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.

Nova Scotia Health Authority (Central Zone) Diversity Bursary: Deadline February 5, 2016

The Nova Scotia Health Authority (Central Zone)  is taking steps to create a more diverse workforce that better represents the communities we serve. Post-secondary students who identify as African Nova Scotian, Aboriginal, immigrant or a person with a disability are invited to apply for a diversity bursary. Students must be:

  • Continuing studies in a health profession
  • Attending a Canadian post-secondary institution that is recognized by the Association of Universities and Colleges of Canada
  • A resident of Halifax Regional Municipality or West Hants with an intention to practice in the area.

 

Applications are available at  http://www.cdha.nshealth.ca/diversity-inclusion.  For more information please contact Anna Jacobs, anna.jacobs@nshealth.ca, (902) 460-6888.

Applications will be evaluated by Community Health Boards on a number of factors including: community involvement, financial need, educational goals and field of study in health care.

Treatment Access for Canadians Living with Wet Age-Related Macular Degeneration May be Restricted

Treatment Access for Canadians Living with Wet Age-Related Macular Degeneration May be Restricted

Do you have age-related macular degeneration (AMD)? Then, this story matters to you. Do you care about fair and equitable access to safe medications? Then, this story matters to you too.

This story matters to Canadians living with AMD because regulators are getting ready to make recommendations that could restrict access to sight-saving drugs across the country. But, this is also a much bigger story that matters to all Canadians because this particular regulatory decision would set a new precedent regarding the use of off-label medications.

Because this is such an important decision, the Foundation Fighting Blindness has been working closely with the CNIB and the Canadian Council of the Blind to be sure that patients’ perspectives and experiences factor into the decision making process. Today, we are sharing this update because we want our communities to know that we have taken a firm stance together and have formally asked the regulators to suspend their decision making process until adequate safety data is available.

Inequitable Treatment across Canada

Age-related macular degeneration (AMD) is the leading cause of blindness in people over the age of 50. There are two forms of AMD – dry AMD and wet AMD. Dry AMD is the most common form of the disease and is characterized by the gradual loss of central vision. Sometimes, this dry form of AMD will progress into the wet form of AMD, which is when most vision loss occurs. Wet AMD can have a sudden onset and is characterized by abnormal blood vessel growth in the eye. Fortunately, there are effective sight-saving treatments for wet AMD called anti-VEGF drugs. Vascular endothelial growth factor (VEGF) is normally produced in our bodies and is involved in the growth of blood vessels. However, the uncontrolled growth of blood vessels in the eye causes vision loss in wet AMD. Anti-VEGF therapies prevent (and even reverse) vision loss by removing excess VEGF from the eye. In Canada, there are two anti-VEGF drugs, Lucentis (ranibizumab) and Eylea (aflibercept), which have been approved to treat a variety of retinal diseases, including wet AMD. Avastin (bevacizumab) is an anti-VEGF drug that was designed to treat cancer, but is used “off-label” to treat retinal diseases.

Notably, Avastin is significantly cheaper than both Lucentis and Eylea. In addition, some studies have shown that is functions effectively as a sight-saving treatment. For these reasons, many doctors have opted to use Avastin as a first line of treatment, especially when their patients cannot afford the alternative.

Who pays for your medications?

In Canada, we consider health care to be right. Across the country, many of us are fortunate to receive excellent medical care, paid for by Canadian taxpayers. Accessing medically necessary drugs, however, is less straightforward. Some people have private insurance while others depend on publicly funded drug programs, such as the Ontario Public Drug Program, which is widely used by people over the age of 65.

If the public drug program in your province covers the drugs that you need, then everything usually works out well. Unfortunately, not all drugs are covered, and different provinces cover different drugs. This means that you have access to different drugs depending on where you live. In Alberta, for example, the newest anti-VEGF drug for treating wet-age related macular degeneration (Eylea) is not covered by the public drug program.

Comparing Different Treatment Options to “Optimize” the Approach

Regardless of where you live, your access to anti-VEGF drugs to treat retinal diseases, including wet AMD, is at risk. This is because the Canadian Agency for Drugs and Technologies in Health (CADTH) is currently evaluating the monetary cost and clinical efficacy of different anti-VEGF drugs (including Lucentis, Eylea and Avastin). They are conducting this “Therapeutic Review” with the goal of making recommendations to “optimize” how these drugs are covered by provincial drug plans. The word “optimization” is used to signify that decision makers are looking for ways to save money without having a negative impact on health outcomes. Optimization implies that decisions are being made within constraints; for example, each province has a limited amount of money to spend on its public drug program. If you are interested in the fine details of the review, you can learn more on the CADTH website.

In brief, CADTH is conducting this review because they realize that the prevalence of people living with wet AMD and other retinal diseases will increase significantly as the population ages, and they are aware that Avastin is considerably less expensive than the other anti-VEGF drugs. (Avastin is an anti-VEGF drug that was developed to treat cancer, but is sometimes used “off-label” to treat wet AMD.) In addition, there are now some results from clinical studies that compare the effectiveness of the different available anti-VEGF drugs.

Patient Evidence Matters

At the beginning of this review process, the Foundation Fighting Blindness was invited by CADTH to submit patient evidence. To do this, we collaborated with the CNIB and the Canadian Council of the Blind to share the experiences of people who are taking anti-VEGF drugs to treat their eye diseases. To learn more, we developed a short survey and invited people to share their stories. Thank you to everyone who provided feedback!! Because of you, we were able to develop a patient evidence submission that contained a diversity of experiences with voices from across country.

In the patient submission, we emphasized that patients care about safe and equitable access to drugs. We told CADTH that some people were having difficult experiences in British Columbia, where access is more restrained. We told CADTH that although many people shared positive experiences with taking anti-VEGF drugs, others also shared more negative experiences. Because people had different experiences with different anti-VEGF drugs, we emphasized the importance of patient choice. You can read the full collaborative submission of patient evidence on the CADTH website here.

Recently, CADTH released a “Draft Science Report” that summarized the evidence that they considered (including our patient submission). As a patient group, we were invited to provide feedback on this Draft Report.

After reading the Draft Science Report, we were all surprised for two reasons. First, the report seemed to misinterpret the patient evidence that we submitted. Second, even though the report repeatedly acknowledged the lack of available safety data, it concluded that the drugs have equivalent safety risks. To us, this was a red flag because safety is so important to patients. In fact, sufficient safety data is a necessary criterion for embarking on a Therapeutic Review.

For these reasons, we have asked CADTH to suspend making any further recommendations until there is sufficient safety data available to justify the analysis. We sincerely hope that CADTH will consider our feedback because we believe that patient evidence is an essential component to effective decision making for the health of Canadians.

Your voice still matters. Please take the AMD survey or call to let us know about your experiences with anti-VEGF drugs. There will be additional opportunities for patient input before a decision is made. As a patient group, our job is to bring your voice to the table. We are honored to have this responsibility.