Remembering the Other Diseases Being Left Behind

Earlier this month we reported on preliminary findings from a EURODIS survey from more than 5,000 rare disease patients and family members that found nine out of 10 had experiences interruptions in the care they receive because of the COVID-19 pandemic.

Now, a new report gives some sense of how broad the impacts have been on rare disease patients in Ireland. It found that the COVID-19 pandemic is hindering access to routine treatment and care and having a detrimental effect on their health and well-being of the estimated 300,000 people living with rare diseases in Ireland. Rare Diseases Ireland, which issued the report, is calling on the government to ensure that in the effort to address the COVID-19 pandemic, rare disease patients aren’t left behind.

“Since COVID-19 arrived in Ireland, we have witnessed huge restrictions on hospitals for everything except COVID-19 and emergency care,” said Vicky McGrath, CEO of Rare Diseases Ireland. “The fact that rare disease care is routinely provided by hospital-based consultants within the hospital setting, has had particularly negative consequences for the care of rare disease patients during this pandemic.

Rare Diseases Ireland surveyed 176 rare disease patients (58 percent), family members (27 percent), and caregivers (15 percent) over the age of 18 found that nearly three quarters of respondents (73 percent) are concerned that their condition, or that of their loved ones, may deteriorate due to the impact of COVID-19 on their treatment and care. The survey was conducted between April 22 and May 6.

More than half (53 percent) have had scheduled medical appointments cancelled, while a quarter (26 percent) indicated that they have encountered difficulty accessing medicines and medical supplies.

Many patients reported that they put off seeking care for their rare conditions for fear of exposing themselves to infection. Three in ten (31 percent) respondents reported that they avoided seeking care for complications related to their condition because of concerns over exposure to COVID-19 and confusion over the availability of the usual hospital consultant to provide care.

But while the EURODIS survey brought home the broad extents of the disruption COVID-19 had on obtaining care for people with rare conditions, the feelings of anxiety rare patients and their families feel is what comes across most clearly in the Rare Disease Ireland survey.

Three quarters (73 percent) of respondents indicated that they were concerned about their own, or their loved ones’ rare disease. They are concerned about how their health is deteriorating without access to the usual healthcare, and how an already complex disease may be negatively impacted if infected with COVID-19.

“It’s a black hole with no light,” wrote one respondent.

“Condition has deteriorated – once a skill isn’t used consistently, it’s forgotten, and can’t be retaught,” wrote another respondent.

“I am scared,” wrote a third. “If they have too many persons in intensive care would they make the decision not to treat me due to me having several comorbidities. As my condition is so rare most staff in hospitals do not know how to treat me.”

Some two-thirds (62 percent) of the survey participants reported that they believe that COVID-19 is having a negative impact on their mental health.

Rare Diseases Ireland’s McGrath said many rare disease community members feel as if they have been left to fend for themselves and they are struggling to best manage. She said the government needs to consider the full range of people’s medical needs during this pandemic, including those with rare diseases.

“Many people with rare conditions spend years pursuing a diagnosis in the hope of therapeutic relief, so it is particularly frustrating when we hear of empty hospital beds and under-utilized resources,” she said. “In our collective efforts to combat one disease, COVID-19, it is important that other diseases are not left behind.”