![Save Sight Society NZ supporting research into retinal disease A/Prof Andrea Vincent]()
A/Prof Andrea Vincent
As part of its long-term commitment to research, the Save Sight Society distributes research grants to ophthalmologists, trainee ophthalmologists and university departments across New Zealand to support ground-breaking research into eye disease and improve eye care in the New Zealand population.
In 2009 my team at the University of Auckland reached a milestone when we received seed funding from the Save Sight Society New Zealand, The Ombler Trust and Retina New Zealand to establish the New Zealand Database for Inherited Retinal and Optic Nerve Disease. The database would enable us to characterise eye disease in individuals and their family members affected with genetic disorders, from a clinical perspective, and in determining the underlying genetic cause of retinal and optic nerve disorders. This was exciting because it would enhance our understanding of the relationship and spectrum of disease associated with given genes, both within families and between families – resulting in genetic diagnosis for some, improving the chances of being eligible for a clinical trial and, more importantly, for early intervention and treatment.
The database now has over 730 participants, and is a valuable resource which has allowed us to further investigate a group of retinal disorders. This includes the identification of a novel founder genetic mutation in the New Zealand Māori population, the PDE6B gene, causing autosomal recessive rod cone retinal dystrophy. The Genetic Eye Disease Investigation Unit is now characterising this mutation in a zebrafish model of disease, created using gene editing, which will be used to explore the potential for retinal rescue using drugs that act in the altered pathway due to abnormal PDE6B functioning.
Support from the Save Sight Society New Zealand has also enabled my team to carry out further work in the identification of novel genetic changes causing North Carolina macula dystrophy in non-Caucasian patients. This is a rare disease that has previously been linked to Caucasian patients, with a handful of causative genetic mechanisms described. Findings in this area will help our understanding of developmental macular disease. Another one of our projects has identified a novel genetic cause for autosomal recessive retinal disease, and this is being characterised in a zebrafish model.
All these projects have received funding from the Save Sight Society New Zealand.
With local knowledge of eye disease, genetic testing can be tailored to our population. Our work has highlighted that the unique ethnicities and disease present in New Zealand has the potential to contribute to the global understanding of inherited retinal disorders.
The National Trachoma and Eye Health Program symbol.
NAIDOC week offers an important opportunity to celebrate Aboriginal and Torres Strait Islander culture, resilience, and achievements. This year’s theme – “because of her – we can!” – celebrates the inspiring contributions Aboriginal and Torres Strait Islander women make to benefit of communities, and Australia as a whole.
THE NATIONAL TRACHOMA AND EYE HEALTH PROGRAM
One of the most celebrated health programs in Australia’s history is the National Trachoma and Eye Health Program, with the goal of eliminating trachoma in Aboriginal and Torres Strait Islander communities. The planning for the program started in 1974, and by 1976 the first teams started travelling throughout Australia. The main part of the program carried until the end of the decade. Today, the program is most associated with Fred Hollows, the pioneer ophthalmologist who played a key role in leading the Program. It is important to remember that Hollows didn’t go at it on his own.
The National Trachoma and Eye Health Program was born out of a collaboration between RANZCO in its previous iteration (known then as the Royal Australian College of Ophthalmologists), the National Aboriginal and Islander Health Organisation (NAIHO), and the Department of Health, together with local Aboriginal Community Controlled Health Services and other community-based organisations throughout Australia. The program included the creation of teams spreading across Australia, working methodically to screen, diagnose, and treat Aboriginal and Torres Strait Islander patients for trachoma and other eye conditions. The teams included ophthalmologists, nurses, orthoptists, optometrists, Aboriginal Health Workers, microbiologists, local community liaisons officers, as well as mechanics, cooks, drivers, and other volunteers who took care of many necessary aspects of such a complex operation. From 1976-1979, the teams screened over 100,000 people in 465 communities across Australia. Over 1,000 operations were carried during the course of the program, and over 27,000 people were treated for trachoma.
Outreach summary of the National Trachoma and Eye Health Program. Source: Royal Australian College of Ophthalmologists, 1980.
