EURORDIS, the European Rare Diseases organisation, has issued a statement explaining the measures needed to protect patients of rare diseases as their countries lift lockdowns related to COVID-19.
The EURORDIS press release focusses on the health inequalities experienced by those with rare diseases, and the need to account for their pre-existing conditions when setting new policies. EURORDIS said:
“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, EURORDIS has consulted its member organisations, conducted a survey with 8,500 respondents to measure the impact of the COVID-19 crisis on the care of people and now put together the below list of specific measures that need to be taken to protect people living with a rare disease during the post-confinement period.”
The proposed measured include:
- 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
- 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
- Clear guidelines on mobility (local, inter-regionally and internationally), while considering specific measures for people with increased needs
Read the full list of proposals here.