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access to oxygen therapy in canada: when does breathing become a human right?
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1 in 5 patients are unable to receive an oxygen therapy prescription when they needed it most according to a cpff report, access to oxygen therapy in canada.
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roughly 30,000 canadians are living with pulmonary fibrosis (pf), a disease that causes lung scarring so severe it can make the simple act of breathing a challenge. and many pulmonary fibrosis patients require supplemental oxygen to support their breathing.
combine those with the millions of other canadians with conditions that affect a person’s ability to breathe, including asthma and chronic obstructive pulmonary disease (copd), and you see a harsh picture of just how many people are left to rely on oxygen therapy to get through their day.
the problem is that oxygen therapy is nowhere near as accessible as it should be.
sharon lee, executive director of the canadian pulmonary fibrosis foundation (cpff), has seen firsthand how difficult it can be for patients with pulmonary fibrosis and other lung diseases to get the air they need. “oxygen should be a human right,” lee said.
unfortunately, the opposite is the reality for many people with these conditions and getting their oxygen can sometimes be like pulling teeth. “in our survey, 20 per cent of people who responded felt they didn’t get oxygen in a timely manner and were left in the lurch when they really needed it,” lee added.
the cost challenges of oxygen and what it means for patients
living in a country with “free healthcare” doesn’t always mean healthcare is free. regarding oxygen, it’s often difficult to get insurance companies on board with the patient’s needs. adults over 65 have their total oxygen costs covered for them through many provincial insurance coverage programs, but pulmonary fibrosis and other lung diseases don’t always wait until you’re 65 to come on in full swing.
for those that haven’t quite hit that milestone, out-of-pocket costs can drive a lack of affordability so dire it could mean the difference between life and death. in addition, patients must meet funding criteria set by each provincial regulator.
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“if you live in ontario and are 65 and over, the government covers everything. but for those 64 and younger, they will cover up to 75 per cent. the other 25 per cent is up to you,” lee said.
the only saving grace is insurance, which can cover the rest. but not everyone has access to insurance plans, nor do they have enough to cover what they need.
location also plays a massive role in oxygen affordability. in ontario, insurance guidelines and cost reimbursements are set up far better than elsewhere in the country. “if you live out east, there really is no coverage, so it has to come out of pocket unless you’re on social assistance,” lee said.
dr. kerri johannson, a pulmonary physician specializing in interstitial lung disease, also cites location as a significant factor regarding oxygen access. “oxygen access requires infrastructure. so, if you’re running off a generator, it’s going to be a problem. without reliable infrastructures, it takes a lot of energy to keep these things [oxygen devices] going. ideally, there would be an improvement in technology that would improve the oxygen delivery systems.”
where a person lives dramatically influences their ability to access oxygen and have it covered because of how the government allocates funds. provinces are given a certain amount of the healthcare budget based on population. if someone lives in a lower-populated area, they will have more difficulty finding the coverage they need than if they lived in a major city.
the cost challenges aren’t only in the patient’s hands. the amount of money it takes to deliver oxygen is also an oppressive factor when trying to get each patient with pulmonary fibrosis and other lung diseases their much-needed medicine.
“if you live in the gta [greater toronto area] and are prescribed oxygen, you will most likely have it by that same afternoon,” lee said of the delivery challenges faced by oxygen companies and patients. “if they [patients] run out of oxygen in the gta, they can pick up the phone and get added to the route. but in rural areas, they’ll say, ‘our delivery is only this day, so you’ll have to wait until next week, or you can go pick it up yourself.’ that’s the only option, and it’s really difficult to say everyone has equitable access.”
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oxygen is highly flammable. because of that, the delivery of the substance needs to be taken seriously and done correctly. without proper delivery, disaster could strike at any moment. the issue is that there are not enough appropriate delivery systems available to ensure that everyone – from those living in the gta to those in deep rural areas – gets their oxygen when they need it most.
in march of 2023, the liberal government made a billion-dollar pledge to fight rare diseases, such as pulmonary fibrosis. but, even with a seemingly large amount of money being put forth, not much change is expected in the way of equitable access to oxygen.
“the liberal government finally confirmed that one billion in funds will go to rare diseases in the country. that sounds like an awful lot of money, but with all the rare diseases, it’s a teeny tiny drop in the bucket,” lee said.
dr. johannson has had first-hand experience working with patients who need oxygen but don’t always get what they need. she recognizes that cost needs to factor into medical decisions and access to therapies within budgetary constraints but that there is room for improved decision-making. “we as clinicians should be able to prescribe oxygen, and it should be funded,” she said.
“i can only speak to alberta, but oxygen comes out of a device budget similar to a wheelchair. no one is trying to withhold oxygen, but it’s coming out of a specific budget,” dr. johannson said about the process of prescribing oxygen to patients. she suggests it might improve access if we considered it a pharmacotherapy and within a medication budget.
rethinking guidelines: how changes across the provinces can improve access to oxygen?
the guidelines in place for oxygen allowance are askew. each province has established their own policies and, in doing so, created a disconnect among healthcare professionals and their patients across the country. in fact, these guidelines, along with other challenges, have led to “1 in 5 patients being unable to receive an oxygen therapy prescription when they needed it most,” according to a cpff report, access to oxygen therapy in canada.
