VISIONS – January Edition

Cover of the January Issue of VISIONS newsletter showing a winter scene.

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VISIONS

Canadian Council of the Blind Newsletter

January 2021

“A lack of sight is not

a lack of vision”

President’s Message

Happy New Year!

I hope that everyone was able to enjoy the holiday season. It was very different for us with so many restrictions regarding gatherings with friends and family. I know it was very different for me with family in so many places that we could not come together as we traditionally did but through FaceTime and other telecommunications we managed to see or talk to all where ever they are living.

The most interesting “visit” was with three of my nieces social distancing around a fire pit in the driveway of their parents’ home in plus 12 degrees, no snow, lots of sunshine and warm jackets. The best part is the house is in the country, lots of cars on the road slowing down to see what was going on and those who knew us tooted their horns. This is our new memory and may even be a “tradition”.

As we move into 2021 and now vaccines becoming available that this year will be an improvement. We all need to continue to be very vigilant in maintaining social distancing (which is not easy), wearing our masks and staying close to home we will get through this one too. Remember to maintain medical appointments and eye care.

CCB staff continued to be busy as usual mostly working from home and this practice will continue for some time into the future. This has worked well but does take longer due to things that need to be done because of the number that can be in at one time. Teleconferences with other organizations and government continued until a few days prior to Christmas.

As January comes in work will continue on preparing for upcoming special meetings and some on line White Cane Week programs.

I wish everyone a Happy & Healthy New Year.

Best Wishes,

Louise Gillis, National President

Announcements

White Cane Week 2021

Get ready for a different, but still fun and exciting awareness week from February 7 to 14. This year’s events will have to be limited due to the pandemic, but will still include countless local activities. Please visit the CCB website to keep yourself updated on the many exciting events that will be taking place this year across the country. And stay tuned for reports on events in upcoming newsletters!

AIRA and the CCB Organization Plan:

Aira is proud to partner with The Canadian Council of the Blind to make visual interpreting services available to more people. To encourage CCB members to try our service, we are offering special pricing to CCB’s members in the form of Power Plans.

These plans are as follows:    

•      Intro Power Plan, 30 minutes per month, $20.00 USD       

•      Standard Power Plan, 140 minutes per month, $99.00 USD. 

These plans are available for individuals who sign up through December 31, 2021 to all members in good standing of the CCB, its chapters, affiliates

and divisions. Membership will be verified through our Customer Care Team.

Aira provides visual information through our smartphone app and trained agents, 24/7, 365 days per year. Agents are screened and adhere to strict security protocols. Our app uses the camera of your smartphone plus GPS and other powerful tools to give you the visual information you need, on your terms. To learn more about Aira, visit our web site at www.aira.io or call our Customer Care Team at 1.800.835.1934.

Aira, the description of life, on your terms www.aira.io Us and Canada 1.800.835.1934

Australia: +1-800-765-096

New Zealand: +64-800-425-451

UK: +44-800-046-5668

Exciting Scholarship News:

The CCB is looking for 9 candidates who have an interest in a career in finance who could benefit from a new scholarship program.

The CFA Institute Investment Foundations® Program (previously called

Claritas) covers the essentials of finance, ethics, and investment roles, providing a clear understanding of the global investment industry.

The Quartic package for the CFA Institute Investment Foundations Program ® includes:

Quartic Online: A series of inspirational videos covering everything students need to know to understand each of the chapters.

Question bank: For testing knowledge and honing exam skills with extensive question bank.

Mock exams: Two full-length online mock exams.

Tutor support

Classroom courses

Certification (on passing the exam): CFA Institute Investment Foundations Certificate.

For more information on this exciting opportunity, please contact the

CCB National Office:

Toll-Free 1-877-304-0968

E-mail:

[email protected]

A CCB/FBC/IFA initiative on behalf of those living with vision loss requesting priority access to COVID-19 vaccinations.:

Please find below for your information, a letter signed by The Canadian Council of the Blind, Fighting Blindness Canada and The International Federation on Ageing requesting priority access to vaccinations for those amongst us living with vision loss.

The letters (30 letters in all) were sent to Prime Minister Trudeau, Minister of Health Hajdu, Minister for HRSDC Carla Qualtrough and personally addressed to all Provincial and Territorial Premiers and Ministers of Health. This letter also appeared on page 3 in the Hill Times. This will put our request for Immediate action in the hands of every Federal, Provincial and Territorial member and over 22,000 others including members of government as well as politically active and motivated recipients of the paper.

Thanks for your continued support of these important initiatives.

