Retina Association of New Zealand: Resources section

1 From the Editor

2 Letter to the Editor

3 From the President’s Desk

4 The Cost of Blindness in NZ

5 The Fred Hollows Foundation

6 Snippets

7 Research - Intravitreal Avastin

8 Coping – Computer Hints

9 Creating an Accessible Environment

10 Tiresias

11 Snippet

12 People

13 Book Review

14 Notices

15 List of Publications

Mission Statement

To promote public awareness of retinal degenerative disorders

To provide information and support

And to foster research leading to treatment and an eventual cure

Editor

Susan Mellsopp

108B Comries Rd

Hamilton

Phone: 07 8533 612

Email: editor@retina.org.nz

Deadlines for articles for the winter, spring and summer issues are 31st July, 31st October and 31st January respectively

To order:

EMAIL COPIES: contact the National Secretary if you would like your newsletter emailed to you.

TAPE COPIES: contact the National Secretary if you require your newsletter on cassette tape and advise if you also require a print copy.

National Secretary

Janet Palmer

Retina New Zealand

PO Box 17 242

Wellington 6033

New Zealand

Telephone: 04 299 1801

Fax: 04 472 9490

Email: secretary@retina.org.nz

Janet Palmer will be unavailable during July. Please direct any enquiries to Kaye Newton or Elizabeth East

Peer Support Coordinator

Elizabeth East

Telephone: 04 299 1801

Email: peersupport@retina.org.nz

The Royal New Zealand Foundation of the Blind commissioned Gravitas Research and Strategy Ltd to conduct research into the direct, indirect, and opportunity costs of blindness in New Zealand. They found costs which included financial, time and non-quantifiable qualitative costs incurred by blind and vision impaired individuals. Societal costs are those incurred by society to provide services, treatment, equipment, benefits and other support required to mitigate the effects of vision impairment.

The research data was collected through a review of international and national literature, a review of secondary data sources, eleven in-depth informant interviews, four focus groups with RNZFB members, and a telephone survey of 200 members.

Recognising the individuality of many of the different costs, the study examines how the costs differ in relation to life stage, employment status, gender and location. The focus is on extra, non-optional costs incurred by individuals seeking to participate in society in the manner and extent to which they should be reasonably able to expect to.

The direct financial costs are shown to be substantial including the need to pay for assistance to undertake relatively minor domestic and household tasks, through to expenditure on adaptive equipment. These costs are shown to be varied and unavoidable. Further indirect costs included difficulties faced in purchasing cheaper grocery items, the need for housing in proximity to necessary amenities, and other services and supports which can be more expensive.

Substantial time costs are incurred. Additional time is spent undertaking domestic and personal tasks, travel, study and training. Extra time is spent planning, scheduling and marshalling resources. Time is lost when one is not able to do something immediately, or in waiting for necessary assistance. Time lost can also mean lost opportunities to undertake pleasurable activities and endeavours.

The cost of reduced flexibility, autonomy and spontaneity should not be underestimated. Many opportunities are forgone, often due to difficulties accessing information.

Survey respondents reported varying levels of financial and capital expenditure they credited directly to their blindness or vision impairment. The average cost of home help was calculated as being $75.24 a month, while extra time spent grocery shopping was calculated to be 42 minutes. Indirect financial costs included the restricted ability to take advantage of sales and specials. A more limited range of products were generally purchased.

Communication equipment had proved very costly, while others reported a communication cost as a lack of privacy when requiring others to read personal correspondence and do banking.

Travel costs impacted on many of the respondents. Taxi fares were too expensive, and the loss of travel independence was very significant, particularly the reliance on others. Family members reported high time and financial costs when being relied upon for transportation.

Students identified many challenges to reaching their academic potential. Access to certain subject areas was restricted, career potential reduced, and additional time was spent studying. Parents of vision impaired children reported significant time and financial cost ensuring their children could access the best possible education.

Vision impaired and blind adults have a higher rate of unemployment. Those employed also faced extra time in traveling costs, taxi expenses of over $60 per week, and special assistance within the workplace.