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the qualifying criteria, based on the oxygen saturation levels of each person with lung disease, differs across the provinces, making it even more challenging to have equitable access to oxygen nationwide. some people may have lower oxygen saturation levels in one province and not qualify for care, but those levels would be more than enough to get them a prescription elsewhere.
the inconsistent way each province determines oxygen needs is not cognizant of the reality that all patients with pulmonary fibrosis and other lung diseases should be given the same chance to receive oxygen therapy when they reach a specific threshold. while people with pulmonary fibrosis may need more oxygen than those with other disorders, specifically copd, the baseline needs to remain the same across the board for equitable access to improve.
“i’d like to see a national standard, so it doesn’t matter where you live. you’ll get the same treatment,” lee said.
when asked about what the government could do to improve guidelines and oxygen access, dr. johannson said, “listen to clinicians and patients that work in this area. we are the people who eat, sleep, and breathe these diseases. i think if they listened to experts in the area, patients, their caregivers, and expert clinicians, that would be the best way forward. i think a really important part of [improving] medical access is to participate in research. if there are opportunities to demonstrate an improved quality of life, this is a necessary intervention that continues to drive the field forward.”
“if [those making the policies] are not experts in this area, we need to recognize that a lot of these policies are there for historical reasons or because they were established when there was a lack of current evidence. the criteria are not based on any science of evidence at all,” she added.
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outdated medical equipment and oxygen access
equipment to access and use oxygen regularly can also come with a hefty price tag and a physical burden. heavy oxygen tanks and the need for a caregiver to control the level of oxygen being pumped out all play a role in how easy it can be to fall short.
“the equipment is heavy and clunky. it makes you housebound. they’re not portable or travel size, and it’s a struggle to travel because you’ll run out [of oxygen] somewhere, so where do you go to fill up?” lee said.
while many may look at the united states and see something to aspire to, lee doesn’t quite feel the same. the technology is better in the u.s., but the access is often dependent on money and not equitable for all.
“i always think they must have a better system, but they don’t. if you have money, you can get the best of everything, and in so many ways, canada is still ahead of the game because we do have some coverage, but it’s not adequate.”
one thing that the u.s. has that canada has yet to adopt is a remote control for ease of use. “when you’re sitting but have to get up, you’ll need more oxygen. the problem is that you usually have to get someone, like a caregiver, to turn it up or down. in the states, they have a universal remote to increase oxygen so you can get up yourself. canada is antiquated with the equipment,” lee said.
when asked about the oxygen devices and access, dr. johannson found that having something like a remote would be a game changer for people with pulmonary fibrosis and other lung diseases. “you [patient] have to walk over to the concentrator to turn it up. so, if you’re sitting down and need more oxygen to get up and walk around, you have to get up and walk across the room to turn it up to go to the bathroom safely. something like a bluetooth system, and adaptation to that kind of technology to facilitate adapting flow rates, that would be a game-changer for patients.”
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collaboration between oxygen providers and patients is the saving grace
tackling the issues faced by those needing oxygen can only be done at high levels. it isn’t enough to participate in the pucker up challenge, an initiative by cpff that challenges people to breathe through a straw to put yourself in the shoes of those who struggle to breathe daily. what needs to happen is collaboration among government leaders, healthcare providers, and oxygen providers across the country.
oxygen providers are especially vital to the overall operation, but as times have changed, so has their approach. lee notes a lack of collaboration between providers and their patients, which would be the first step in ensuring better service and equitable access.
“i would like to see more collaboration with oxygen providers so that if they don’t have a business unit up in muskoka, they could ask providers in muskoka to cover that fee,” lee said. “there used to be a lot of oxygen providers that were collaborative. they’ve been brought up and are now territorial. some are more flexible and try to go out of their way to help people. they made arrangements to deliver the oxygen, but very few will actually do that now.”
on a government level, treatment guidelines and accessibility need to be at the forefront of change. “we all need to work together — government, oxygen providers, and patients. we want equitable access. it doesn’t matter where you make these changes. the treatment guidelines need a broader definition. it should be the same standard across the country. why can’t someone get the same oxygen access in newfoundland or bc?” lee said.
when asked about the way forward, dr. johannson said, “it [guidelines] needs to be changed at a policy level. i’m increasingly surprised at how potentially adaptable policies can be in the face of good evidence and advocacy. we need to change these policies on a provincial level, one province at a time, unless we have a national strategy.”
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despite spreading awareness, conducting studies that put forth new evidence and education, and participating in events and challenges, more is needed. that said, there are plenty of things that people can do to help push the movement forward so that oxygen access in canada is improved and equitable for everyone who needs it.
“write to parliament and government officials to say that oxygen is a necessity. without it, we can’t survive,” lee said. “we support that everyone should have access to oxygen.”
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