EURORDIS survey on the effects of the coronavirus outbreak on the rare disease community
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An EURORDIS multi-country survey has pointed out the effects of the current coronavirus pandemic on people with rare diseases. EURORDIS acknowledges that the survey on how the Covid-19 is affecting people living with a rare disease “shows the detrimental impact of coronavirus” on this vulnerable group of patients. Rare diseases patients were called on to answer the survey between 18 and 28 April 2020.
In a press release, EURORDIS highlights that 9 in 10 people living with a rare disease faced care interruption following the Covid-19 outbreak, and that, for 6 in 10, this interruption is detrimental to their health. People with rare diseases are facing challenges, in terms of cancelled surgeries or transplant interventions (half of those interventions were cancelled), or because of cancelled or postponed appointments for rehabilitation therapies, such as speech and physical therapies. Appointments with the general practitioners or with specialists were as well cancelled in 7 out of 10 cases.
Also, within hospitals, rare diseases patients are difficulty accessing follow-up care: 3 out of 10 of them have had their hospital unit closed since the Covid-19 outbreak, as hospitals do not have the same capacity to deliver necessary care. The other medical services that are not fully accessible for people living with a rare disease during the coronavirus pandemic are hormonal treatment, chemotherapy, medical therapy at home or at the hospital, and diagnosis tests (blood or cardiac tests and medical imaging), with only 6 out of 10 of them that still have access to the mentioned medical services. EURORDIS reported that about 3 out of 10 cases where rare diseases patients were asked not to go to the hospital for another reason than suspicion of a Covid-19 infection. Preliminary figures presented from the survey also showed that 3 in 10 respondents declared that interruption of medical care due to the coronavirus, had definitely (10%), or probably (22%), a life-threatening impact on their health.
On a positive note, during this coronavirus pandemic, in 2 of 10 cases, for the first time, rare disease patients benefited from online consultations, and are thankful for this new experience, although some already benefited from online consultations. In the same vein, throughout Europe, there are cases of people living with a rare disease that are grateful for the quality of care provided by their healthcare professionals, regardless of the current conditions.
For the Social Research Director at EURORDIS, the coronavirus epidemic has had an impact on the quality of life of the 30 million people living with a rare disease in Europe, as well as for all rare disease patients in the world, and has worsened a situation for a group of patients that had already a difficult day-to-day living. EURORDIS “called policy makers and public officials to make efforts whenever it is possible”, especially in the post-confinement period, for more protection of people living with a rare disease.