One of the biggest lessons of the National Trachoma and Eye Health Program is the importance of collaboration. The Program was such a success because of the commitment of all parties. The role on-the-ground of community liaison officers, Aboriginal Health Workers, and nurses was key to accessing communities and creating a safe environment for patients to be screened and treated by the visiting teams.
In 2008, five participants in the on-the-ground teams of the Program published a book, each writing an essay about their memories and point of view of the extraordinary program. The book, Beyond Sandy Blight: Five Aboriginal Experiences as Staff on the National Trachoma and Eye Health Program, was published by the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS), and is available online via the AIATSIS website here.
JILPIA NAPPALJARI JONES
Jilpia Jones, a Walmadjari woman and a pioneering nurse, was one of the first registered nurses to work at the Redfern Aboriginal Medical Service (AMS), starting during its first year of operation in 1971. The Redfern AMS was the first Aboriginal Community Controlled Health Service in Australia, a pioneering model of community owned service delivery which is now practiced by over 150 community controlled health services throughout Australia.
In the book, Jones recalls the confronting reality which awaited her team through missions and camps in remote Australia, confronted by racist attitudes of some of the mission staff and station managers, and the poor living conditions which contributed greatly to the spread of disease, including trachoma.
After detailing her experience with teams travelling through Queensland and different parts of Western Australia, Jones joined the team that travelled through the Kimberley. Jones writes about her team’s arrival into Fitzroy Crossing, where Jones had a unique and unexpected experience of meeting her birth mother. Jones was born in the area but forcibly removed from her family as a young child and was told her mother had died. But when arriving in Fitzroy Crossing and telling locals that this was her birth place, the community members realised who she was, and reunited her with her mother.
At the end of her chapter, Jones reflects on the National Trachoma and Eye Health Program:
“My time with the NTEHP was a very influential part of my life. Travelling throughout Australia with the NTEHP showed me that racism and discrimination directed against my people was more widespread than I had experienced before. I also learnt to become aware of occult racism often expressed as a kindly, if patronizing, attitude. The perpetrators of this attitude genuinely believed they were ‘being nice to the Blacks’. Certainly, this attitude was more likely to be encountered in the leafy suburbs of north shore Sydney than in the ‘big house’ in the home paddock 500 km outside Alice Springs. There, it was definitely ‘in your face’.
Fred Hollows taught me to believe in myself and to be equal among all people, even if you walked where others feared to tread.
The ophthalmologists who worked with the team taught me a lot and I like to think that we in turn taught them about us. It was encouraging how many were willing to learn from us, and that they respected our culture. This was reconciliation in action. Sometimes the numbers who flocked to see us and the distances we travelled reminded us of Alexander the Great and frequently we felt like his Macedonians in that we were following our leader to the ends of the earth.”
ROSE MURRAY
Rose Murrey, a Nyangumarta woman, worked as an organiser and receptionist in the same team as Jilpia Jones, which predominantly worked in the Kimberley region.
In her chapter of the book, Rose reflects on the role Aboriginal team members brought to the program teams:
“When I think back on what the Aboriginal team members brought to the NTEHP, it’s a combination of health knowledge, bush and mechanical skills, respect for other Aboriginal people’s ways, the ability to speak out when you have to, to finish what you start, and amazing senses of humour.”
Murray finishes with a reflection on the power of the program and its legacy:
“If we could harness that energy and vision that we had back in the trachoma days and had teams of skilled, hardworking people in each community, I would sleep much easier. I would know that my grandchildren and other children would have a healthier and safer life. I would know that access to appropriate and safe health education and medical treatment was happening to all.”
Reflecting back on this groundbreaking project now, 40 years on, we can see the lasting success of the Program by the dramatic reduction of the rates of trachoma, though the effort to completely eliminate trachoma continues today.
But perhaps the most important lesson has been the irreplaceable role of community leadership and involvement in all aspects of community health projects. The breakthrough work of Jiplia Jones, Rose Murray, and many other Aboriginal and Torres Strait Islander women and men has allowed the Program to achieve so much. It is our task to continue building these relationships as a cornerstone of improving health outcomes of Aboriginal and Torres Strait Islander Australians.
Because of her, we can!
