its agencies, including the Canadian Transportation Agency (CTA), The Canadian Radio-Television and Telecommunications Commission (CRTC) as well as collaborating with blindness organizations toward the creation of an Accessible Canada Act.  All organizations of persons with disabilities have worked tirelessly, especially since Canada signed on to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). 

CCB is pleased to see that the Accessible Canada Act has passed and will receive Royal Ascent very soon.  While we now have a timeline toward 2040, as the National president of CCB, I hope to see our Government take action now so that many of the accessibility issues we currently face will be overcome well before that date. 

We can all work together as Canadians to ensure that the built environment, employment, programs and services as well as access to information are barrier-free for all. 

CCB declared during our 2019 White Cane Week celebrations that this is ‘our year of accessibility.’ At our White Cane Dinner, the Hon. Carla Qualtrough was recognized as our “Person of the Year.”  We would like to acknowledge Minister Qualtrough’s work in making the Accessible Canada Act a reality, and congratulate her, and all others involved.  We look forward to continuing our work to improve the Act wherever possible – Nothing about us without us! 

Happy National Access Awareness Week! 

Minister Calra Qualtro stands smiling in front of the parliment buildings.
Minister Qualtro announcing that bill C-81 has passed

20/20 Ageing: A Life Course Approach to Vision Health Webinar

Enabling Functional Ability webinar poster, please see information below.
You can register by clicking on this image.

Enabling functional Ability Post-Conference Education Webinar Series

June 5, 2019 12:00-1:00 Eastern Daylight Time

20/20 Ageing: A Life Course Approach to Vision Health
Translating Evidence for the Decade of Healthy Ageing

Ms Louise Gillis
President
Canadian Council of the Blind
Mr. Thomas Simpson
Head, Public Affairs and Central Lead, Advocacy, Canadian National Insitute for the Blind
Moderated by: Mr. Greg Shaw
Director of International and Coporate Relations International Federation on Ageing

REGISTER NOW

#IFAConfEd

Presented by the International Federation on Ageing

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 ccb@ccbnational.net. 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


NEWS PROVIDED BY

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 fightingblindness.ca or call 1.800.461.3331 to learn more.

SOURCE Fighting Blindness Canada

For further information: Greg Descantes, 604-646-3564, greg@pacegroup.com; Bryn Turnbull, Communications Officer, Fighting Blindness Canada, 416-669-4476, bturnbull@fightingblindness.ca

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 https://connect.impetusdigital.com/cadth-survey 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 jbarratt@ifa-fiv.org.