Health and medical costs were usually borne by the respondents, travel to ophthalmologists was reported as taking more than three hours by some rural people. Secondary medical costs related to vision impairment such as bumps, cuts and bruises reduced the quality of life.

Social costs were commonly identified as lost independence, reliance on family members, an inability to identify recreation opportunities, and reduced social contact with friends. The provision of welfare benefits is a societal cost of blindness along with employment support and disability support services.

The research concluded that the costs of blindness in New Zealand are wide ranging and significant. These costs are borne by individuals, their families, and society. Visual conditions generate a number of lost opportunity costs resulting in unrealized life potential in both economic and social areas.

This report can be obtained in full on the RNZFB website, it is also available on tape, in Braille and large print. To order a copy telephone the Foundation’s library on 0800 24 3333. A supplementary analysis of the costs of blindness in New Zealand by Jonathan Godfrey and Deborah Brunning is also available in the above formats.

The Fred Hollows Foundation is an organization which seeks to eradicate avoidable blindness in developing countries, and to improve the health outcomes of indigenous Australians. The Foundation uses a sustainable development approach to achieve its objectives, its main role being as a catalyst and facilitator. The Foundation supports and implements programmes, monitors their progress, and evaluates their impact. A fundamental commitment to long term sustainability is very important.

The Foundation is inspired by the work and example of the late Professor Fred Hollows (1929-1993). Fred Hollows was born in New Zealand, did his medical school training here, and completed his post-graduate work in Wales. After moving to Australia he became the Associate Professor of Ophthalmology at the University of New South Wales. In the 1970’s he began work with the aboriginal communities, and was instrumental in establishing the Aboriginal Medical Services throughout Australia.

During the 1970’s Fred visited over 465 aboriginal communities, 62,000 patients were treated, 27,000 for trachoma, and 1000 operations were performed. In 1985 he began work as a consultant to the World Health Organisation and visited Nepal, Burma, Sri Lanka, India and Bangladesh on short term assignments. A growing disparity between the haves and have nots in eye health saw Fred Hollows make a decision to do something about it. The Fred Hollows Foundation was launched in Sydney in 1992, just five months before his death. Its guiding values include a belief that everyone has a right to sight and that indigenous Australians have a right to the same health outcomes as other Australians. It uses the best technical and organizational approaches to advance its goals, working with local partners to act as the catalyst for change.

Fred Hollows described intraocular lenses as the most expensive little bits of plastic in existence. To make them more accessible to people he raised the money to build IOL lens manufacturing laboratories in Kathmandu (Nepal) and in Asmara (Eritrea). Today the Fred Hollows IOL laboratories produce approximately 250,000 IOL’s per annum for 3.5% of the price of competitors.

Through skills development programmes and the development of new technologies sight has been restored to more than 1 million people worldwide. Today, 13 years on, the Fred Hollows Foundation’s vision is of a world where no one is needlessly blind, and it is still inspired by the vision of Fred Hollows himself.

The Foundation has commitments to project work in Eritrea, indigenous Australia and Vietnam. It has active development programmes in Bangladesh, Cambodia, China, East Timor, Eritrea, India, Kenya, Nepal, South Africa, Rwanda and a host of other countries including many of the islands of the South Pacific.

Fred Hollows received many awards in recognition of his tireless work to improve eye health worldwide. Among these are the Human Rights Medal, Humanist of the Year in 1991, an honorary doctorate from the University of Queensland, and the Rotary Award for World Understanding. The evening before his death he was presented with The Royal Australian College of Ophthalmologists Medal for his years of distinguished, meritorious and selfless service by fellow ophthalmologists.

There are many opportunities to support and volunteer to help the Fred Hollows Foundation. For more information on Fred Hollows, the Fred Hollows Foundation and their programmes to restore sight their website address is www.hollows.org

6 Snippets

The Blind Chef

Jon, who has partial sight, has recently graduated from culinary school. He has launched his own mailing list called ‘The Blind Chef’ where he offers information on cooking skills and about the latest adaptive products. He has a database of frequently asked questions, tips, recipes and instructions for an entire menu each month. To subscribe to the mailing list send a message to: TheBlindChef-subscribe@yahoogroups.com

Be sure to reply to the confirmation email to complete the subscription process.

