COVID-19 Webinar 1: A Unified Voice for the Ageing Community

Introduction

On September 3rd, 17:00 CET, Retina International hosted a multi-disciplinary panel exploring the impact of COVID-19 on the ageing patient community.

Joining us on the panel was Dr. Keith Gordon (Canada) of the Canadian Council of the Blind, Dr. Heather Snyder (USA) from the Alzheimer’s Association, Karen Denton (South Africa) from Retina South Africa, and Donna Walsh (Ireland) from the European Federation of Neurological Associations.

The full webinar (58 minutes) can be viewed here:

A pdf of the webinar slides can be viewed by clicking here: COVID-19 Webinar 1 Slides PDF

Dr. Keith Gordon, PhD. Canadian Council of the Blind (2.20)

Dr. Keith Gordon opened the panel discussing the impact of the COVID-19 pandemic on Canadians who are blind, deaf-blind, and partially-sighted. Highlighted during his talk was the additional burden felt by those with visual impairments upon the introduction of social distancing measures in activities such as accessing information, healthcare, groceries, and support networks . Outlined in this webinar are the vulnerabilities in state healthcare that have been exposed by COVID-19, felt particularly by those with low-vision. Keith comprehensively discusses the pressing need for future considerations to be made surrounding issues such as loneliness, continuity of care, and website accessibility.

 

Dr. Heather Snyder, PhD. Alzheimer’s Association (15.20)

Next, Dr. Heather Snyder from the Alzheimer’s Association took to the floor illustrating the inextricable link between retinal and neurological health, with the eye acting as a window to our brain. Increasing research demonstrates that changes detected in the eye are potentially indicative of changes to the brain that can happen in Alzheimer’s or Parkinson’s disease, be it the build up of certain proteins, inflammation, or changes to the blood vessels. Highlighted is that exploring this link as a potential marker of neurological disease will facilitate earlier detection and intervention from clinicians. Heather discusses how Alzheimer’s patients and their carers have expressed anxiety during pandemic restrictions, citing vulnerabilities around age, underlying conditions, and access to respite care. She also continues to outline not only the challenges posed to the research community by COVID-19 but also the opportunities, stating that although clinical trials and lab research may be stymied on account of social distancing measures, there are also newfound opportunities for opening the door to global participation by virtue of conferences and events being moved online.

 

Karen Denton, Retina South Africa (25.25)

Karen Denton took to the airwaves with an engaging presentation outlining the stark chasm in healthcare access in South Africa, where extreme wealth and extreme poverty live side by side. She explained how 84% of the SA population were dependent on a state healthcare system not fit for purpose, and the burden was ever increasing as the wealth divide worsened during COVID-19 lockdown measures. During lockdown, Karen described how Retina South Africa had taken the initiative to call their patient members and discovered a trend common to that outlined by both Keith and Heather in their respective countries – patients were experiencing increased loneliness, anxiety, and isolation. Unique to South Africa, the country executed a complete alcohol ban during lockdown. This had disastrous repercussions when individuals began drinking hand-sanitiser, and it began affecting the optic nerve and subsequently their vision. Akin to the Alzheimer’s community, Karen describes that despite the challenges of COVID-19, there are also positives; increased online events and working from home has improved accessibility for those with low vision and removed the stressful barrier of commuting!

 

 Donna Walsh, European Federation of Neurological Associations (EFNA) (33.45)

Donna Walsh concludes the panel with a presentation describing the broader neurological picture for patients during COVID-19. She echoes the sentiments of her fellow panelists describing that the struggle for her patient community was not lack of access to medicines, but lack of access to supports such as pain rehabilitation and counselling, demonstrating the universality of the patient experience during pandemic times. She reiterates the broader impacts of lockdown measures on patients and research alike, spanning from poor mental health, to slow progression of research development. Similarly, COVID-19 has provided the opportunity for us as patients, advocates, clinicians, and researchers to reevaluate the status quo and create innovative solutions to these obstacles through a fast-tracked digital transformation, and the prioritisation of patient supports and public health.

 

We thank each of our panelists for their contribution and discourse, and also to Novartis for supporting this event.

 

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