Dear Prime Minister Trudeau, Minister Hajdu, and Minister Qualtrough,

We at the Canadian Council of the Blind (CCB), Fighting Blindness Canada (FBC), and the International Federation on Ageing (IFA) are writing you today on behalf of over 1.5 million Canadians who are blind, deaf-blind, and partially-sighted and who are experiencing special challenges due to the impact of the COVID-19 pandemic. We believe it is imperative that people living with vision loss be given a priority position, close behind our heroic first responders and vulnerable seniors, with respect to being vaccinated against COVID-19. People living with vision loss are members of a vulnerable community, whose members were known to be living with economic, social, and emotional stress, even before this pandemic, that research has shown to be over and above that experienced by the sighted community.

Earlier this year, in response to anecdotal reports of the stresses people with vision loss were experiencing as a result of the pandemic, the CCB conducted a survey in which those living with vision loss were asked to report the effect the pandemic was having on their daily lives. On April 30, we released the results in a report entitled The Impact of the COVID-19 Pandemic on Canadians Who Are Blind, Deaf-Blind, and Partially-Sighted.

The results were astounding. Our survey’s 572 respondents revealed the existence of a high level of stress, anxiety, fear, and even depression within our vision loss community. The respondents told us that:

•      Their current stress levels were high – 40% of respondents said they were experiencing more than moderate stress, with 29% rating their stress level at 7 or higher (on a scale of 1 to 10).

•      They were very concerned about social distancing and felt unsafe leaving their homes. They were unable to judge their distance from others and were concerned that others, unaware of their vision loss, tended to come too close.

•      They were particularly concerned that the effect of the added stress from the pandemic on their mental health may cause them to become overwhelmed.

•      They were anxious about their ability to access a doctor or health care practitioner and were concerned that social distancing and patients-only medical appointments meant that they would be unable to have someone accompany them when keeping necessary appointments with doctors or at clinics or hospitals. This is of particular concern to people with vision loss who require a sighted guide to assist them with their out-of-home activities.

•      They were concerned that their inability to keep eye doctor appointments may cause them to incur additional vision loss. This is of particular concern for those having regular injections for the treatment of age-related macular degeneration or diabetic retinopathy.

•      They saw shopping as unsafe, often experiencing fear, stress, and anxiety due to their inability to determine distance from others. Additionally, they felt great frustration with being unable to adequately communicate with cashiers, who were usually behind plexiglass screens, making negotiating payment and conversing difficult.

•      They were particularly concerned about their ability to meet financial obligations. This is of particular concern since people living with vision loss are economically vulnerable and are generally recognized as being on the lower end of the socioeconomic scale.

•      Many (about half) had a personal care worker entering their home, half of whom weren’t wearing masks or other proper personal protective equipment.

•      Many asked to work from home discovered they didn’t have the accessible devices or technology required to do their jobs, and that employers had refused to provide or fund necessary equipment.

Since the major eye diseases causing vision loss are often associated with aging, we are seriously concerned that these individuals are particularly susceptible to the impact of COVID-19, both on account of their vision loss, as described above, and also due to advancing age.

When asked to describe the impact that the COVID-19 pandemic was having on their lives, one of the respondents expressed the difficulties he/she was experiencing as follows:

“What is affecting my mental health is this prolonged and extreme isolation. As a blind person I already live a fairly limited life when referring to freedom of movement and independence and now even that small wedge of my active life has been completely eradicated.”

This community as a whole is reaching out for your help in relieving the additional burdens and stress resulting from the impact of the COVID-19 pandemic on their daily lives. As primary stakeholders to this vulnerable community, we are asking you, as decision-makers, to take the time to understand their situation and to ensure that people living with vision loss be given priority with respect to COVID-19 vaccination. We seek this opportunity to regain that “small wedge of active life” and to minimize the isolation and loneliness that those with vision loss are currently experiencing.

In this time of the pandemic and with its consequential and dramatic impact on the vision loss community, your timely consideration of this most important request will be greatly appreciated.

Yours sincerely,

Louise Gillis, President, Canadian Council of the Blind

Doug Earle, President and CEO, Fighting Blindness Canada

Dr. Jane Barratt, Secretary General, International Federation on Ageing

CCB Young Voices:

A new collective of young adults at CCB is advocating for change. Issues like access to technology, rewarding careers and isolation in our communities are just some of the things that CCB Young Voices is here to change.

Launched in 2020, CCB’s Young Voices is a nationwide program offered by CCB to all of our chapters across Canada. The program provides a space for young adults in the blind and low vision community, ages 19-35 to stay active, share information and build a strong network.

When given access to the proper resources and technology, people with blindness and low vision can be extremely successful leaders. CCB is proud to be a voice for change for the Blind and Low Vision community in Canada.

JOIN US!

Register below and follow our social media platforms to stay connected with us!

Registration for CCB Young Voices

[email protected]

AMI Documentary:

A one hour documentary called White Cane Journeys, featuring CCB President Louise Gillis, debuted on AMI-tv on Friday, December 25.