Recognising a Stroke

Sometimes symptoms of a stroke are difficult to identify. Doctors say bystanders can recognize a stroke by asking 3 simple questions:

1. Ask the individual to SMILE

2. Ask them to RAISE BOTH ARMS

3. Ask the person to SPEAK A SIMPLE SENTENCE

If they have trouble with any of these tasks call an ambulance immediately. Widespread use of this test could result in prompt diagnosis, treatment and prevent brain damage.

Quotes: ‘Happiness is good health and a bad memory’- Ingrid Bergman

Believers become achievers

7 Research

Intravitreal Avastin

(Bezacizumab)

By Dr Rachel Barnes

There has been a lot in the press recently about a new treatment for wet age related macular degeneration and other eye conditions involving the injection of Avastin (Bezacizumab) into the eye. Avastin was originally developed for use in colon cancer, and works by blocking the action of vascular endothelial growth factor (VEGF), a chemical messenger responsible for blood vessel growth and leakage. Blocking VEGF has been recognized for some time as potentially helpful in AMD and other conditions where abnormal vessel blood growth and leakage cause deterioration in vision.

However, Avastin is a large molecule and initial animal studies suggested that it would not penetrate to the level of the retina required for a therapeutic action in the eye. The company who developed it has therefore produced a smaller daughter molecule, Lucentis (Ranibizumab) for use in the eye. Clinical trials with Lucentis have been extremely encouraging, but it is not yet available commercially. In the meantime clinicians have been faced with many patients for whom the currently available treatments are unsuitable or ineffective. This dilemma led a few ophthalmologists in the United States to try injecting Avastin into the eyes of such patients. They have had very good results, at least in the short term, and following publication of their findings the treatment has rapidly gained in popularity.

There are some cautionary points that need to be made. Firstly, this drug was not initially developed to be used in this way and has not therefore undergone any formal research into its safety and effectiveness. For this reason, most doctors would not recommend it as a first-line treatment at this stage, but rather save it for use when conventional treatments have failed or are unsuitable. Secondly, we know that it has some unwanted effects when used in cancer patients as an intravenous medicine (injected into a patient’s bloodstream) such as increasing the risk of strokes and heart attacks. While this is very unlikely with the much smaller dose given into the eye, Avastin should be avoided in people with uncontrolled high blood pressure or recent history of a stroke or heart attack. Thirdly, this treatment has only been in use for the last few months, and it may have unforeseen late complications. Patients who may benefit from Avastin include those with active wet AMD, particularly those who can’t have photodynamic therapy, or for whom this has been ineffective. Patients with leakage from retinal blood vessels due to a blocked vein in the retina, or those with difficult to control diabetic eye disease may also benefit.

Key Genes for Sight Defect Found

Research has suggested that nearly three quarters of the cases of AMD are linked to just two genes. A team lead by New York’s Columbia University have published their work in the journal Nature Genetics, and hope their work will help aid in the development of new treatments.

Previous work had shown that several variants of a gene called Factor H significantly increased the risk of AMD. Factor H controls production of a protein that helps shut down the body’s immune response to infection once it has been successfully fought off. People with inherited variations of Factor H are less able to control inflammation caused by infectious triggers, which may spark AMD in later life.

The latest research focused not only on Factor H but on other genes that play a role in the same immune response pathway. A genetic analysis of 1300 people quickly identified a second gene, Factor B, as playing a significant role. While Factor H is an inhibitor of the immune response, Factor B is an activator.

Because of the complimentary role of these two genes, a protective Factor B variation can protect against AMD, even if one carries a risk increasing variant of Factor H, and vice versa. The researchers found 74% of the people with AMD had either the Factor H or Factor B risk factor, or both-but no protective variants of either gene. Lead researcher Dr Rando Allikmets believes these findings are significant because they confirm the role of these two genes and the central role of a specific immune response pathway in the development of AMD. The researchers are now looking for the specific triggers that set off the immune response and subsequent inflammation.