Guy Gillor, RANZCO Policy Manager
References:
Jilpia Nappaljari Jones, Trevor Buzzacott, Gordon Briscoe, Rose Murray and Reg Murray (2008). Beyond Sandy Blight: Five Aboriginal experiences as staff on the National Trachoma and Eye Health Program. Available from the Australian Institute of Aboriginal and Torres Strait Islander Studies: https://aiatsis.gov.au/sites/default/files/products/report/jones-buzzacott-briscoe-murray-2008-beyond-sandy-blight_0.pdf
This week telehealth is being celebrated in Western Australia during the state’s Telehealth Awareness Week. The awareness week (25 – 29 June) aims to raise awareness about telehealth and encourage regional and rural patients to ask their specialists whether telehealth might be available for their next appointment.
For ophthalmology patients in Western Australian, telehealth services have been available since 2011 through the dedicated team of eye health professionals at Lions Outback Vision and local resident optometrists.
A/Prof Angus Turner, McCusker Director of Lions Outback Vision, says that the Western Australia eye health sector is leading the way in the use of telehealth in remote eye care which is a major benefit for patients in rural and remote areas.
“Telehealth allows more people to be seen closer to home. Optometrists provide eye examination and testing which enables the specialist assessment to occur remotely. The patient can be included in culturally appropriate settings via video consultations, which determines the best plan for treatment or surgery as required. Sometimes we are able to arrange treatments to be performed in our mobile clinic, the Lions Outback Vision Van with specialised equipment, further reducing the need for patients to travel vast distances to receive treatment.”
Of the 7392 patient consultations through Lions Outback Vision in 2017, 1555 were managed by telehealth.
To find out more about Lions Outback Vision, visit their website at https://www.outbackvision.com.au
World Glaucoma Week 2018 (11-17 March)
In celebration of World Glaucoma Week 2018, Glaucoma Australia hosted a Beat Invisible Glaucoma (B.I.G) breakfast on Monday 12 March to raise awareness about the devastating, sight stealing condition. Currently it is estimated that 300,000 Australians have glaucoma and at least 150,000 of those people are currently living completely unaware that in the future they may lose their vison if they do not receive treatment.
Glaucoma refers to a group of eye conditions that can cause irreversible damage to the optic nerve, usually because of increased pressure inside the eye. If glaucoma goes undiagnosed it can lead to complete loss of sight that otherwise could have been prevented with treatment. In the early stages of glaucoma there are no noticeable symptoms – this is why glaucoma is often referred to as the ‘silent thief of sight’. By the time vison starts to become blurred or cloudy around the edges it is usually too late to reverse the damage – although there could still be time to halt the progression of vision loss. This is why it is so important to have your eyes checked regularly even when you do not have any symptoms.
It is possible to get glaucoma at any age, however, glaucoma is more common later in life. About 1 in 10,000 babies are born with glaucoma. At age 40 about 1 in 200 people have glaucoma and at age 80 about 1 in 8 people have glaucoma. If you have a first degree relative with glaucoma there is up to a 50 percent chance that you have glaucoma too or will develop glaucoma in the future. For this reason, it is recommended that if you are 40 years or older with a family history of glaucoma, or over 50 with no family history, it is important that you schedule in regular eye checks with an eye care professional.
Facts about glaucoma
Dr Alina Zeldovich RANZCO Ophthalmologist and Annie Gibbins CEO of Glaucoma Australia at the Glaucoma Australia B.I.G Breakfast celebrating the launch of World Glaucoma Week 2018.
In celebration of International Women’s Day, we spoke with eight times Trainer of Excellence award recipient Associate Professor Anne Brooks to find out what drove her success in ophthalmology and teaching. A/Prof Brooks is Head of Clinic 3S, Clinical Lead AOS and an ophthalmologist to the Glaucoma Unit and Surgical Ophthalmology Service at the Royal Victorian Eye and Ear Hospital. A/Prof Brooks also runs a busy private practice in East Melbourne specialising in Glaucoma and Cataract.
What made you interested in becoming an ophthalmologist?
I became interested in becoming an ophthalmologist as it is a specialty which has both microsurgery and general medical treatment of eye diseases. That is fairly unusual in medical specialities, which are normally either focussed on medical treatment or surgery. With ophthalmology you are with the patient for their whole journey, hopefully right through to halting vision loss or even returning lost vision, which is very rewarding.
