If you missed the Annual General Meeting you can download the Raw recording here. Also listed below is a time edited recording with the silences removed. NOTE- The first minute of audio was damaged and has been removed, we join the meeting as Lousie Gillis is making the presidents welcome.
2018 was an extremely busy year for
the Canadian Council of the Blind (CCB). As the National President I travelled
from coast to coast in Canada, into the USA, Switzerland and Turkey
representing CCB at various meetings.
This year we worked on many advocacy
issues as an organisation and with a variety of other organizations. One of the
first items is a project we partnered with Neil Squires Foundation and CNIB on a
project called “Enabling Access to Retail Payment Systems by Persons with
Disabilities”. Canadians with disabilities such as blindness are not offered
the necessary assurances of security, verification and independence to which
every Canadian is entitled. A described video
was made and then we invited some of Canada’s senior representatives from government,
banking and industry to motivate them to take action. This continues to be a
work in progress.
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.
Chris Stark (1947-2019)
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/
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
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!
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
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 economicbenefits.
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.