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)
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
(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 Qualtro announcing that bill C-81 has passed
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.
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@ccb.monthlyconversion.com. Once again thank you for your participation.
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 (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
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.
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.
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 (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.
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.
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.
RE:
World Blind Union statement on International Women’s Day, 8 March 2019
The World Blind Union joins the United Nations to celebrate International Women’s Day on 8 March 2019. The theme this year isThink equal, build smart, innovate for change. It focuses on innovative ways in which we can advance gender equality and the empowerment of women, particularly in the areas of social protection systems, access to public services and sustainable infrastructure. Hence it is a day to promote gender equality and women’s empowerment, including women with visual disabilities.
Generally, blind and
partially sighted women and girls experience multiple forms of discrimination,
which infringe on their basic human rights and empowerment. Due to the intersections of discrimination
based on gender and disability, blind and partially sighted women are at a
higher risk of neglect, gender-based violence and exploitation.
The latest data shows that 55% of the world’s
visually impaired are women (139 million). States must address the unique
needs of blind and partially sighted women to ensure equal participation and access
to education, innovation and technology opportunities, employment, rehabilitation,
among other basic rights.
According
to Article 6 of the UN Convention on the Rights of Persons with Disabilities
(CRPD) states parties recognize that women and girls with disabilities are
subject to multiple discrimination, and in this regard shall take measures to
ensure the full and equal enjoyment by them of all human rights and fundamental
freedoms.
Furthermore, gender inequality continues to hold women
back and deprives them of basic rights and opportunities as per Sustainable
Development Goal 5. This Goal states that empowering women requires addressing
structural issues such as unfair social norms and attitudes as well as
developing progressive legal frameworks that promote equality between women and
men.
The
achievement of the Sustainable Development Goals requires transformative
shifts, integrated approaches and new solutions, particularly when it comes to
advancing gender equality, innovation and the empowerment of all women and
girls.
The World Blind Union, therefore, reminds states to fulfil their obligations by
protecting and respecting the rights of women, particularly blind and partially
sighted women. As we
commemorate International Women’s Day, we appeal to states, UN agencies,
development partners and civil society to mainstream the rights of women with
disabilities in their development plans, programs and policies. We urge governments
to end all forms of discrimination against women with disabilities and put in
place necessary provisions to promote gender equality and other fundamental
rights of all women.
It is
vital that women’s ideas and experiences equally influence the design and
implementation of the innovations that shape our future societies.
——————
The World Blind Union (WBU) is the global organization that represents
the estimated 253 million people worldwide who are blind or partially sighted.
Members consist of organizations of blind people advocating on their own behalf
and organizations that serve the blind, in over 190 countries, as well as
international organizations working in the field of vision impairment. Visit
our website at www.worldblindunion.org
