Genetic Alliance UK recommends vulnerable people affected by genetic, rare and undiagnosed conditions should be added to list
Media coverage of the pandemic has been relentless, a deluge of rapidly changing information leaving many of us bewildered and worried. Every person has experienced the frustrations of lock-down. Just about everyone seems to have felt pangs of loneliness, separated from friends, family and colleagues and unable at times to do the things we enjoy the most. Children have missed out on educational opportunities. Medical appointments have been cancelled or postponed. Many have experienced the relief of all-to-brief returns to near normality.
Shielders and self-isolators forgotten
With so many people affected, it’s all too easy to overlook the impact on people living with genetic, rare and undiagnosed conditions. All too easy for the many individuals and families affected by these conditions, who are amongst the most vulnerable to Covid-19 have yet to emerge from shielding or isolation to be forgotten. Too many children from our community are unable to return to school or access educational support. And carers continue to shoulder additional and massive responsibilities in order to keep themselves and their loved ones safe as the virus continues to circulate.
Impact on mental health
The covid-19 pandemic has been catastrophic for the mental and physical well-being of people living with genetic, rare and undiagnosed conditions. The clinical risk is serious, and when someone with a genetic, rare or undiagnosed condition has contracted Covid-19, the impact can be been grave. But it is fair to argue that the greatest problem lies in terms of the measures taken – the need to reduce risk through shielding or self-isolation, necessary interruptions to care and treatment, social care and education. There has been little or no respite for those that care for people with genetic, rare and undiagnosed conditions, especially for those for whom minimising the risk of infection is critical.
Recommendation for prioritisation
The long-haul is not nearly over and the burden on mental, as well as physical health and wellbeing, will continue to increase until members of the rare disease community and their families and carers have access to vaccination. These are the reasons why Genetic Alliance UK will be putting forward a recommendation that vulnerable members of the rare disease community, along with their families and carers, be amongst those prioritised for Covid-19 vaccination.
The Joint Committee on Vaccination, the body that advises the UK Government on immunisation, has updated advice on priority groups for Covid-19 vaccination. We know from the Prime Minister’s statement on this matter on 9 November 2020 that front-line carers and NHS staff will receive priority access. Those over 65 will be next in line, regardless of health state.
Genetic Alliance UK believes that those rendered most vulnerable as a result of their rare condition should also be viewed as equally important. Prioritising those affected by rare conditions and their families and carers would enable children and adults with rare conditions to access the care and support that they need and are entitled to.
Vaccination would enable vulnerable children to return to schools and carers and family members the freedom to return to a more normal lifestyle without exposing their loved-ones to unacceptable risks. Prioritising our community is a right and fair thing to do.
Do you think the genetic, rare and undiagnosed community should be prioritised for the Covid-19 vaccine? Get in touch, Covidfirstname.lastname@example.org.
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