People with retinal disorders among first groups to self-isolate during COVID-19

Islamabad : People living with retinal degenerations were amongst the first groups to self-isolate during the first wave of COVID-19. The inability to judge distance and to navigate in a safe way turned an already isolated group inward, and indoors.

According to a 2020 study conducted by Retina International, 62.96pc of the participants indicated that COVID-19 had had a negative impact on their lives, citing impacts on mental health, independence, and mobility. The 14.81 per cent of participants that reported COVID-19 as having a positive effect on their lives cited factors such as working from home, and not having to commute in dark or unsafe conditions.

The Pakistan Foundation Fighting Blindness (PFFB) shared these data on the occasion of World Retina Day, which it is observing today (Saturday), along with Retina International (RI)—an NGO which acts as the voice of 50 charities in 34 countries, funding research into rare genetic and age-related forms of sight loss.

The isolation experienced as a result of COVID-19 restrictions, and their impact on the inclusion and wellbeing of those living with retinal dystrophies, was further compounded by the implementation of virtual and digital technology “solutions” that did not address key accessibility requirements for the visually impaired.

As we move towards a world of digitised healthcare—which has been fast tracked as a result of COVID-19, urgent consideration must be given to the challenges of digital poverty, which impact the process of validating and standardizing home health monitoring and care, in particular for the ageing and visually impaired community.

The unprecedented pressure that COVID-19 put on health systems worldwide has resulted in delays in access to medical care. In the same RI study, 40 per cent of participants experienced a delay in follow-up appointments with their eye doctors, and 16.67 per cent reported a delay in treatment plan. This demonstrates an unacceptable lapse in care for retina patients, leading to needless vision loss.

The negative impacts of COVID-19 measures on research and innovation have also been well documented during this period. The halting of research during the initial lockdown in 2020 has impacted the progression of lab-based research significantly.

As such, RI is calling on governments to prioritise and protect the wellbeing and inclusion of those affected by retinal diseases. Governments need to urgently implement measures that enable the safe mobility and accessible inclusion of the vision impaired community in society and the workplace; improve awareness on the issues of digital poverty, and ensure that digital services are inclusive and accessible, with particular consideration for the ageing and vision impaired community; prioritise care and treatment for retinal dystrophies in times of crisis; preserve essential retinal research and development from disruption in times of crisis, and; promote the inclusion and wellbeing of the vision loss community.

In Pakistan, visually impaired person are facing greater challenges due to Covid-19, resulting in digital exclusion and increased risk of being left behind due to the absence of appropriate assistive equipment, and poor access to the Internet, accessible materials, and support.

In all its projects, PFFB altered its strategies through timely planning and shifting of services to online platforms. It achieved its targets to deliver project services related to awareness, education, capacity building, counselling, rehabilitation, eBooks development, and assistive technology support to the visually impaired.

“Community service is vital for the success of any organisation. Any person suffering from retinal diseases can visit PFFB (Office No. 3, 2nd Floor, Al-Babar Centre, F-8 Markaz, Islamabad), which is a self-help organisation requiring a constant stream of resources for sustenance and expansion. The affluent segment of the society, especially the corporate sector, can help by donating via cheques to the organization,” the PFFB press release informs, appealing for donations for continuation of its projects.