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Breathing is something most people take for granted.

But for people with lung disease, it can be a constant worry, especially if they need a little help and have trouble accessing care.

While it is crucial, access to oxygen therapy for those suffering from lung disease can be difficult and costly in Canada. For example, one in five Canadians with the lung disease pulmonary fibrosis can’t access sufficient oxygen therapy to meet their needs, according to a new survey commissioned by the Canadian Pulmonary Fibrosis Foundation.

It’s a small survey – 561 patients, 79 caregivers, 107 health care professionals and 27 oxygen providers – but it graphically illustrates many of the problems that people living with chronic health conditions face, especially if they need specialized support, like oxygen therapy.

Most people are familiar with supplemental oxygen, at least superficially. In daily life, it’s not unusual to see someone with a little plastic tube in their nose, carrying a little tank on their shoulder or in a wheeled cart. Most people using O2 therapy have chronic obstructive pulmonary disease (COPD), an inflammatory lung disease that causes obstructed airflow from the lungs. There are two million COPD sufferers in Canada, a condition associated principally with smoking. A small percentage of COPD patients require supplemental oxygen.

But the treatment is also used by people with a wide range of conditions including cystic fibrosis, heart failure, lung cancer, COVID-19, and more. About 30,000 Canadians are affected by pulmonary fibrosis (PF), a condition in which the lungs become scarred, which is often caused by environmental exposures to asbestos, chemicals or mould, but is also a side effect of some drugs.

Medical-grade oxygen is considered a drug, so it requires a prescription. But while it’s classified as a drug, it is managed as a medical device, which complicates matters. Qualifying for oxygen therapy is difficult. Medical criteria are rigid and vary by condition. So, too, do the conditions for reimbursement. If that weren’t enough, policies vary widely by jurisdiction. Too often, accessing care is a postal-code lottery in Canada.

A healthy oxygen level (also called oxygen saturation) is 95 per cent or higher. Oxygen therapy can be helpful when oxygen levels drop below 88 per cent. But, in some provinces (including British Columbia, Alberta, Manitoba and Ontario), that level must drop below 80 per cent for patients to be eligible for supplemental oxygen.

Half of the health care providers surveyed by the CPF Foundation (respirologists, respiratory therapists and family physicians) said they are unable to prescribe oxygen therapy to patients who need it because of bureaucratic rules.

Part of the story here is that PF patients feel like second-class citizens compared to COPD patients. Guidelines for prescribing oxygen are based on the needs of COPD patients, who have access problems too. Generally speaking, PF patients require more oxygen than COPD patients, especially if they are active. In particular, they have trouble qualifying for exertional oxygen (additional supply for walking). Two provinces and three territories won’t approve it at all, and in the others, the criteria are strict.

Practically, existing policies mean patients have to ration their oxygen, and some are even left housebound because of limits on supply and limited access to equipment. For example, a patient with pulmonary fibrosis may qualify for only three small oxygen tanks a month – about six hours’ worth – so they would have to be careful about leaving the house.

Supplemental oxygen comes in many forms, including compressed oxygen and liquid oxygen, portable and stationary, as well as oxygen concentrators. A basic supply costs about $300 monthly, but concentrators cost $2,000 to $4,000.

For patients who qualify, the prescription is usually covered 100 per cent for those over 65, but coverage is 75 per cent for those under 65. This too varies by province. About one in eight of the patients surveyed said they had to pay out-of-pocket for medical oxygen, often thousands of dollars annually.

The policies regulating oxygen therapy shouldn’t be this irrational or complicated. It’s just one small example of the need for the health system to modernize and adapt to the realities of an aging population living with a multiplicity of chronic conditions, and the blurring of the lines between drugs and devices.

Trying to access essential care shouldn’t leave patients breathless and broke.

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