Sara Rotenberg: We need equitable access to the covid-19 vaccine for disabled people

Disabled people have been significantly impacted by the covid-19 pandemic. Evidence from the UK suggests that 59% of all covid-19 deaths were disabled people, a death rate two to three times higher than the general population. [1] For people with intellectual disabilities in England, who already die, on average 20 years before their non-disabled peers, the covid-19 death rate was six times higher than the general population. [2-4] Many disabled people are at increased risk of contracting covid-19 because in-person care requirements, inaccessible public health messaging, lack of autonomy, and living in communal care settings can inhibit prevention and protection measures such as physical distancing and access to personal protective equipment (PPE). Some disabled people have underlying health conditions that make them more susceptible to adverse outcomes of covid-19. These are largely attributable and amplified by poor social determinants of health and barriers to accessing healthcare, such as limited accessible transit and facilities and discrimination. [5] 

Vaccines—the latest tool in our pandemic arsenal—provide unique promise for this population because all existing public health measures are unsustainable and inadequate. Despite evidence that supports prioritising disabled people across many existing ethical frameworks, there are few considerations to prioritize disabled people and their carers globally. To ensure inclusion for disabled people, there are two key elements governments need consider.

Firstly, equitable distribution policies need to consider the diversity of disabled people, impacts of the pandemic, and risks. Disabled people without specific biological basis (i.e. underlying condition) who are more impacted by the social impacts of the pandemic and/or have difficulty with the covid-19 prevention measures should be considered in early phases, or just ahead of the general population. Prioritization committees should recognize how the lack of accessible communication and support to help disabled people navigate this new terrain, as those who are already systemically disadvantaged in health and social care more widely have not been protected during the pandemic. [6] For example, it could include people with hearing and sensory impairments for whom masks present significant communication challenges. Using a framework that looks at risk (e.g. care needs, living situation) and impact of vaccine (facilitates safe return to regular activities, reduces risk) should result in a list that prioritizes disabled people, family careers, health workers, support workers, frontline workers, and older persons (65+) in vaccine distribution. 

Secondly, accessibility is likely the most critical component to include disabled people in vaccine distribution. In terms of physical accessibility of spaces and modality of delivery, in many high-income countries, many health facilities and pharmacies (that may be tapped to deliver vaccines because of their existing flu vaccination infrastructure) are technically physically accessible. Yet, intermittent barriers, narrow navigation paths, poor lighting and contrast, and inaccessible transport systems all pose barriers to disabled people. In low- and middle-income countries, where there are fewer accessible health facilities, governments should consider other venues that are more universally accessible, particularly for people in rural areas who may not have access to accessible transport. 

Globally, we have seen innovative strategies for testing, such as using parking lots and community centres. Identifying spaces that are physically accessible now, will make accessible distribution easier when the vaccine is widely available. For example, some public transportation stops are inaccessible, vaccination centres should only be held where curbs, walkways, and transport to the facility are universally accessible. For disabled people who have difficulty leaving their home due to accessibility requirements, with sensory needs, or in community care settings, governments should consider community health workers or other health providers who are trained to provide quality, disability-aware care can deploy vaccines to enhance access. In order to devise appropriate and acceptable strategies for vaccination, governments should also engage disabled people to identify optimal modalities for inclusion.  

Information on vaccine efficacy, safety, and distribution must be accessible. In the early stages of the pandemic, access to accessible information, such as sign language interpretation in press conferences, and simple language public health guidelines were lacking. Ensuring that any information on the vaccine and its distribution is communicated in easy-to-read, multiple, accessible formats. This not only helps disabled people, but also broadly supports uptake in the general community, as simple public health messages are often the most effective. 

The world has long overlooked equitable access to healthcare for disabled people, among other basic rights. The pandemic has exemplified our apathy towards the adverse health outcomes of this population, as we have waited to act, abstained from our collective duty to protect, and actively denied people appropriate care through the medical rationing.

Vaccines offer significant promise to protect this population from covid-19 in ways that other public health measures are have failed. There are concrete ways to operationalise equitable access for disabled people, but it will take concerted efforts and political will to recognize these inequities and act for greater justice.

Sara Rotenberg is a Rhodes Scholar and DPhil Student in the Nuffield Department of Primary Care Health Sciences at the University of Oxford. 

Acknowledgements: Thank you for Sara Ryan (University of Oxford), Christopher Hatton (Manchester Metropolitan University), and Jean Balchin (University of Oxford) for their generous feedback and editing.

Competing interests: I report no conflicts of interest.

Funding Declaration: I receive funding for my studies from a Rhodes Scholarship.  

References:

  1. Office for National Statistics. Coronavirus (COVID-19) related deaths by disability status, England and Wales: 2 March to 14 July 2020 [Internet]. 2020 [cited 2020 Nov 15]. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/2marchto14july2020
  2. Heslop P, Byrne V, Calkin R, Gielnik K, Huxor A. Establishing a national mortality review programme for people with intellectual disabilities: The experience in England. 
  3. Allen BC, Burnett A, Daly P, Farr A, Hanford D, Hazell P, et al. Fourth Annual Report of the English Learning Disabilities Mortality Review (LeDeR) programme [Internet]. 2019. Available from: http://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR_2019_annual_report_FINAL2.pdf
  4. Public Health England. People with learning disabilities had higher death rate from COVID-19 – GOV.UK [Internet]. 2020 [cited 2020 Nov 16]. Available from: https://www.gov.uk/government/news/people-with-learning-disabilities-had-higher-death-rate-from-covid-19
  5. Sabatello M, Landes SD, McDonald KE. People With Disabilities in COVID-19: Fixing Our Priorities. Am J Bioeth [Internet]. 2020;20(7):187–90. Available from: https://www.tandfonline.com/action/journalInformation?journalCode=uajb20
  6. Courtenay K, Perera B. COVID-19 and people with intellectual disability: impacts of a pandemic.