Awareness Campaign Alerts Canadians to be Vigilant About Eye Health

Nine in ten Canadians agree that patients suffer when treatment decisions are influenced by drug cost

Toronto – July 12, 2016 – Estimates suggest that more than 50,000 Canadians will lose their sight every year due to conditions such as age-related macular degeneration (AMD), diabetic retinopathy, glaucoma, cataracts and refractive error.iMore than 5.5 million Canadians have a significant eye disease that could cause vision loss.ii Citing an impending crisis in vision health, the International Federation on Ageing (IFA) in collaboration with several partner organizations, today announced the launch of an awareness campaign to remind Canadians, especially those 45 years and older, that they need to be especially vigilant and engaged in the health of their eyes.

Patients and physicians, in a recent survey commissioned by the IFA, reported that Canadians should have access to the most appropriate Health Canada-approved treatments for retinal and other conditions, irrespective of cost.

THE IMPACT OF VISION LOSS

CNIB, using 2013 data, estimated the direct health costs of vision loss due to AMD and diabetic retinopathy to be $1.8 billion and $412 million per year respectively.iii Add to this the cost of falls, depression, hip fractures and nursing home admissions associated with vision loss are estimated to be $25.8 million, $175.2 million, $101.7 million and $713.6 million, respectively.iv

“Vision loss is not just about a physiological loss; there is often a cascade of losses that an individual and often their spouse or relative experiences,” explains Louise Gillis, National President, Canadian Council for the Blind (CCB). “In addition to diminished independence, vision loss has also been related to higher rates of unemployment, divorce and clinical depression. Being more informed and engaged in eye health, including knowing about the full range treatments that can potentially treat and even restore vision loss is a “win-win” socially and economically.”

THE EYE SEE YOU CAMPAIGN

While sharply focussed on issues related to protecting and maintaining vision health, the Eye See You campaign also focusses on the need for individuals and families to be fully informed and educated about the treatment options available to them. The campaign addresses physicians as well, supporting their autonomy to decide the most appropriate, evidence-based treatment for their patient.

“The Eye See You campaign recognizes the critical relationship between patients, including their family and doctors in discussing treatment options, making educated choices and helping remove barriers to the most appropriate treatment and care available,” says Dr. Jane Barratt, Secretary General, International Federation on Ageing.

ADDRESSING THE ISSUE

Fortunately, many retinal conditions are treatable if the appropriate treatments are available and delivered in a timely manner.v “Timely access to the therapy is critical to maintaining vision health,” says

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Dr. Barratt. “Recent discussions about drugs used to treat retinal conditions has raised important questions about how therapies are accessed in Canada,” she continues. “Decisions to restrict access to any appropriate therapy should be based on scientific evidence and the real-word experience of stakeholders including patients, physicians and patient organizations, and not on cost savings.”

SURVEY REACHED OUT TO INDIVIDUALS AND PHYSICIANS

Canadians insist that choice trumps cost. According to two Ipsos surveys conducted in June 2016 – one of Canadians over the age of 45 and the other among medical specialists and family physicians there is strong agreement that a physician in consultation with the patient should be able to determine the most appropriate Health Canada-approved treatments for retinal and other conditions. Cost may be a consideration but not at the expense of a person’s vision and their function.

