The impact of the pandemic on people living with rare diseases

  • Posted on 25.02.2021

The impact of the pandemic on people living with rare diseases


Sandra Courbier

Social Research Director - Rare Barometer Programme Lead


Almost 12 months after the WHO declared a global COVID-19 pandemic, people with rare diseases can reflect on a turbulent year – even if there are some positive lessons to be learned in how services are delivered.

While the pandemic continues, most reflections on the crisis come to a common conclusion: everyone suffered, but not equally. Vulnerable groups were hit hardest; inequalities were exposed and exacerbated.

As an advocate for people with rare diseases, I have seen first-hand how access to care was disrupted. This resulted in further delays to diagnosis and interruptions in treatment, as well as stalling progress on research and innovation.

The impact of this can be profound for patients, their families and wider society. When we talk about rare diseases, we mean disorders that affect less than one in 2000 people. However, while each of these conditions is relatively ‘rare’, is not uncommon to suffer from a rare disease. That is because there are more than 6,000 diseases that meet these criteria, affecting up to 30 million EU citizens.

Patients’ voices

To understand the impact of the pandemic on people living with rare diseases, we conducted a survey of 7,000 people in 36 countries during the first wave of the pandemic. The results confirmed our worst fears. They showed that 84% experienced disruption of care; 64% were concerned this would be detrimental to their health; and three in 10 worries this could be life-threatening.

We saw a significant impact on access to diagnostic tests and chemotherapies/infusions, as well as cancelled surgery. Psychiatric care was also interrupted at a time when respondents reported heightened anxiety and depression triggered by isolation. These issues returned, to varying degrees, during subsequent waves this winter. Some service providers have learned lessons from the first wave, while others still have a long way to go.

For me, the key is continuity of care. This can be safeguarded by adopting concrete protocols that make services safer or by investing in equipment and the healthcare workforce.

Digital tools

The other key area has been the exponential rise in virtual consultations. When people already know their health care team, remote care can help compensate care disruptions and improve overall access to care. Telemedicine has connected patients with support services and medical care without requiring them to travel. The administration of care in a home setting has further reduced the burden on patients while ensuring vital life-preserving therapies. The switch to e-learning also played a role in keeping patients safe and connected.

As we mark Rare Diseases Day 2021, it is crucial that we move away from the fire-fighting approach that characterised the first phase of the crisis. Let’s think hard about how we can build more sustainable and resilient healthcare systems that meet the needs of the most vulnerable patients in our communities.

Above all, we must learn the lessons of this crisis by using the tools we have to minimise risk, maximise quality of service and preserve continuity. After a torrid year, I hope we can look to the future enabled by technologies that serve patients – including those with rare diseases.

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