Advice to Policy Makers
Many of the people we spoke with offered advice to policy makers based on their experience of living with long COVID. The importance of acknowledging the condition, raising public awareness, and addressing issues related to employment, insurance, and the daily support needs of people living with long COVID, were prominent concerns.
Lack of acknowledgement of long COVID
There was a widely shared frustration, among participants, that policy makers did not give long COVID the same attention they gave acute COVID throughout the pandemic. As Nick put it, “There has to be more communication of long COVID by the policymakers, so that patients … are aware that there might be a chance that these symptoms linger on.” Tanya felt that, “Canada has barely even gotten to the point where they’re acknowledging that it’s a thing, and that, potentially, there’s tens of thousands of people affected by this.” Cathy remembers how “Every single day, every province, with their medical directors of health, would say how many people had COVID, how many people died … Never, ever has it been listed how many people have got long COVID.” Louise, made a similar observation when she commented, “Two percent die and you make a whole big hoo-ha about that. But the 10 to 15% of people who are still sick nine months later get zero acknowledgement.” Carrie 1 was “very disappointed in government and policymakers in general.” She felt that a focus on getting the economy and society back to normal meant they had made “a deliberate choice to not talk about long COVID.”
Participants were also concerned about long COVID being turned into a political issue. Cathy observed that there were still “a lot of deniers out there … certain political parties that have decided that it’s not real … I think they need to hear from people who are suffering from it, about how it has changed their lives.”
Tanya contrasts the intense public messaging around acute COVID with the relative silence around long COVID.
Transcript
All of these news briefs that they have given throughout the course of the pandemic, it was not acknowledged that even a mild COVID infection, or, in some cases, even asymptomatic COVID infection, could result in long-term, very debilitating, and very serious illness for many, many people. We repeatedly heard […]
Violaine feels that public health buried its head in the sand and that the lack of female decision makers is partly the reason.
Transcript
Bien jusqu’à présent c’est vraiment un scandale de santé publique, la façon dont le gouvernement ne s’occupe pas de nous, ne nous soigne pas, fait l’autruche. Je ne sais pas ce qu’ils ont pensé? Ils ont pensé quoi? Qu’on guérirait par nous-mêmes? Qu’ils auraient juste à ne pas trop s’occuper […]
Lack of estimates of the number of people affected
Several participants suggested that long COVID was being ignored because we don’t yet know how many people are affected. As Jason saw it, this is partly because “Governments focus on what can be measured and … there is now a grey area between having a condition that is very acute and having a chronic condition that … may or may not be officially diagnosed.” In addition, as Nicole reminded us, “We have a whole new patient population that don’t [even] have proof that they had COVID” because the government stopped testing programs when the numbers of people infected became too high. Both highlighted the financial implications of acknowledging a new population of chronically ill people. Jason pointed out that “These hard to measure chronic conditions are extremely costly to the country on so many levels,” while Nicole believed “The government doesn’t want to count us because they would have to provide disability benefits.”
Disappointment with relaxation of public health measures
A number of the people we spoke with said they were hurt and disappointed by the relaxation of public health measures such as the requirement to wear masks in public. This left them feeling abandoned and extremely vulnerable to re-infection. Carrie 1 felt that government policy makers “only care about the economy” and were willing to let people with long COVID be the “acceptable collateral damage.” Katherine worried about what would happen to her if she caught COVID again. She thought that “dropping the mask mandate was the stupidest thing they could do.”
Carrie 2 can't understand why others are so opposed to wearing masks in public.
Transcript
I think the way it’s been affecting my mental health the most, is really disappointment in public health and feeling excluded from spaces because I’m so petrified of getting sick again. I am so scared. And when the masks came off, I feel more frightened in indoor settings. I wear […]
Need for workplace accommodations
Many of the people we spoke with have been unable to go back to work because of their long COVID symptoms. Many also expressed concern about the risk of reinfection once they were back in the workplace. Others have had to reduce their hours or modify their duties in order to cope with their job. For example, Coucoute is a personal support worker. She explains, « Ma job que j’ai faite, c’est une job physique ok, je travaille dix jours. Je ne me sens pas prête de reprendre le travail tout de suite pour faire dix jours. » [The job I did, it’s a physical job, okay. I work ten days in a row. I don’t feel ready to go back to work right away to do ten days.] Translation from original French.
Despite these difficulties, as Ruth reminded us, people with long COVID “want to work, want to feel useful … want to be members of society.” For this reason, participants stressed the need for accommodations in the workplace. As Luna put it, “Everybody who got long-COVID wants to be back to their useful selves. They want to feel like a part of society in a way that they used to be … You don’t have to be 100% disabled to not be able to work a full day … [we need] some kind of partial disability or changing the way work hours are considered.” Jason felt the same way. He told us, “I don’t want to be on disability. I really like working … the [government] should make it easier for … people like me that really want to work … some sort of accommodated assistance.”