Survey Highlights:vi

  • Canadians are virtually unanimous (97%) in agreeing (71% strongly/26% somewhat) that they ‘have a right to the best medications that are approved for use in Canada.’
  • Likewise, more than nine in ten (95%) agree (64% strongly/31% somewhat) that their physician ‘should have the right to prescribe the best medication regardless of the cost to the healthcare system.’
  • Nine in ten Canadians (90%) agree (47% strongly/44% somewhat) that ‘patients suffer when treatment decisions are influenced by the cost of a medication’, and two in three (67%) agree (18% strongly/49% somewhat) that ‘doctors feel pressure to prescribe drugs based on the cost to the healthcare system.’Most of the medical specialists and family physicians that were surveyed agreed that therapeutic recommendations based on cost containment restrict their autonomy as medical professionals to be able to determine the appropriate treatment for their patient. Three-quarters of those surveyed also say they have witnessed a patient’s health suffer at some point in the past year because they were unable to afford better medications.Survey Highlights:vii
  • More than nine in ten doctors (93%) say that ‘being unable to prescribe the most appropriate treatment because of cost is a barrier to good patient care.’
  • Nine in ten doctors (91%) agree (49% strongly/42% somewhat) that overall quality of life of patients is negatively affected when treatment choice is impacted by cost, while 90% agree (57% strongly/33% somewhat) they should be able to prescribe the most effective medication for patients regardless of cost.
  • Eight in ten doctors (83%) agree (36% strongly/47% somewhat) that the cost of certain drugs regularly prevents them from prescribing the best medication for their patients.“As a physician working with patients and their families to understand a diagnosis and to help them find the best treatment for their eye condition, it is frustrating to have to tell them that the best treatment for them might be out of reach because of what our healthcare system is willing to pay for,” explains Dr. David Wong, MD, FRCSC, Ophthalmologist-in-Chief, Diseases and Surgery of the Vitreous, Retina, Macula

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and Choroid, Associate Professor of Ophthalmology and Vision Sciences, Department of Ophthalmology and Vision Sciences, Faculty of Medicine, University of Toronto, St. Michael’s Hospital. “This leads to outcomes as avoidable and regrettable as blindness when the right treatment at the right time is denied to patients, and could maintain their eyesight.”

For more information about the Eye See You campaign, please visit www.eye-see-you.ca

About the IFA

The International Federation on Ageing is an international non-governmental organization (NGO) with its headquarters in Toronto, Canada. Its goal is to be a global point of connection of experts and expertise that help to contribute to the dialogue on effective policy towards healthy aging.

Media contact:

energi PR
James Thayer
416-425-9143 ext 208 James.thayer@energipr.com

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i i http://www.cnib.ca/en/about/media/vision-loss/pages/default.aspx ii ii http://www.cnib.ca/en/about/media/vision-loss/pages/default.aspx

iii Canadian Council of the Blind, Canadian National Institute of the Blind, and the Foundation Fighting Blindness (2015). Patient Summary.

https://www.cadth.ca/anti-vascular-endothelial-growth-factor-drugs-retinal-conditions

iv Canadian Council of the Blind, Canadian National Institute of the Blind, and the Foundation Fighting Blindness (2015). Patient Summary.

https://www.cadth.ca/anti-vascular-endothelial-growth-factor-drugs-retinal-conditions

v Angiogenesis Foundation (2012). Advocating for improved treatment and outcomes for wet age-related macular degeneration.

http://www.mdfoundation.com.au/resources/Australia_AMD_Whitepaper.pdf vi Ipsos Survey, June 2016 www.ipsos-na.com
vii Ipsos Survey, June 2016 www.ipsos-na.com

PRESS RELEASE – MARRAKESH TREATY REACHES 20 RATIFICATIONS NEEDED TO ENTER INTO FORCE

From the World Blind Union – FOR IMMEDIATE RELEASE:

Toronto, June 30th, 2016 – Today is an historic day as Canada became the 20th country to ratify the Marrakesh Treaty (full name is the Marrakesh Treaty to Facilitate Access to Published Works by Visually Impaired Persons and Persons with Print Disabilities).
The twenty ratifying countries will be able to enjoy the benefits enshrined in the treaty that are meant to extend the same access to literature and information for print disabled persons that non-print disabled persons already enjoy.

“This is another historical day for our movement,” said Arnt Holte, President of WBU. “It was a great victory when we managed to get a treaty securing accessible books for blind and print disabled persons, but the real victory was achieved today – when Canada became the 20th country to ratify the Marrakesh Treaty.
The treaty will enter force in three months, on September 30th, and then millions of blind and partially sighted persons will be able to access literature and educational materials, enabling them to better participate in their society,” he added.

The WBU led the international campaign in partnership with the World Intellectual Property Organization (WIPO) to achieve the development of an international treaty that would put an end to the global “book famine,” which refers to the less than ten percent of published materials being available in accessible formats and often less than one percent in developing countries. The great achievement today offers much cause for celebration for the WBU and its partners.

