COVID-19 Disrupting Care for Nine of 10 People with Rare Condition

Since the beginning of the COVID-19 pandemic nine in 10 rare disease patients have experienced interruptions in the care they receive for their rare disease, according to a survey from EURODIS Rare Disease Europe.

Photo: Sandra Courbier, social research director at EURORDIS

The findings are preliminary results from the first multi-country survey on how COVID-19 is affecting people living with a rare disease. The survey included responses from more than 5,000 rare disease patients and their family members from all European Union countries, as well as unspecified other countries from April 18 to April 28. Respondents represent nearly 1,000 different rare diseases.

Six in 10 of those who said they had experienced an interruption in care because of the pandemic said it was detrimental to their health or the health of the person for whom they care. Three in 10 of those said those interruptions “could definitely” or “probably” be life-threatening.

As hospitals have curtailed services to focus on responding to the pandemic and minimizing the risk of infecting people, the suvey found that six in 10 rare disease patients said they did not have access to medical therapies at home or at the hospital anymore, such as infusions, chemotherapy, and hormonal treatment. More than half of rare disease patients who need surgery or a transplant saw their interventions cancelled or postponed.

Routine testing and visits have been impacted as well. More than six in 10 rare disease patients no longer have access to diagnosis tests, such as blood or cardiac tests, and medical imaging that are often crucial part of their daily care. Nearly seven in 10 had appointments cancelled with general practitioners or specialists who provide care for the rare disease. And eight in 10 have seen their appointments for rehabilitation therapies postponed or cancelled.

About half of those surveyed said that they have made use of some form of telemedicine since the start of the pandemic. Almost 9 in 10 of those who have experienced this type of consultation are happy with the experience and said that it has been very or fairly helpful.

“It is clear the COVID- 19 pandemic has a collateral impact on the health and quality of life of the 30 million people living with a rare disease in Europe, and indeed around the world,” said Sandra Courbier, social research director at EURORDIS, which has long collected data on the experience of rare disease patients’ difficulties in accessing care. “By creating new barriers, the current pandemic is worsening this already difficult situation. We are seeing cases where this triggers a strong feeling of anxiety among families.”

Author: Rare Daily Staff