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COVID-19 and Rare Disease Patients

Survey from the National Organization for Rare Disorders shows the impact on patients.

COVID-19 virus in microscopic detail

The impact of COVID-19 has rippled throughout the rare disease community, reducing access to face-to-face care and increasing emotional and financial challenges.

That’s the conclusion of a report by the National Organization for Rare Disorders (NORD). It’s the second time NORD has surveyed patients and families in the United States about the pandemic’s effect on their lives. The first survey was taken in April. The latest numbers, gathered in June, show that while more patients have access to telemedicine, more are experiencing canceled medical appointments and lost income.

Further, a number of patients and families reported they have held off or avoided care for fear on contracting the virus, with 28% of respondents canceling their own medical appointments. In all, 6% live in households where someone has been diagnosed with COVID or is suspected of having the disease.

One patient said that what once was a routine visit to the infusion center is now a frightening experience. Another family reported the death of a loved one who deferred care.

Here are additional data from the survey:

  • 32% have had challenges accessing medical care and treatment
  • 14% have had difficulties accessing medical supplies and devices, 68% of whom have had challenges accessing personal protective equipment (PPE)
  • 14% have experienced issues accessing medication for their rare disease;
  • 37% of households have been impacted by a loss of income  
  • 27% of households have experienced job loss; 9% of people who have lost jobs have also lost health insurance

Even with mask requirements in place, patients and families say they’re concerned about the risks of venturing out.

“I'm just generally concerned with the public's apparent lack of consideration of at-risk populations when choosing not to follow public health precautions. I wish more people were aware of the risk they transfer to the rare-disease population,” responded one patient.

Said another: “I have a number of health issues that need to be addressed but have put everything on hold because [I] don’t want to be in the hospital or have surgery (if they can do it) due to community-acquired illness in hospital.”

But patients said telemedicine is making a positive difference. Of the patients whose appointments were canceled, 85% were offered telemedicine as an alternative, compared to 65% in April. Many patients and families appreciated the safety and convenience.

Here is what they had to say:

  • “Typically, we have to travel over five hours (round trip) to see specialty doctors. Having a virtual appointment literally saved an entire day of travel with a two-year-old.” 
  • “I felt safe since I didn’t have to go into an office with sick patients.”
  • “It was timely, allowing me to get back to work taking minimal time off.”