Here is the link to the documentary on YouTube:

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Assistive Technology

Introducing a New Assistive Technology Blog: Windows from the Keyboard Tips

Attention: This blog series has now ended. If you have an idea for a future GTT blog series email it to:

[email protected]

Hello. This is Gerry Chevalier from the GTT Edmonton Chapter. This weekly blog provides tips that I find useful as a keyboard user of Windows 10 and Office 365.

The tips do not require a screen reader unless specifically noted.

Thus, the tips apply whether you are a keyboard user or low vision mouse user.

Microsoft Excel – Reviewing Formulas

When arrowing up/down/left/right among the cells in a spreadsheet the screen reader will announce the value of the cell and if there is a formula attached to the cell, the screen reader will also tell you.

You can edit the cell’s data/formula by pressing F2. To quickly review formulas in multiple cells without the need to press F2 on each cell, simply press Control+` and the display will revert to formulas instead of values. As you arrow around the cells, you will now hear the screen reader announce the cell formulas instead of cell values. Press

Control+` to revert to displaying cell values.

That’s it for this blog series on Windows from the Keyboard Tips.

Don’t forget to contact CCB if you have ideas for future blogs. I hope you have enjoyed reading the tips as much as I have enjoyed researching and writing them.

Here’s a bonus tip courtesy of Albert Ruel to round out the series.

Many of the tips have focused on Microsoft Office. There is a user support email list for those who use the Office suite of programs with assistive technology such as screen readers and magnification software. To learn more, visit:

Office-Accessibility at Groups.IO ( https://groups.io/g/office-accessibility )

Or you can subscribe directly by sending an email to:

[email protected]

Further Learning:

A recent CCB presentation on Excel has been posted to the CCB podcast feed. Following are the show notes and download link.

Show Notes: December 16, 2020

Theme: Excel from the Keyboard Intro (

Use the above link to download the podcast audio file.

In this 18 minute presentation, Gerry Chevalier demonstrates the experience of using Excel from the keyboard. Gerry demonstrates building a simple grocery shopping list to show basic keyboard navigation and screen reader commands to operate Excel. It is not an instructional Excel podcast but just a demo of what it’s like to use Excel with a screen reader and no mouse.

In the News

Gene Therapy Shows Promise for a Form of Blindness, but Is It a Cure?

Study of treatment for an inherited form of vision loss raises pricing questions for drugs with long-term benefits.

A clinical trial of a gene therapy for an inherited condition leading to vision loss made an unexpected finding: Patients treated in one eye experienced improvement in the other eye as well.

Researchers gave the experimental therapy to 37 people with Leber hereditary optic neuropathy, or LHON, a rare genetic disease that can lead to irreversible vision loss, according to a paper published in Science Translational Medicine. The disease, which primarily affects young men, can cause sudden loss of central vision in one eye, usually followed by the other eye within a short period of time.

Patients in the study received a single injection of the gene therapy in one eye and a placebo, a sham injection, in the other, with the idea that the drug’s effectiveness could be determined by comparing vision changes in the two eyes. Instead, after 96 weeks of follow up, the researchers found that 78%, or 29 patients, had an improvement of vision in both eyes.

“The eye turns out to be a really good place to do gene therapy,” said Mark Pennesi, chief of the Paul H. Casey ophthalmic genetics division at Oregon Health & Science University’s Casey Eye Institute, who wasn’t involved in the study. Dr. Pennesi said 11 gene-therapy trials for eye disorders are under way at OHSU and more are set to start soon.

Growing numbers of gene-therapy trials have been launched since the Food and Drug Administration approved Luxturna in 2017 to treat another form of inherited vision loss. Developed by Spark Therapeutics, Luxturna uses an injection in the eyes to deliver a normal copy of the RPE65 gene directly to retinal cells. These cells produce a protein that converts light into an electrical signal in the retina and restores vision.

Earlier this year, OHSU treated the first patient in a clinical trial by Editas Medicine Inc., using a Crispr gene-editing therapy for the rare eye disorder Leber congenital amaurosis 10. The Crispr enzymes, injected directly into the eyes, are designed to edit the mutation that causes it.

While it is still early days for these therapies, promising results have raised broader questions about when, if ever, the therapies can be considered potential cures—and about how to price therapies that are given once but intended to last decades, if not a lifetime.

These questions were already being debated when Spark announced an $850,000 price tag for Luxturna, and they are likely to intensify in the wake of the study.

GenSight Biologics, the French company that makes Lumevoq, the gene therapy described in the paper, said it has filed for approval for the drug with the European Medicines Agency and expects to seek U.S. Food and Drug Administration approval next year.

Earlier this month, Gensight said a physician in France received a temporary use authorization from French medical authorities to treat a patient with Lumevoq.