What has been the most rewarding aspect of your career?
I am very much involved in teaching ophthalmology, and I teach registrars in training, medical students, overseas trained medical graduates and GPs. I think this is the most rewarding aspect of my career as it allows me to help shape the next generation of ophthalmologists and eye care professionals.
What is the biggest challenge you have had to overcome to get where you are today?
The biggest challenge is work-life balance – I have a husband and two daughters. Ophthalmologists, as with all medical specialists, have heavy workloads, including clinics, surgeries and teaching. We also have to keep up to date with all the latest developments and keep our skills and knowledge current. Achieving the right balance of work, rest and family life is difficult, but essential.
What do you know now that you wish you had known starting out?
I wish that, when I started out, I had known that one can’t do everything.
What do you think needs to happen in order to press for progress in ophthalmology today?
To press for progress in ophthalmology today, I believe that ophthalmology needs a substantially greater public profile. Not enough people understand what ophthalmology is or what we do. If people knew more about ophthalmologists and eye health care, the more information they will have about eye diseases and the better they will understand what symptoms to look out for and when they need to see an ophthalmologist.
Dr Genevieve Oliver is an ophthalmologist and retinal surgeon, working at Flinders Medical Centre in Adelaide. Dr Oliver is also currently doing a PhD researching neglected and emerging retinal infections such as dengue, Ebola and toxoplasma
What made you interested in becoming an ophthalmologist?
When I was a kid, the only doctor I knew of was Fred Hollows, then a living Kiwi legend. I was inspired to do medicine, but it wasn’t until fourth year at med school that I fell for ophthalmology. I found myself in this insanely busy medical diabetic clinic in Auckland, and some nurse stuck me in the very dark clinic of an ophthalmologist who handed me an ophthalmoscope and put me to work. As I examined the retina, she described what I was seeing. That was my Epiphany. Since then, I have never looked away from ophthalmology or from the retina.
What has been the most rewarding aspect of your career?
It’s mundane, but I love discharging patients from clinic… it’s great when they no longer need my care! Having the opportunity to do research is deeply rewarding but also confirmed for me how much I enjoy clinical medicine and just how satisfying ophthalmology is.
What is the biggest challenge you have had to overcome to get where you are today?
It is a long, long road to becoming an ophthalmologist. I used to find it hard looking sideways at my friends who spent the best years of their lives not studying and not vitamin D deficient.
What do you know now that you wish you had known starting out?
I think life would have been easier if I’d had more self-belief when I was starting out. As a registrar, I had very encouraging and supportive consultants and mentors, but a pretty bad case of impostor syndrome. It was only when I was preparing for the RACE that I realized that if I had any hope of passing, I had to back myself. I wish I had seen Amy Cuddy’s TED talk back then: fake it ’til you become it!
What do you think needs to happen in order to press for progress in ophthalmology today?
As ophthalmologists, we are facing an ever-expanding workload and increasing demands on our time and resources. As a collective, we have a powerful voice to advocate for our patients in terms of funding, research and better health outcomes. Collaboration also inspires diversity, innovation and success.
Please tell us a little about yourself and the work you do?
I am an ophthalmologist in Sydney. I work in two public hospitals (Sydney Eye Hospital and Westmead Hospital), as well as in private practice. I am a big believer in access to eye care for all Australians, which is why I commit to working in the public hospital system. The hours are long, often unpaid, and the clinics are tough (my Wednesday morning Sydney Eye Hospital clinic, manned by several doctors, routinely has 80 – 90 patients), but without this service people would go blind. There is a lot of bad publicity out there about doctors, often portraying them as greedy, but anyone at the coalface knows that this is wrong. A lot of us work really hard in a chronically underfunded public system to ensure people don’t suffer unnecessarily. A lot of us do these hours while juggling young families and multiple other commitments.
What made you interested in becoming an ophthalmologist?
Ophthalmology is a brilliant mix of both physician and surgeon, something difficult to obtain in other medical specialties. Ophthalmologists have the ability to restore or maintain vision, something that keeps people independent and working. In addition to Australia and New Zealand, RANZCO takes a particular interest in the eye health of those in the Asia Pacific region. We have highly trained and experienced doctors that regularly give their time to help those less fortunate and unable to access any eye care in their own countries.
