Results from a recent EURORDIS COVID-19 survey show that the pandemic heavily impacted our rare disease populations. More than two months later, confinement measures are slowly being lifted in many countries. As the virus still circulates and as measures are constantly changing, EURORDIS believe that it is crucial that COVID- 19 post-confinement responses and policies in every country, region or locality prioritise the specific needs of vulnerable populations, including people living with a rare disease.
EURORDIS say ‘The risk for an exacerbation of pre-existing inequalities is very real and will translate into worse health outcomes for all, not just the most vulnerable. It is crucial to act now to limit collateral damage.
To this end, we have consulted our member organisations, conducted a survey with 8,500 respondents to measure the impact of the COVID-19 crisis on the care of people and have now put together a list of specific measures (below) that need to be taken to protect people living with a rare disease during the post-confinement period.’
Specific measures to help our rare disease community
EURORDIS is now calling upon policy makers to advocate for and implement the below measures to protect members of the rare disease community:
• Close monitoring of the spread of the SARS-CoV-2 virus, while paying attention to the spread of the disease in high-risk populations including people living with a rare disease.
• When a vaccine or other prophylactic treatment becomes available, rare disease patients should have priority access, if their health condition allows for such vaccination.
• Schools, educational facilities and resource centres should be prioritised when relaxing confinement measures, as they are essential for both people living with a rare disease and their family and carers. Schools should be supported to ensure that they have the necessary flexibility to assess individual situations and adapt adequate measures for children with rare diseases.
• Guaranteed access to testing and PPE (personal protective equipment) for people who need it most, including prioritised serological testing for people living with a rare disease.
• Governments should actively take measures to protect the most vulnerable in the population, and not only leave measures to the discretion of service providers, employers, etc. Clear and realistic guidelines are needed that prioritise access to healthcare, social care, opening of schools and educational facilities and resource centres as confinement measures are being lifted. Where possible, working from home should be encouraged, but with the understanding that some carers have children that need constant care. When the nature of a job does not allow for home working, adjustments to the workplace should be made to prevent people putting themselves and their families at risk. These guidelines should be clearly communicated to the public.
• Clear guidelines on mobility (local, inter-regionally and internationally), while considering specific measures for people with increased needs.
• Continue providing online consultations when people are burdened to physically access healthcare facilities because of logistical/practical reasons or fear. Take the steps to integrate such telemedicine tools into routine care practice with the necessary clinical assurance and data protection safeguards.
• Lastly, we call upon all citizens to play their role in protecting the general population and the most vulnerable ones in particular by adhering to the guidelines and minimising the risk of infection.
Progress during the COVID-19 pandemic has been made possible by remarkable actions, efforts and dedication of all health/ social care professionals and all other citizens that continued to work in difficult and precarious situations. Remarkable solidarity has been expressed by families and the rare disease community at large. Policy makers at the EU, national and regional levels have played their role by swiftly implementing evidence-based policies. They must not drop the ball.
EURORDIS says ‘We must stand strong and build on this solidarity for the months to come.’ As a member charity of EURORDIS we fully support this initiative.
