Canadians With A Rare Disease Are At A Disadvantage When It Comes To Healthcare

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Many countries are starting to recognize that people with rare diseases face significant challenges accessing health care. Pulmonary fibrosis (PF) patients in Canada, experience the same reality. Diagnosis is lagging and access to treatment varies across the country, in part, due to lack of awareness and understanding of this disease.

Rare diseases are defined as serious, chronic conditions that are debilitating or life-threatening. Tuesday, February 28 is Rare Disease Day. Though just another day on the calendar for some, for the more than 3 million Canadians suffering from a rare disease, and specifically, the 30,000 Canadians affected by PF, today is an incredibly important day. For people living with PF, it’s a day to speak up and spread awareness about this terrible disease, a day that can be a harbinger for hopeful things to come.

PF is an incurable, fatal lung disease that kills more than 2,500 Canadians each year, but remains a little-known disease, despite having survival rates lower than many cancers. “If you say the word cancer or diabetes to someone, there’s instant awareness and recognition, but if you say pulmonary fibrosis, people usually give you a blank stare, and we want to change that,” says Sharon Lee, Executive Director at Canadian Pulmonary Fibrosis Foundation (CPFF).

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. Oxygen therapy can help make breathing less challenging, but according to CPFF’s 2022 Patient and Caregiver Survey Report, 20% of patients aren’t getting access to an oxygen therapy prescription when needed. For some patients, medication and physiotherapy can slow the progress of the disease but the only long-term treatment is a lung transplant.

Early diagnosis is key

PF is not top of mind for most family practitioners. Many patients wait two or more years for a confirmed diagnosis. It’s important to increase awareness so we lessen the time between a patient experiencing their first symptoms, and getting a final diagnosis. “The sooner we can get a clear diagnosis, the sooner treatments can start, and the sooner we can help patients at a less severe stage of the disease,” says Todd Georgieff, pharmacist and CPFF board member.

CPFF is working hard to raise awareness and funds for PF. Particularly so people living with this disease can get more equitable access to diagnosis, treatment, and support.

For other notable highlights from the 2022 CPFF Patient and Caregiver Survey, please click here to view the report highlights.

Rare Disease Campaign

Tuesday, February 28 is Global Rare Disease Day. Throughout the month of March, CPFF will be holding online activities to help mark this important month including:

Pucker Up Challenge – People across the country are taking the CPFF Pucker Up Challenge to experience what it feels like to work hard for every breath. Canadians are invited to take the Pucker Up Challenge and help spread the word.

Send an E-card to a Rare Individual – Canadians are invited to pay tribute to a rare individual by making a donation to send a tribute or memorial card.

Explore patient and family stories – Despite challenges, people living with PF show amazing determination and courage. Explore patient and family stories.


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