Rare Disease International Statement on COVID19 Response and Recovery
What this global pandemic has shown is that
“the virus does not discriminate, but its impacts do”
– Antonio Guterres, United Nations Secretary General
To ‘Build Back Better’, do not leave behind people living with a rare disease in COVID-19 response and recovery.
Rare Diseases International (RDI) wishes to bring to the urgent attention of policy makers and authorities the increased vulnerability that the 300 million people living with a rare disease (PLWRD) worldwide are facing during the COVID-19 pandemic. The impact and recommendations outlined in this statement can be extended to the undiagnosed population, a group within the rare disease community that is experiencing paralleled vulnerabilities, in addition to facing a diagnostic odyssey.
RDI commends the commitment and actions of health and social care professionals, as well as policy makers from all over the world during the crisis. In addition, RDI calls for continued and reinforced efforts to:
1. Eliminate the risk of exacerbating pre-existing inequalities; and
2. Protect 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.
The onset of the COVID-19 crisis has unveiled pre-existing health, social and economic inequalities that prevail between and also within countries of the world and has demonstrated the need to urgently address them. PLWRD are a vulnerable population that is disproportionately impacted considering the chronic, highly complex, progressive and severely disabling nature of their diseases, which generate specific care needs. As such, PLWRD need to be considered a high-priority high-risk population during COVID-19 response and recovery.
RDI welcomes the efforts led to protect people living with non-communicable diseases (NCDs)1 and people living with all kinds of disabilities during the COVID-19 pandemic, and wishes to highlight that PLWRD are often marginalised, underserved, and forgotten even within these populations. With this statement, RDI urges authorities, NCDs and disability advocates to acknowledge that PLWRD are an identifiable vulnerable population having specific needs and concerns linked to rarity and requiring a targeted approach during COVID-19 response and recovery.
Member States have acknowledged the need to protect populations with pre-existing conditions from COVID-19. In order to ‘build back better’ it is essential to remind them of their universal health coverage (UHC) commitments, which go beyond COVID-19 itself and include specific efforts to address rare diseases. Indeed, this reflects the UN Political Declaration on UHC and is in line with the guiding principle to ‘leave no one behind’ of the Sustainable Development Goals (SDGs) and earlier UN Resolutions, such as WHA63.17 on Birth Defects.
RDI and its members call upon the whole society to uphold the principles of solidarity, equity and cooperation in efforts to ‘build back better’.
All citizens must play their role in protecting the general population and the most vulnerable ones, in particular by adhering to the guidelines and minimizing the risk of infection.
It is also the time to invest in people and prioritize strong, well-funded, public health and welfare systems that also address the needs of the most vulnerable, and to coordinate and collaborate in public health policy across borders.
The rare disease community stands ready to co-create this brighter future.
Read the complete RDI Statement on COVID19 Response and Recovery
