Irish Patients will Lose Out on Major Sight Loss Breakthroughs if Government Does Not Act Now

Irish Patients will Lose Out on Major Sight Loss Breakthroughs if Government Does Not Act Now

– As major international conference on vision research takes place, Fighting Blindness calls for National Registry of Patients with Eye Disease –

– Conference hears from those at the vanguard of research and offers patients a rare opportunity to ask questions of world experts –

– Among speakers are inventor of “bionic eye”, and researchers using space imaging technology to image cells in the retina, and proteins from algae to restore vision –

– Number of people with sight loss expected to climb
from 224,000 to 272,000 by 2020 –

Date of issue: Friday, November 6 2015
Fighting Blindness, one of Ireland’s leading patient-led charities, has today called on the Government to support its National Patient Registry for Rare Inherited Retinal Diseases and to use it as a model to capture more common eye diseases by developing a National Registry of Patients with Eye Disease. The charity is highlighting the critical importance of a register to expedite the process of therapeutic development and ensure that patients have equitable and timely access to cutting-edge treatments and therapies as they emerge. The call was made at Retina 2015, a major international conference organised by Fighting Blindness and supported by Novartis featuring of some of the world’s leading experts on sight loss. The event is taking place in Croke Park, Dublin today, Friday November 6, and tomorrow, Saturday November 7.

Among the conference key speakers are:

  • Professor Eberhart Zrenner, Tübingen Center for Ophthalmology, Germany, the inventor of the subretinal implant or “bionic eye” which aims to give artificial vision back to blind patients
  • Dr Joseph Carroll, Medical College of Wisconsin (USA), who is using adaptive optics, originally developed for imaging deep into space, to image the retina and enable specific cells to be targeted with gene therapies. Dr Carroll’s father hails from New Ross, Co. Wexford
  • Professor John Flannery, University of California, Berkeley (USA), whose optogenetics research is focusing on using proteins from algae to restore sight
  • Dr Shannon Boye, University of Florida (USA), who is developing a gene therapy to treat the most common cause of blindness in children
  • Jason Smyth, the fastest paralympian on the planet, who has Stargardt disease, the juvenile form of macular degeneration
  • and Mr Aodhán Ó Ríordáin TD, Minister of State, Department of Justice & Equality.

With sight loss affecting some 224,000 people in Ireland currently and projected to rise to 272,000 by the year 2020, Fighting Blindness is prioritising the importance of vision research, having to date invested over €15 million across more than 70 research projects.

Avril Daly, Chief Executive, Fighting Blindness, is calling for joined-up thinking from Government so that people experiencing sight loss here will not be left behind when it comes to clinical trials or new approved therapies:


“This conference focuses on the stunning advances in retinal research that will not only slow progression or arrest sight loss, but have the potential to restore vision. However, to be able to benefit, those affected will need to know their precise diagnosis so that the specific problem can be repaired. Fighting Blindness has already put in a place a register for people with rare inherited eye conditions—Target 5,000—which identifies the genetic cause of a person’s condition, but we now need to go one step further. The Government needs to understand that the model of healthcare is changing and if patients in Ireland are to receive the most up-to-date treatments for unmet needs, registers for not only rare but common diseases too should be developed. Target 5,000 offers an excellent model and infrastructure on which to develop a National Registry of Patients with Eye Disease, including the more common conditions such as age-related macular degeneration, and we would urge the Government to build on its success. We call on the Minister for Health to make this a public health priority.”

Minister of State, Aodhán Ó Ríordáin TD, Department of Justice & Equality, officially opened the conference, underlining the importance of empowering patients:


“Retina 2015 provides a unique opportunity for clinicians and scientists on home soil to inform their own clinical and scientific practice by hearing first-hand from some of the most eminent researchers around the globe. It is also an opportunity for patients to be equal partners in learning from, and asking questions of, researchers on the latest innovations, therapies and treatments. My hope is that it will offer great hope and serve to inspire people about what the future potentially holds for them and for others who develop eye conditions.”

Jason Smyth, the fastest paralympian on the planet, fresh from his 100m T13 category gold medal victory in the Paralympic Athletics World Championships in Qatar is welcoming the opportunity for patients to ask questions of doctors and researchers:


“As someone living with Stargardt disease and 10 per cent vision, it really is a fantastic opportunity to be in the same room as some of the world’s leading experts and find out about the latest treatments and therapies. I want to echo the call of Fighting Blindness in asking that the Government put in place the structures now so that as soon as new therapies become available patients can access them. The Irish government has previously committed to the objectives of the World Health Organisation’s Vision 2020 which aims to eliminate avoidable blindness by 2020. So let’s play our collective part in making that vision a reality.”

Professor Eberhart Zrenner, Tübingen Center for Ophthalmology, Germany, the inventor of the subretinal implant or “bionic eye”, believes that we are at a key time for patients with a range of eye conditions:


“Many patients who have received electronic retinal implant technology have reported some restoration of vision and the ability to distinguish faces, identify mid-sized objects, including phones, and some of them even the ability to read letters. This is a pivotal time in vision research as new therapies—whether they be gene therapies, stem cell therapies, drug therapies, electrostimulation, retinal implants—become available to help patients maintain or regain some vision, making real what was once considered impossible. Never has there been a more exciting time in global vision research. People with sight loss can be very hopeful for the future.”

For David Keegan, Consultant Ophthalmic Surgeon at the Mater Misericordiae University Hospital in Dublin and Fighting Blindness board member, gene therapy is a “game changer”:


“So often we talk about research but now we can actually realistically talk about treatments for blindness. Gene therapy for the eye—where the defective disease-causing gene is replaced—is the game changer. By way of example, an eye gene therapy for a condition known as LCA (Leber congenital amaurosis), the most common type of childhood blindness, is already on course to become the first gene therapy approved by the US Food & Drug Administration for any condition. Of course, it is early days—this is one gene therapy for one specific eye condition—but it illustrates the enormous strides being made.”

Loretto Callaghan is the Managing Director of Novartis Ireland, which is supporting the organisation of the conference:


“At Novartis we believe that collaboration is key to successful patient treatments and outcomes. We are pleased to continue our support of this important meeting, which encourages global experts to share their pioneering research while connecting with each other and with people living with sight loss. Irish statistics show that one person with diabetes goes blind in Ireland each week, which is just one cause of preventable blindness that science, industry and patients can fight together and win.”

For more information on the conference, visit www.Retina.ie or follow on twitter @twitter.com/fightngblindnes #RetinaDublin

ENDS

Issued by:

Don Delaney, d2 communications, tel.: 087 7933249 / email don@d2communications.ie

About Fighting Blindness

Fighting Blindness is an Irish patient-led charity funding and enabling world-leading research into treatments and cures for blindness. It provides a professional counselling service to support people affected by sight loss. Through education and advocacy Fighting Blindness works to empower everyone in Ireland living with severe vision impairment. Fighting Blindness is involved with rare, genetic, age-related and degenerative conditions and represents the 224,000 adults and children in Ireland who are affected by severe vision impairment. Please call 01 6789 004 or visit www.FightingBlindness.ie for more information.