What has been the most rewarding aspect of your career?
Giving back. Whether it is in Australia or overseas, having the skill and expertise to restore vision is incredible rewarding. One of the first overseas trips I was involved in was in East Timor and we had 900 patients turn up on the first day (now that is a busy clinic!) It is incredible satisfying (and does give me a warm, fuzzy feeling) to be able to give people back their vision and independence.
What is the biggest challenge you have had to overcome to get where you are today?
For reasons I don’t fully understand, women often don’t get the same encouragement to succeed. Finding the confidence and belief in myself to know I can achieve was an important step, and I was lucky to be mentored by both men and women along the way who believed in me. As a junior doctor I was told by an eye registrar I did not have what it took to be an ophthalmologist, and that I would never get into the training program, but I did my part one entry exams and got in anyway (it was incredibly satisfying to subsequently see him in a café in Surry Hills and tell him so). As a junior registrar I was told that I couldn’t operate, and that I would never be as good as the male ophthalmologists (because I was a girl), but I went ahead and qualified anyway. I am now the Chair of the Annual Scientific Meeting for Australia and New Zealand, and sit on the RANZCO Board, all while raising a toddler.
What do you know now that you wish you had known starting out?
When you are training to be an ophthalmologist, you are surrounded by colleagues and supervised by consultants, so there is always someone around to help you through difficult situations. As a new ophthalmologist I felt rather isolated, though over time I came to discover a rich network of people whom I could ask for advice or help if the need arose. It’s just knowing where to look and who to ask. It would be useful to link young ophthalmologists into these networks earlier.
What do you think needs to happen in order to press for progress in ophthalmology today?
It needs to start with the right culture. In the last few years the College has worked hard to set standards that let people know unethical and unfair behaviour won’t be tolerated. The next step is to see it put into practice. I have been an ophthalmologist for ten years now, and I believe the vast majority of ophthalmologists are decent people who want to work in a fair system. It is not easy to challenge the status quo, but each and every one of us needs to take responsibility for what we see. I have heard from countless colleagues who have sat in a meeting, seen a significant injustice occur, and rave on about it afterwards, but never call it out at the time. We need people to speak up when they see something wrong, and take responsibility for being part of the solution, rather than waiting for someone else to sort it out, because who knows when that “someone else” will come.
This article will be published in the 2018 Autumn issue of RANZCO’s magazine Eye2Eye.
A potential scientific breakthrough holds the possibility of being able to restore some visual function in people blinded by glaucoma. Mice with similar optic nerve damage to that caused by glaucoma were able to regenerate nerves that conduct impulses from the eye to the brain that enable sight.
Two factors were involved in the breakthrough: gene therapy to get the nerves to regenerate and, most vitally, a channel-blocking drug cocktail to help the nerve transmit the impulses.
It has to be stressed that no human trials have been conducted and the results may not translate from mice to people. What is creating most optimism, though, is that gene therapy – which has been successful in sight-restoration previously – can only be done in a laboratory whereas drugs can be administered elsewhere. The researchers are hopeful that, eventually, drugs alone can be used to achieve similar results.
The technique of genetic modification carries the risk of causing cancer because it deletes or blocks tumour-suppression genes to stimulate nerve regeneration. The drug approach does not interfere with the tumour-suppression genes.
The breakthrough of this research was getting regenerated nerve fibres (axons) to not only form working connections with brain cells but to also carry impulses (action potentials) all the way from the eye to the brain. Previous experiments have achieved nerve regrowth but the fibres grew without the insulating sheath known as myelin which helps propagate nerve signals over comparatively long distances.
Earlier efforts were unable to achieve the necessary speed for nerve signals to reach the brain quickly enough to enable vision. But a review of medical literature revealed a potassium channel-blocker, 4-aminopyridine, that strengthens nerves signals when myelin is absent. This blocker is used to treat multiple sclerosis which also involves a loss of myelin.
The scientists – from Boston Children’s Hospital – believe suitable drugs can be identified to achieve further advances, even if they have to be teamed with visual training to facilitate recovery. Relief for glaucoma patients is not close but this new discovery does offer some hope.
Source: Boston Children’s Hospital
