Shining a Light on Rare and Retinal Diseases

Over the course of this pandemic, an extensive amount of research has been conducted to determine the impact of COVID-19 on society as a whole and to identify how certain societal groups and demographics have been differentially affected by the virus around the globe. With respect to the retina and rare disease communities, both of which represent people living with rare eye diseases, numerous studies have been carried out to highlight the disparities that exist in accessing appropriate care and treatment during this pandemic both on a national and international scale. This includes surveys from the Royal National Institute of the Blind, the American Academy of Ophthalmology and preliminary findings from the EURORDIS Rare Barometer Global COVID-19 survey to name but a few^1,2,3,.

Preliminary global findings from the EURORDIS Rare Disease study which had more than 5000 global respondents indicate that 9 in 10 people living with a rare disease have experienced interruptions to the care they receive for their condition, while 6 in 10 of those who declared an interruption to care due to COVID-19 also remarked that this is detrimental to their health or the health of the person they care for³.

These are very worrying outcomes which underline the immense difficulties that exist for people living with rare diseases in accessing timely, accurate and essential care, treatment and rehabilitation that is imperative to mitigate disease onset. The United Nations Secretary General, António Guterres said it best that “the virus does not discriminate, but its impacts do” and so it is our duty to draw attention to these inequities facing people living with rare diseases, such as rare eye diseases, and resolve them⁴.

In early July, Rare Diseases International (RDI) made a statement recognising the disproportionate impact that COVID-19 is having on the rare disease community. In its call to action, RDI highlighted the urgent need to “eliminate the risk of exacerbating pre-existing inequalities” and prevent people living with a rare disease from being “discriminated and becoming even more vulnerable in COVID-19 response and recovery strategies, as well as in long-term health system restructuring plans”.

Retina International supports this movement which will help to ensure that the 300 million people living with a rare disease are considered a high-priority, high-risk community, and who require new and more appropriate support infrastructures to facilitate the provision of more equitable treatment and care.

To achieve this, it is imperative that we increase public awareness around the unique and disproportionate challenges facing people living with rare diseases, some of which are considered “hidden” disabilities, such as rare eye diseases. To do this, the Royal National Institute of the Blind (RNIB) launched its own “World Upside Down” awareness campaign to inform the public about the challenge of social distancing for people living with sight loss, by encouraging people to share an upside down image on social media⁵.

Through this campaign and other efforts which help to raise awareness of these inequities among the general public, policy makers and patient advocates, we can begin to make progress in establishing health infrastructures and support services which will help with the provision of more accessible diagnostic, care and treatment resources.

References:

1. RNIB, One in five people with sight loss rationed food during lockdown as loss of independence begins to impact says RNIB. Available at https://www.rnib.org.uk/about-us/media-centre/latest-media-releases/one-in-five-people-with-sight-loss-rationed-food-during-lockdown. Accessed July 2020.
2. EyeWire News. AAO Surveys Reveal Severe Effect COVID-19 Is Having on Ophthalmology Practices. Available at https://eyewire.news/articles/american-academy-of-ophthalmology-releases-covid-19-survey/?utm_campaign=Enewsletters&utm_source=hs_email&utm_medium=email&utm_content=87392443&_hsenc=p2ANqtz—RFG8XTUhbbwHnGZzPCWyNPsucIfb4NGwBkz7Vvsj20axCeK5oOsBsdY2b54aknyNsMW3YgfK4-NXH2jyPJjooehL3aZrUXLxQ_FeI8j1busigvg&_hsmi=87392443. Accessed July 2020.
3. 9 in 10 people living with a rare disease experiencing interruption in care because of COVID-19. Available at http://download2.eurordis.org/documents/pdf/PressRelease_COVID19surveyresults.pdf. Accessed July 2020.
4. The United Nations. We are all in this Together: Human Rights and COVID-19 Response and Recovery. Available at https://www.un.org/en/un-coronavirus-communications-team/we-are-all-together-human-rights-and-covid-19-response-and. Accessed July 2020.
5. The Royal National Institute of the Blind. Social distancing with sight loss. Available at https://www.rnib.org.uk/campaigning/social-distancing?utm_source=facebook&utm_medium=organic-social&utm_campaign=world-upside-down. Accessed July 2020.