“After many years of hard work by countless people in the blindness community and partners from a range of sectors, we are now at the start of a new phase of our work,” said Maryanne Diamond, WBU Chair of the Right to Read campaign and a leader in the fight for the Marrakesh Treaty.

However, we still have much work to do in order to end the book famine. “As we celebrate and look to the future, we cannot forget that worldwide ratification is still a long way off,” said Ms. Diamond. “We need to continue our work together to ensure the treaty can be implemented and used by blind and print disabled people irrespective of where they live in the world,” she added.

The WBU calls for every single country to ratify the treaty, and then to effectively implement its provisions for the production and cross-border sharing of accessible works in order to achieve the treaty’s overarching goal of furthering the human rights of persons with print disabilities by promoting their access to literature and information.

To learn more about the Marrakesh Treaty, how it will help end the book famine as well as about our Ratification and Implementation Campaign and what you can do to encourage your government to ratify the treaty, visit our Campaign Page: http://www.worldblindunion.org/ English/our-work/our-priorities/Pages/right-2-read-campaign.aspx

The World Blind Union (WBU) is the global organization representing the estimated 285 million people worldwide who are blind or partially sighted. Members consist of organizations run by 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.wbu.ngo

For further information, please contact:

Caitlin Reid, Communications Officer, World Blind Union

Caitlin.Reid@wbu.ngo

When It Comes To Eye Health: Take Action, You Have A Choice

drop-cap-part of our mandate is to promote eye care and prevent blindness, as well as implement measures to conserve sight, create a close relationship with the sighted community, and provide employment opportunities for those with vision loss.

Vision loss is a difficult condition to manage, as it has no boundaries with respect to gender, income, ethnicity, culture, other disabilities, or age. What is alarming to us is that in many instances, vision loss is easily preventable and sometimes is simply symptomatic of other health issues that can be controlled. This is why as an organization, we are committed to a proactive integrated health approach for early detection — improving the quality of life for all Canadians, including you.

Eye health can often be the very lowest medical concern to be attended to for Canadians because, in the majority of cases, one does not die from eye disease. This is why it is essential for you to bring eye care to the forefront of your health, so that the best possible treatment can be provided before major problems occur. Permanent damage can occur prior to major symptoms, which is why acting now on your vision health is critical.

Read the rest of the article online Here.

Progress on Accessibility Legislation

This morning, June 22, 2016 CCB President Louise Gillis and other Canadians with disabilities attended a speech by the Honourable Carla Qualtrough, Minister for Sport and Persons with Disabilities. Minister Qualtrough made an important announcement on an engagement process that will lead to the passage of Accessibility Legislation.

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CCB celebrates progress of the Right to Read campaign

On Monday, June 13, 2016 Canadian Council of the Blind (CCB) had great reason to celebrate on Parliament Hill with the Hon. Carla Qualtrough, Minister of Sport and Persons with Disabilities & The Hon. Navdeep Bains, Minister of Innovation, Science and Economic Development on the passing through Commons the act to amend the Canadian Copyright Act therefore displaying Canada’s commitment to the breaking down of barriers for people with print disabilities.

Thank you to all of our CCB members who sent letters and talked with their local Members of Parliament to move this forward!

This event celebrated an achievement that was some time in the making: after a few years of progress, Canada is set to sign on its support for the Marrakesh Treaty, joining the approximately 17 other countries that have already done so.

The Marrakesh Treaty will allow greater access to reading material for Canadians with print disabilities, and Bill C-11 will help to improve international access to copyrighted material for persons with print disabilities.

CCB has worked with the World Blind Union (WBU) and CNIB since the inception of the Right to Read campaign.  As noted on the WBU website:

The current international system does not allow for cross-border sharing, leading to the needless duplication of books, which uses up already limited resources. However, once the Marrakesh Treaty comes into force, cross-border sharing will be legal, which will help to avoid the duplication of reproduction efforts in different countries. The Treaty will also enable countries with large collections of accessible books to share them with blind and print disabled people in countries with fewer resources. Cross-border sharing is essential for combating the book famine as blind and partially sighted people are among the poorest of the poor, and organizations for the blind often do not have the resources needed to produce enough materials in accessible formats.

