Coronavirus: Ontario patients, caregivers highlight impact of pandemic on rare disease community

The last day of February is Rare Disease Day, meant to raise awareness for rare diseases and the impact on patients’ lives.

This year, amid the COVID-19 pandemic, there are calls for greater support for the rare disease community and improved access to treatment.

“These are people that fall through the cracks and fall through the cracks,” said Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders. “Collectively this is a huge, huge disease area and quite frankly it’s a public health issue.”

It is estimated one in twelve Canadians is living with a rare disease. These are conditions that range from serious to life-threatening.

Wong-Rieger pointed out the pandemic has taken a major toll on many of them, and their caregivers.

“We are astonished in terms of how many people living with rare diseases have been adversely affected by COVID, people who can not go in and get their regular kinds of treatments because the hospital is closed, the clinic is closed or they’re afraid to go,” she said.

Last April, the Canadian Organization for Rare Disorders surveyed hundreds of rare disease patients and their families. It found that three quarters of respondents said they felt they were at “great or very great” risk for COVID-19 complications.

The survey also found more than two-thirds were “somewhat to very” concerned about seeking healthcare because of fear of exposure to COVID-19.

It was a tough decision for Kristy Dickinson of Burlington, Ont., who lives with Ehlers–Danlos syndrome.

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“I take immunosuppressant drugs every week to manage one of my conditions … I really had to sit down with my family and weigh out the benefits and the risks associated with continuing on my treatment or navigating a virus where it’s constantly evolving or changing and that’s a really hard decision,” she said.

Dickinson said treatment decisions and access to care have been huge challenges for the rare disease community during the pandemic.

“Our healthcare system can be quite siloed and so oftentimes the burden falls on the patient or the caregiver to really manage or be the conduit of sharing info and I was honestly struggling to keep everything together,” she recalled.

Dickinson is the founder of an app called “Chronically Simple,” meant to help keep track of health records and now, amid the pandemic, potential symptoms of COVID-19.

On its website, “Chronically Simple” describes itself as a method to “track your medication, record how you feel, receive refill reminders and share information with your healthcare and support teams easily.”

Dickinson noted, “There are thousands of health and wellness apps out there but there wasn’t one that did everything.”

So she got to work.

The app is proving useful to Brenda Agnew, mother and primary caregiver for her 13-year-old son Maclain, who is living with severe Cerebral Palsy and acute hearing loss.

“We’re seeing a little bit more virtual care, we’re seeing appointments changed around … so for me it’s a great way to track what appointments we do have, what appointments have changed, who the care providers are,” she said.

Maclain depends on his family for care around the clock and during the pandemic, there is less support from outside caregivers.

“It’s a lot to not have that community you’re used to having to help you when you have someone relying on you 24-7 for care,” she said, adding, “It’s been difficult managing his anxieties and his fears and along with the isolation and just not having as much support as we would normally have.”

The first Rare Disease Day was marked on Feb. 29, 2008 because it is a rare date (leap year) that happens only once every four years. Since then, Rare Disease Day takes place on the last day of February.

Wong-Rieger said there is a long way to go to advocating for those in the rare disease community and ensuring they are taken care of and accessing the proper treatment whenever possible.

“We have got to get our system in place so that we can actually fund and cover off these patients as they need it … if we cannot take care of every single patient who could possibly be taken care of then we have not done it right.”