KAWARTHA LAKES-Jeannie Tom of North York, Ontario describes her journey with pulmonary fibrosis (PF) as an incredibly long and difficult one. Diagnosed in 2011, despite her positive outlook she says each day is challenging. Tom plans each of her days out in great and meticulous detail to work around this terrible disease. When she is home, she is tethered to a 50-foot tube that is connected to a stationary oxygen concentrator. Stories like Tom’s become all the more heartbreaking especially when you consider that some PF patients can’t even access enough oxygen to breathe each day.
“Breathing should never be hard work, but for Jeannie, and for all those living with PF, breathing is a precious and highly precarious endeavour,” says Kirk Morrison, CPFF Board Chair. “The sheer act of breathing for people with pulmonary fibrosis, something we all take for granted, is incredibly hard work.”
For the more than 30,000 Canadians living with pulmonary fibrosis (PF), an incurable and fatal lung disease, each day presents a new challenge according to CPFF. The Canadian Pulmonary Fibrosis Foundation (CPFF) recently released a snapshot of its 2022 Patient and Caregiver Survey results. The survey highlights the many challenges that pulmonary fibrosis (PF) patients continue to face, but most notably, that oxygen is unacceptably scarce for PF patients – 20% of patients did not get an oxygen therapy prescription when they needed it. One-third have no backup oxygen in case of a power outage and 75% of patients did not get oxygen on the day it was prescribed.
Oxygen supplies have been low throughout the pandemic. Some patients at an east-end Toronto hospital had to be transferred elsewhere last April due to low oxygen supplies.
“Early this morning, Michael Garron Hospital identified potential risks to its oxygen supply due to the high volume of COVID-19 patients requiring oxygen at the hospital,” Â Mark Fam, Michael Garron’s vice president of programs said in a statement at the time.
It’s unclear what is causing the situation at this time.
Since the last survey was released in 2020, conditions for those affected with PF have gotten worse. Patients are still facing many significant barriers to receiving effective treatment, specifically in the areas of diagnosis and access to treatments – one in three patients with PF wait up to three years for their diagnosis.
“Our 2022 Patient and Caregiver Survey results highlight the need for change and action,” says Sharon Lee, Executive Director of the Canadian Pulmonary Fibrosis Foundation. “These results are disheartening, but we need to keep fighting for change, and with increased awareness and continued investment, we believe we can help lessen the countless burdens this terrible disease has on people across this country.”
The disease kills more than 2,500 Canadians each year, but remains a little-known disease, despite having survival rates lower than many cancers. This chronic and debilitating condition causes irreversible scarring (fibrosis) of the lungs and reduces oxygen flow to the body. As the disease progresses, the scarring typically worsens, making it more challenging to breathe. For some patients, medication and physiotherapy can slow the progress of the disease, but the only long-term treatment is a lung transplant.
