EURORDIS, the voice of rare patients in Europe, has written an open letter to politicians containing some recommendations to follow in order to protect those suffering from a rare disease (over 300 million people worldwide) during the COVID-19 pandemic .
“To leave no one behind in this pandemic”, especially those who are among the most vulnerable.
We publish some of the most significant extracts below.
EURORDIS-Rare Diseases Europe praises the actions, efforts and dedication of all health and social care professionals, as well policy makers at EU, national and regional level, who are facing difficult decisions and exhaustion on the frontline of this COVID-19 pandemic. We know that no policy maker or public health authority wishes to leave anyone behind during this pandemic. However, the 30 million people in Europe and 300 million worldwide living with a rare disease are among the most vulnerable populations during this crisis.
We would therefore like to bring to their urgent attention the concerns and needs of people living with a rare disease, their families and carers during the current crisis.
Through this open letter, we implore policy makers and authorities in Europe and the world to take action to protect people with a rare disease from becoming even more vulnerable during this crisis, in line with the recommendations set out below.
Rare, often chronic, highly complex, progressive and severely disabling diseases generate specific care needs . The effect of COVID-19 on health and social systems is immense and has a direct impact on the care that people suffering from a rare disease receive during this stressful period, as well as on their socio-economic condition, education and employment.
Eurordis then illustrates how COVID-19 affects the lives of people with a rare disease and makes recommendations, for each of the areas it analyzes, on how politicians should act to support these people who are, in fact, among the most vulnerable.
This is a time for upholding the guiding principles of solidarity, equity and cooperation. It is a time to see through the promise to ‘leave no one behind’ and achieve universal health coverage for all.
The crisis proves the importance of strong, well-funded, public health and welfare systems that address in particular the needs of the most vulnerable and also demonstrates the added value of coordination in public health policy and collaboration across borders within the EU and beyond.
ACCESS TO HEALTHCARE
The surge of patients seeking medical attention due to COVID-19 is stretching the capacity of healthcare systems in terms of human resources, medical equipment […] and hospital beds. This is causing a number of issues for people living with a rare disease […] who are seeing their regular access to medical advice restricted and their continuity of care disrupted […] Certain medical and surgical interventions labelled as ‘elective’ or ‘non-essential’ are being cancelled or postponed […] Since rare diseases can be highly debilitating and life-threatening, waiting for medical intervention can result in a severe deterioration of symptoms […] .
People living with a rare disease are facing issues in exercising their right to cross-border health care provided under relevant EU legislation due to travel restrictions […] Accessing specialised health care or treatment in another EU country is especially important [… ] because certain treatments being only available in some hospitals across the EU.
EURORDIS is extremely concerned by reports stating that, in some countries, medical guidelines issued for the COVID-19 pandemic are discriminating against people with disabilities and/or living with a rare disease on the basis of concepts such as ‘value of the person to society’..
When ill with COVID-19 themselves, people living with a rare disease may face barriers in receiving health care in the hospital setting as there are no protocols set in place for their care. This is due, in part, to the limited knowledge and scattered expertise on rare diseases.. […] may be in fear of visiting hospitals because of the risk of catching COVID-19 […] as a result consequently may put themselves at higher risk by staying at home. People living with a rare disease are not sufficiently considered among the target vulnerable populations for diagnostic testing for COVID-19 (PCR) […] .
What policy makers can do:
Safeguard the continuity of care and access to medical consultation […] This will also avoid the need to resort to triage..
Encourage and facilitate practices like virtual consultations (telemedicine) or the administration of certain therapies in the home setting […] Ensure the adoption of concrete measures/ protocols warranted by the complex needs of rare disease patients in the provision of emergency healthcare during the COVID-19 crisis. […]
Include people living with a rare disease, adults and children, as a priority population in preventative measures (testing, access to PPE, etc.) to stop the spread of COVID-19 […]
SCREENING AND DIAGNOSIS OF RARE DISEASES
Screening techniques such as medical imaging and laboratory tests can lead to the diagnosis of a rare disease. Not performing them in a timely fashion can be harmful.
What policy makers can do:
Guarantee a minimum support service and personal assistance service for vulnerable populations […] Take measures to promote the prioritisation of PPE for professionals working in social services. […] Develop clear guidelines for social care providers to use during the crisis.
Ensure that the funding of social services across Europe, including independent living services and resource centres for rare diseases, is guaranteed as a matter of urgency. […]
Ensure that national and regional authorities tap at the resources made available by the European Coronavirus Response Investment Initiative Plus (CRII+) to fund social care and support providers for persons with disabilities to ensure continuity of care and support in this time of crisis;
DAILY LIFE AND WORKING CONDITION
People living with a rare disease often face difficulties balancing work life and organisation of care […] These problems multiply in difficult times such as the COVID-19 crisis.
What politicians can do:
Put in place measures for the protection of all workers, with particular priority for those in vulnerable situations such as people living with a rare disease. […] Ensure that people living with a rare disease can work from home, and, if this is not possible due to the nature of the job or any other reason, ensure a special leave .
SAFE USE OF MEDICINES
A number of medicines which have indications for other diseases (such as lupus and rheumatoid arthritis) are currently being tested to verify their efficacy against COVID-19. However, the intake of these medicines in combination with others, or outside of the prescription’s indication can put the patient’s life at risk.
What politicians can do:
Make sure that national health authorities are monitoring and putting in place the right measures, guidelines or/and protocols during the COVID-19 pandemic in order to ensure appropriate distribution, delivery and safe use of medicines.
DEVELOPMENT AND ACCESS TO MEDICINES
The manufacturing of and access to medicines is being impacted during the COVID-19 crisis. On the one hand, there is increased worldwide demand for all medicines used to treat COVID-19 […] On the other hand, there is also a race towards the development of new or repurposed treatments and a vaccine for COVID-19. All these elements can have an impact on the lives of people living with a rare disease.
What politicians can do:
Put in place measures to guarantee the manufacturing and distribution of medicinal products and avoid supply issues. […] Ensure the use of channels other than orphan drug regulations to accelerate the availability of treatments for COVID-19, and facilitate global collaboration on research.
[…] provide support to hospital pharmacists for compounding products that can be prepared in hospital pharmacies under high quality requirements, […]. Ensure fair and equitable access to investigational and/or authorised products to treat COVID-19 and ensure fair access to compassionate use programmes […]
RESEARCH ON RARE DISEASES
EUROEURORDIS, as a member of both organisations, supports the communications on COVID-19 released by the European Patients Forum (EPF) and the European Disability Forum (EDF), and aims with this open letter to highlight the specific challenges and needs of the particularly vulnerable community of people living with a rare disease.