GenSight co-founder and Chief Executive Bernard Gilly said the company charged €700,000 for that patient’s treatment, the equivalent of $849,000. “This is not the final price,” he said. “We believe this is the price we can negotiate” with governments and insurers.

Dr. Gilly said the price is derived from factors such as direct and indirect costs associated with blindness, quality of life, medical costs over a patient’s lifetime and other considerations, including Luxturna’s pricing.

The question of whether or not a treatment is “durable”—effective and lasting over a significant period of time and therefore a potential cure—has become intertwined with drug pricing. “If I can correct the defect for the rest of the patient’s life, that is a significant savings for the community,” Dr. Gilly said.

A Spark Therapeutics spokesman said the company “priced Luxturna responsibly for a one-time gene therapy for a life-altering disease that disproportionately affects children and young adults and progresses to blindness in nearly all cases.”

The company said Spark agrees to share the risk with certain health insurers by paying a rebate if a patient fails to meet specific outcome measures both in the short term of 30 to 90 days and the long term, 30 to 33 months. Data for patients five years after treatment “continue to support the safety and efficacy of Luxturna,” the spokesman said.

Vence L. Bonham, Jr., an associate investigator at the National Human Genome Research Institute, earlier this year published views of sickle-cell disease patients, physicians, and caregivers. He said patients and families wrestle with whether a gene therapy is a potential cure when assessing the risks and benefits of enrolling in clinical trials of cutting-edge technology. Even if a genetic therapy is effective, cells may already be permanently damaged.

José-Alain Sahel, chair of the ophthalmology department at the University of Pittsburgh School of Medicine and one of the authors of the Science Translational Medicine paper, said patients in the trial whose vision improved “are not going back to 20/20 vision,” he said.

“It is not a perfect cure.”

“With gene editing”, OSHU’s Dr. Pennesi said, “you are approaching a cure, because if you are able to cut out the mutation it is not going to come back. But I think we still have to be a little cautious. You may not be able to treat every single cell you want.”

Mark Trusheim, strategic director of MIT’s New Drug Development Paradigms program, a think tank, said that in conversations, patient advocates, drug developers, insurers and others preferred the word “durable” to describe treatments, rather than “cures.” “Cures imply restoration to some undiseased state,” Mr. Trusheim said. “When you say cure, many people think not only is the disease progression stopped but the damage is reversed. Few gene therapies actually reverse damage.”

Researchers in the Science Translational Medicine study reported different measurements of benefit. The patients’ vision loss had already lasted between six and 12 months. After receiving the treatment, their ability to read letters on the eye chart significantly improved. They filled out detailed surveys about daily activities, and many reported they could recognize faces and read again. In cases where both eyes showed improvement, the eye treated with the gene therapy improved on average 66 days sooner than the untreated eye.

Hemant Khanna, associate professor of ophthalmology and visual sciences at the University of Massachusetts Medical School, who wasn’t involved in Wednesday’s study, said the finding of benefit in the untreated eye, while exciting, makes it more difficult for investigators to understand how much improvement they observed. “We may need to rethink the way we design clinical trials,” Dr. Khanna said.

Researchers in the study also reported on separate research they conducted in four monkeys that led them to suggest the intereye transfer might have occurred in the optic chiasm, where the left- and right-eye optic nerves intersect. The researchers said more research is needed to understand why both eyes benefited.

Dr. Gilly of GenSight said cells in the retina aren’t replaced over a patient’s lifetime, so “there is no reason why the efficacy will stop.” But he said more time is needed. “I cannot bring any proof of this,” he said. “It is too recent.”

Amy Reif’s 10-year-old daughter, Hannah, received Luxturna, the Spark Therapeutics gene therapy, in 2018 to treat inherited retinal disease.

She said it has made a significant difference in her daughter’s life.

After the treatment, Hannah told her parents she saw a star and a rainbow for the first time. “Hannah took it all in stride,” said Ms. Reif. “My husband and I cried. We were thrilled.”

Hannah’s improved vision allows her more independence. She now uses the microwave by herself; before, she couldn’t see the numbers on the buttons.

She asked her mother if she will eventually be able to learn to drive.

Ms. Reif told her daughter she doesn’t know the answer. “I am not sure if she will be able to drive. We will see what happens,” Ms. Reif said.

“We certainly hope it is going to last a lifetime,” said Ms. Reif, “or at least last a very long time. But the bottom line is we don’t know.”

By Amy Dockser Marcus

REMINDERS

Membership Madness

Hi Everyone!  Becky from the office here. Memberships for 2021 are now overdue.  We now have an online membership renewal page, good for individuals or chapters.  You can find it here, https://ccbnational.net/shaggy/membership/

White Cane Magazine Order Extension

You can still order the White Cane Magazine for your chapter by emailing Becky at [email protected] .  It promises to be a good edition, and the order due date has been extended to January 18th just for you.