Lay Report to the S.A. & G.J. Ombler Charitable Trust

Summer Studentship Scholarship to Thomas Cheong

Title: Biochemical consequences of light exposure in RP rat models

Department of Optometry and Vision Science, University of Auckland

Supervisors: Professor Michael Kalloniatis and Dr Monica Acosta

Recent studies in animal models or retinal degeneration have shown that light exposure accelerates the rate of photoreceptor degeneration. The light exposure can be in the form of clinical photography. Given the significance of these findings, we wanted to evaluate the underlying mechanisms of photoreceptor degeneration in a transgenic model of retinitis pigmentosa: the Pro-23-His rat. This rat model has the human rhodopsin mutation and shows a progressive degeneration of photoreceptors.

We exposed control and Pro-23-His rats to continuous light for 24 hours and subsequently investigated retinal function in two ways. First we determined biochemical assays of key compounds associated with retinal metabolism. We have previously shown that certain compounds (enzymes) are sensitive markers of altered metabolic activity. In this way we can evaluate the metabolic characteristics of the retina and infer if the retina is under metabolic stress. Second, we conducted a study using an ‘ion channel probe-agmatine’ that we have previously shown to be an early indicator of cellular dysfunction. Photoreceptor cells label with agmatine before they die, and therefore identify cells that will eventually die. We found that metabolic activity is altered at the end of the 24 hour light exposure and that there is a significant increase in the number of photoreceptors labeled with the ‘ion channel probe’ in both control and the Pro-23-His rat model. The effect is greater in the animal model of retinitis pigmentosa. The anatomical and other markers are found a week or so after the light exposure. What this means is that in the animal model of retinal degeneration, photoreceptor cells are showing altered metabolic changes and poor control of ion channels before other changes are evident (eg anatomical). Although these findings confirm the damaging effects of light in normal retinas and in retinas of animal models of retinitis pigmentosa, they also provide evidence of the underlying mechanisms, i.e. altered metabolic demand. This finding will allow us to develop strategies to modify the effects of light by targeting metabolic pathways.

We greatly appreciate the S.A. & G.J. Ombler Trust in supporting Thomas Cheong during his summer studentship working within the Retinal Networks Laboratory of the Department of Optometry.

Michael Kalloniatis, Monica Acosta, Thomas Cheong.

Quote: We admire the Cheetah but we don’t suggest he try to improve his flying technique to be more like the falcon

8 Coping

Computer Hints

Screens

You may feel a larger screen is all you need, but the features you need to consider when choosing a computer screen include: the type of screen, its size, accessibility of controls, image quality, resolution, and the effect of the screen on eye fatigue. Test these features on a monitor before you purchase it.

If you are short of space or need to move your monitor frequently, you could consider an LCD (liquid crystal display), although they are more expensive and are not available in larger sizes. They also appear to fade when looked at from an angle. They do reduce reflective glare, and help reduce the effects of eye fatigue. The actual viewing distance is smaller than the size of screen you purchase, most modern computers are supplied with a 17 inch monitor. If you use large print consider purchasing a 21 inch screen.

Some monitors have anti-reflection and anti-glare controls built in to their contrast and brightness settings. New flatter and squarer screens are easier on the eye and have less reflection. Resolution refers to the maximum number of pixels the monitor can display, and when the resolution increases the writing on the screen becomes smaller. The smaller the pixels the easier the screen will be on the eye. Remember that the best way to relieve eye fatigue is to take regular breaks.

Enlarging Fonts

To enlarge the font size on your emails if you use Outlook Express click on tools, then options, and compose. Click on the top of 2 buttons which say font settings and you can enlarge the font size to one which will suit you. You can also change the type of font and size for individual emails on the tool bar just above where you begin writing an email.

To enlarge the size of the text when reading web pages using internet explorer click on view at the top of the screen, then click on text size, and click largest.

