Pandemic Challenges Shake Europeans with Rare Diseases

Conducted by EURORDIS, the study outlines how the pandemic has made life more difficult for many seriously ill people. Even though rare diseases by definition affect fewer than 1 person in 2,000, the diseases collectively impact the lives of 30 million in Europe.

The EURORDIS study reports that:

The pandemic disrupted care for 83% of rare disease patients. 

• Tests. Six in 10 patients could not access diagnostics such as blood tests and imaging.
• Therapies. Eight in 10 had interventions such as physiotherapy cancelled or postponed, and six in 10 couldn’t receive infusions.
• Surgeries. Six in 10 saw their surgical interventions cancelled.
• Appointments. Seven in 10 had medical appointments cancelled or postponed.

Access to care facilities was stymied.

• 47% of rare disease patients didn’t go to the hospital because they were afraid of catching the virus.
• 34% were told not to go the hospital if their health problem was not COVID-19.
• 25% found their normal care unit or hospital was closed because of the pandemic.

Because many of the diseases can be life-threatening, these gaps in care raise significant concerns about the health and outlook for European citizens with rare diseases.

The report also highlighted the mental health impact of COVID and related health care disruptions.  It found that:

Uncertainty and fear were common.

• Two-thirds of patients reported depression or feelings of being unable to overcome their problems during the pandemic.
• Six patients in 10 found pandemic-related interruptions in their care were detrimental to their health or the health of someone they cared for.
• Making matters worse, six in 10 had difficulty accessing the information they needed on COVID-19.

Telehealth helped bridge the gap for some patients.

• 98% of patients found email prescriptions useful.
• 90% used online educational tools to manage their rare disease themselves.
• 90% found online consultation or other forms of telemedicine helpful.

Although many rare diseases are largely unknown to the general public, some, such as multiple sclerosis, cystic fibrosis and hemophilia, are widely recognised conditions. About half of people diagnosed with a rare disease are children, and 90% of known rare diseases still lack treatment.

As health care systems work to address COVID-19, policymakers must take care that their responses not inadvertently disadvantage people with rare diseases, who already face so many challenges.