Blind and print disabled people want to be able to go to a bookstore or library and pick up and read the new bestseller like everyone else. Blind and partially sighted children want to be able to go to school and to become literate just as much as their sighted peers do. It has been well documented that education is the key to unlocking the future potential of children, enabling them to become gainfully employed as adults and participate effectively as students, parents, coworkers, and citizens in their communities and their families.”

Technology on a Budget Workshop Open

The Halifax based Access & Awareness NS Chapter of the Canadian Council of the Blind is pleased to announce that registration for its one day Workshop entitled “Technology on a Budget” is now open.  This Workshop is open to blind and partially sighted individuals, their families and supporters.  We encourage you to register early as space is limited and priority will be given to blind and partially sighted registrants.  The email address for registration is noted below. The deadline date for registration is Friday, May 27, 2016 at 4 p.m.

 

The Workshop will run from 9 a.m. until 4 p.m., with registration beginning at 8:30 a.m. in the gym at the Atlantic Provinces Education Authority (APSEA), 5940 South Street, Halifax.  It’s the first building on the left as you go down the driveway and parking is available in the lot on the right side of the driveway. APSEA is an accessible location. Sighted guides will be available at the door.  Morning refreshments, a boxed lunch and afternoon beverages are free and tickets for a wide variety of door prizes can be purchased for the sum of $1.00 per ticket upon registration.

 

We are pleased to welcome, as one of our presenters, Jeffrey Stark from Kanata, Ontario.  Jeffrey manages a program for the Public Service of Canada which has been internationally recognized for the unique services which it provides to persons with disabilities, injuries, or who require technical or ergonomic adaptations in the workplace. Jeffrey is one of the founding members and lead developer for theInclusiveAndroid.com community site which provides a place to share

information, ideas, apps and tips among the community of people with disabilities who are Android users from across the world and he will be sharing his extensive knowledge and experience with us.

 

Other Workshop leaders will include well known local technology aficionados Barry Abbott from our CCB “GetTogether with Technology” program, Chris Judge, technology specialist with CNIB Halifax and Maggie Lyons-MacFarlane, a graduate student in Education at Mt. St. Vincent Universitywho will share her insights and lived experience with technology from the perspective of a student with low vision. In our panel on funding and supports, we will explore the question of what resources are available to help people with disabilities who require assistive technology.

 

This Workshop promises to be exciting and information packed so, again, please register early!

 

To register please email:  CCBWorkshop16@outlook.com When registering, the following information is required:

  1. Your name,
  2. Your email address or telephone number,
  3. Which workshop from each of the four concurrent sessions you wish to attend, and
  4. Whether or not you have any dietary concerns.

Attached is the Schedule for the day on which the concurrent sessions are listed. Please remember to note which sessions you wish to attend when you are registering.

 

If further information is required, please email Chapter Chair, Pat Gates, at

patricia.gates@bellaliant.net

 

We look forward to meeting you there!

 

Patricia (Pat) Gates

Chair,

CCB Access & Awareness NS Chapter, on behalf

of the 2016 Workshop Planning Committee

The Mail-o-gram Tournaments have been renamed!

Canadian Council of the Blind is pleased to announce that the CCB Mail-o-Gram Bowling Tournament and the CCB Mail-o-Gram Cribbage Tournament have both been renamed to bring these tournaments into the current  age of technology.

Therefore, effective immediately, the bowling tournament will now be called the CCB Email Bowling Tournament and the cribbage tournament will be known as the CCB Email Cribbage Tournament going into the future.

The 2016 CCB Cribbage Tournament begins in early May and all members are invited and encouraged to participate.  Further information will be forthcoming very soon!

2016 Email Cribbage Tournament begins Sunday, May 1st

The 2016 Email Cribbage Tournament is about to begin!

Your Chapter must be registered on or before Sunday, May 1, 2016. The closing date for the tournament is Friday, May 27, 2016.

To register and receive the necessary forms please contact:

Bill Rizzo, Chair, National Tournaments

Phone: 613-549-6196         E-mail : bill.rizzo@sympatico.ca

Information packages will be sent out to you immediately following your request.

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