Accessibility Wizard

Click on start, then all programmes, then accessories, then accessibility wizard. Using the next button to move to each section click the mouse or use the arrow keys to make your selections. Click on the blind or having difficulty seeing section and the accessibility wizard will move you through a variety of settings which will enable you to see your computer more easily. You can change icon size, colour, cursor type and size. You can use the back button to reverse your changes if you require.

9 Creating an Accessible Environment

Making a public or private environment comfortable and functional for individuals who are blind or visually impaired should be a part of universal design. This is particularly important to consider when designing new homes, senior centres and retirement communities.

Lighting

In recreation and reading areas provide floor lamps and table lamps. People who are visually impaired should aim the light at the work they are doing, not their eyes. Place mirrors so light does not reflect off them and create glare. For window coverings use adjustable blinds, sheer curtains, or drapes that allow for the adjustment of natural light. Keep a chair near a window for reading and doing handcrafts in natural light.

Furniture

Arrange furniture in small groupings so people can converse easily. Make sure there is adequate lighting near the furniture. When purchasing new furniture select upholstery with texture when possible. Texture provides tactile clues for identification. Use brightly coloured accessories such as vases and lamps to make furniture easier to locate. Avoid upholstery and floor covering with patterns. Stripes and checks can create confusion for people who are visually impaired.

Elimination of Hazards

Replace worn carpeting and floor covering. Tape down or remove large rugs. Remove electrical cords from internal pathways or tape down for safety. Use non-skid non-glare products to clean and polish floors. Keep desk and table chairs pushed in. Move large pieces of furniture out of the main traffic areas. Resite telephones that are in main traffic areas. Keep cabinet, cupboard and room doors fully open or fully closed-not half open. Windows should be either open or shut, not just pulled to.

Use of Colour Contrast

Place light objects against a dark background, for example a dark table near a white wall, or a black light switch plate on a white wall. Install doorknobs that contrast in colour with doors for easy location. Paint the woodwork of the door frame a contrasting colour to make the door easier to locate. Mark the edges of all steps and ramps with paint, tape or velcro of a highly contrasting colour.

Hallways and Stairways

In hallways make sure that lighting is uniform throughout. Keep one wall free of furniture so people can trail that wall without encountering obstacles. Light stairways clearly, and make sure railings extend beyond the bottom and top steps. Mark landings in a highly contrasting colour with paint, tape or velcro.

This information was sourced from the American Foundation for the Blind at www.afb.org

10 www.tiresias.org

The Tiresias website is an information resource for people who work in the field of disabilities, and anyone with an interest in disability, particularly visual impairment. It evolved from work done by Dr Janet Silver of Moorfields Hospital and Dr John Gill of the Royal National Institute of the Blind.

Current information listed online includes lists of devices and types of equipment available from a wide range of international companies, ongoing research and development, agencies serving the blind and vision impaired, and guidelines on accessibility. A search engine allows you to search for a specific word or exact phrases.

Over 1600 devices for the use of blind and vision impaired people are listed under headings such as daily living, educational, low vision and orientation and mobility. Suppliers and the current cost of the device are included. There is a list of devices specifically for the deafblind.

The technology section lists up to date information and communication technology available for purchase such as magnification tools and screen readers. Entries have picture links or illustrations of the device.

Tiresias provides recent non-medical research into assistive technology for the blind and vision impaired. Subjects covered range from access to information and inclusive design to spatial awareness and visual displays. Over 100 scientific and technological reports on a wide range of topics from smart cards to interactive digital television can be accessed on the website as well as a variety of other journals and publications.

11 Snippet

Recently I stood at a bus stop only to have 3 buses I could have caught drive past. Two which did stop were going to the wrong suburb. Finally a bus with a driver I knew stopped and he rang the office to tell them I had been left behind. Wait here I was told. 20 minutes later another bus arrived, one that had seen better days, sent especially to take me home! Chocolat and I felt like royalty, but unfortunately the driver did not know the bus route, so I had to direct him and was able to be dropped off outside my own home!!

