'Scary' times for the chronically ill and disabled as COVID-19 brings new fears about survival

Not long ago, something unusual started happening with 18-year-old Zach Jordan's blood pressure.

Normally, his mother Isabel would have rushed him to the hospital. But these aren't normal times and Zach has a rare disease that makes him particularly susceptible to the effects of any infection, including COVID-19.

"We delayed probably by a week … out of fear of going to the ER in terms of infection risk," said Isabel Jordan, the Squamish-based chair of the Rare Diseases Foundation.

Her son is doing fine now, but she still questions whether she made the right decision.

"One wonders if that fear kept us from finding out important information that we needed," Jordan said.

Earlier this week, provincial health officer Dr. Bonnie Henry said British Columbians should be assured that it is still safe to go to the hospital.

But for people with complex medical issues, any decision that requires breaking out of isolation is complicated.

Not only are they more susceptible to serious illness, but people like Jordan worry about the quality of care they'll receive if they contract COVID-19. And with many of the medical supports they depend on currently restricted, they wonder how many disabled people will see their condition worsen or even die as an incidental consequence of this pandemic.

"I think there are going to be wide-ranging impacts on people, on patients and on families," Jordan said.

'A lot of anxiety about health care'

For Jordan, the concerns aren't just about her son. She is disabled as well and has a chronic lung disease. Her 15-year-old daughter Evie has asthma. And they all have a history of pneumonia.

"It's scary for us in terms of what happens if any of us were to get it," she said. "We have a lot of anxiety about health care right now."

In Pitt Meadows, Klara Cramer is feeling similar anxiety about her two-year-old son, Tomas, who has a rare neurodevelopmental disorder called GRIN-1 that has left him severely disabled. He has frequent seizures and lung damage caused by using a feeding tube.

"Every cough is hard work and every chest infection is potentially life threatening," Cramer said.

Taking Tomas to the emergency room means driving all the way to Surrey Memorial Hospital, which has a specialized pediatric emergency department.

The cocktail of drugs that Tomas takes to manage his seizures is no longer working as well as it once did, but because of COVID-19, Cramer has resisted trying new medication out of fear it might cause new problems.

"Suddenly we are compromising his care and his quality of life because we have to eliminate the possibility of going to the hospital, unfortunately," she said.

For Jordan and her family, the current restrictions on provision of health care in B.C. are also taking a toll.

Jordan is unable to attend her regular hands-on physiotherapy appointments that help her deal with chronic pain, and an MRI she had scheduled for this week has been cancelled. On top of that, her lungs have been irritated by ash falling from a wildfire north of Squamish.

As B.C. considers loosening some of the tight restrictions that have been put in place, she'd like to see disabled people invited to the table to make sure their needs are considered.

"We can't treat one ... concern and ignore all the other ones. They don't go away because of COVID," she said.

'The worth of disabled people's lives'

Jordan also worries about what would happen if she or her son contracted the novel coronavirus and B.C.'s hospitals were overwhelmed with COVID-19 patients.

Ethical frameworks from around the world, including one created by the Canadian Medical Association, suggest that when resources like ventilators are scarce, first priority should be given to those most likely to survive and with the longest life expectancy.

These frameworks go so far as to argue it's justifiable to remove patients who are already on ventilators to free them up for higher priority patients.

Jordan wonders where that leaves her family.

"There's a huge societal bias around the worth of disabled people's lives," she said.

"I worry for my friends who already use ventilators and maybe because of their rare disease are probably only expected to live for another year or two. But they deserve that year or two — it's theirs to keep."

While the rest of society struggles with the limitations on daily life and anxiety caused by the COVID-19 pandemic, both Jordan and Cramer say the current reality isn't that different from normal life with a rare disease.

"We don't go on vacations because our comfort zone is literally 90 kilometres away from the hospital," Cramer said.

Jordan says she has a lot of sympathy for those who are having trouble adjusting to the uncertainty that COVID-19 has brought.

"We've been living with it in our family for a really long time, and everybody else got thrown into it in a finger snap," she said.

"Maybe there's something that the rare disease community, the disabled community can teach the rest of the world here. Listen to us."