12 People

Fraser Alexander

Why would a blind person want to run 42 kilometers, and why would someone want to be on the other end of the guiding rope? Having been diagnosed with a degenerative eye condition called Choroideremia in my teens, I played rugby and cricket until my sight loss meant I had to pursue a sport requiring less visual acuity. Running a marathon had been a goal of mine after friends suggested the hills of the Rotorua marathon would be too tough for me to endure. In 1988 I set about proving every one of them wrong. My time of 4.07 and the decrepit state of my body at the finish line saw my idea of running just one marathon go out the window as I decided I could go under 4 hours without stopping. The more running I did the stronger I felt both physically and mentally.

Since 1999 I have required a sighted guide to compete. It was through the networks of the RNZFB that I was introduced to sighted running guides. These vital volunteers use a tether of varying length to ensure my position on the road is safe, and they give me the information I need on the terrain, speed or refreshment stops. This was a very exciting new lease of life as I didn’t want to give up the sport I loved but had realized that my sight was insufficient to independently complete a marathon course safely. Running on a rope can bring some interesting reactions to being labeled as a cheat, to can I have a go next. Among the plethora of comments a memorable few are: are you two tying the knot, how did he rope you into doing something as stupid as a marathon, getting the hang of it yet, who’s the puller and who’s the tugger then.

The Achilles Track Club of New Zealand is an organization catering for all people with physical and sensory disabilities who wish to compete in mainstream endurance events. They have been my inspiration and source of volunteers for 7 years now and their support both on and off the road has been simply wonderful. I have been guided by many selfless and inspiring people from firemen to air traffic controllers, from world champion athletes to first time marathoners, spanning in age from 14 to 72.

People close to me have told me I am addicted to distance running. I have completed several marathons including London, New York and the Gold Coast. Running marathons led me to the realization that a sight loss is no barrier to pursuing one’s dreams. In the years leading up to my significant sight loss a number of aspirations I had seemed doomed to end in frustration. I wanted to study marketing, advertising and commercial law. I wondered about the difficulties of listening to hours of recorded lecture tapes, finding and dealing with volunteer note takers, and the whole process of sitting oral rather than written exams. What I really required was none of these things, I required the right attitude to seek and grasp the opportunity. Therefore in more recent times my spare time has been consumed pursuing a post-graduate degree.

When the RNZFB introduced me to blindness technology and transcription services I not only realized I would have access to study materials, but that the access was almost completely independent and as efficient as fellow sighted students. I discovered a world where I could read my handouts in lectures, participate fully in class exercises, where I could give oral presentations, and I had the necessary resources and technologies to complete assignments in an identical manner to my sighted peers. This opportunity the RNZFB created for me was an incredibly liberating feeling; accessing the internet, using academic databases, downloading pdf files of scholarly journal full text articles, and participating in on-line seminars were all every day requirements of a Master of Business student, and I was there doing it. Of course there are the interesting and amusing moments such as when a lecturer is pointing to words on the board to answer or ask questions saying ‘this one’, and when a lecturer prints off an email and in handing you the hard copy says ‘now there you go, you can scan this now and voila, you will have an electronic copy’. You turn to them and say ‘what was it 30 seconds ago then!’. Sometimes we expect more from the university intelligentsia, and wonder whether MBA stands for mind boggling arrogand or major bullshit artist.

In one amusing incident we were asked to critique the oral presentations of our colleagues. After submitting our assessments the lecturer quizzed me for giving a student 8.5 out of 10 when the rest of the class gave around 4. The student concerned was not looking at the screen as he flicked through his powerpoint slides, each screen was talking about the notes he had just read out. It was totally confusing to the sighted students but sounded perfect to me!

Fraser is the Auckland Branch Chairman and International Delegate of Retina NZ

Lynn Keogh

Lynn, Chairman of the Otago/Southland Branch, recently won a gold medal in the 20km recreational bike race at the Masters Games. Riding a tandem bike with a pilot, Lynn says her fitness has increased tremendously since getting her guide dog Namo.