Carrie 2 is a family doctor. She explains why accommodation for chronic illness is so important.
Transcript
Our society isn’t very good at helping people with chronic illness. It’s just – we don’t – we say we make adjustments but we really don’t. So what if I can’t go back to being on call? I may have to quit my office because everybody has to be on […]
Katherine's employer is insisting she return to the office despite the risk to her health.
Transcript
Our agency, everyone is forced back into the workplace, even my particular office is even going against the federal recommendation of two days a week in the office, and demanding the entire building come in on one – or sorry, my entire unit come in one day a week. So, […]
Inadequate insurance coverage
The people we interviewed shared concerns about the limited insurance coverage available to many people with long COVID. They also raised the issue of insurers rejecting disability claims from people living with the condition.
Katherine had support from workers’ compensation because she was infected with COVID at her office. However, she points out that, had she not gotten sick at work, “there would have been a 14-week gap in income until long-term disability kicks in … Employment insurance sick benefits … were 14 weeks. But you get paid something like 65 percent of your income. I don’t think I would have survived. I might have lost my home had that happened to me.” Angela expressed even greater concern for people who were self-employed: There’s a lot of people who work for themselves that are dealing with this. And there’s nothing. The long COVID sick benefit was six weeks.”
Lyse doesn't know what will happen when her employment insurance runs out.
Transcript
C’est quoi notre avenir? Il ne faut pas regarder trop loin là parce qu’on ne sait pas. Moi, si mes assurances demain matin, elles décident de… Là je suis sur mes assurances emploi, mais ce n’est pas long l’assurance emploi, c’est 16 semaines. Si eux décident après 16 semaines qu’ils […]
Aislene says that people living with a long-term disability should not be left in poverty.
Transcript
We need more safety nets for people that are disabled so that they’re not living in poverty. The disabled community are given less than $1,000 a month and they are supposed to eat, live in an apartment, and survive and that is just impossible especially with the rising cost of […]
Recognizing long COVID as a disabling condition
Another issue of concern to the people we interviewed was insurers not recognizing long COVID as a long-term disability. Ruth recalls that, at first, her long COVID “wasn’t encoded as anything” other than “Ruth has a bunch of symptoms.” She feels “the policymakers of the government … need to really hurry up and make this a known condition so the insurance companies would have it down.” Kari knows “many people … that … are losing their houses … everything that they’ve worked for because their … [insurers] will not accept long COVID as a disability … It has to be documented and accepted as an actual illness so that there can be some kind of protection for people financially.”
Jennifer 2 says insurance companies should be required to accept long COVID as a diagnosis.
Transcript
If we have accepted that it is a thing, you know, that it does exist, then make insurance companies, force them if you have to, to accept that long COVID is the diagnosis … People are afraid to apply if they don’t know. Even I was afraid to apply, I […]
Valérie describes her struggles to get her condition recognized.
Written testimony
C’est sûr que moi dans mon cas, j’ai un diagnostic d’encéphalomyélite-myalgique qui n’est pas nouveau. Même si c’est ce diagnostic-là, n’empêche qu’il n’est pas reconnu, même si ça fait des dizaines d’années que ça existe cette maladie-là puisqu’ils connaissent quand même ça, ils ont tendance à rejeter très, très facilement les demandes pour des gens qui ont le EMM. Donc la COVID longue rentre un peu dans le même forfait avec ces maladies post-infectieuses comme on sait, fait que c’est sûr que, de devoir démontrer que ça va être permanent, c’est difficile ! Puis là je suis rendue dans le fond à… J’ai fait une demande de révision, parce que ma première demande a été refusée. Et ils m’ont envoyée en expertise voir un de leurs médecins, évidemment. Donc c’est vraiment des combats, des batailles que je dois mener puis que plein d’autres personnes doivent mener comme moi, pour faire reconnaître la gravité de leurs symptômes puis l’invalidité qui vient avec. La notion de permanence c’est très difficile et ça rajoute encore une fois un stress supplémentaire, stress financier, puis un stress de devoir aussi se battre pour faire reconnaître qu’est-ce qu’on vit au quotidien, puis à quel point la maladie a pu chambouler ma vie, dans le fond, celle de ma famille puis ce qui est vraiment dommage, c’est que c’est vraiment ma seule option sincèrement.
[Of course, in my case, I have a diagnosis of encephalomyelitis-myalgia, which isn’t new. Even if it’s that diagnosis, it’s still not recognized, even though it’s been around for decades, because they do know about it, they tend to reject very, very easily requests for people with ME. So long COVID falls into the same category, with these post-infectious diseases as we know, which means that having to demonstrate that it’s going to be permanent is certainly difficult! I applied for a review, because my first application was refused. And they sent me to see one of their doctors, obviously. So it’s a real battle, a battle that I have to fight, and that many other people have to fight like me, to have the seriousness of their symptoms recognized, and the disability that comes with it. The notion of permanence is very difficult, and once again adds to the stress, the financial stress, and the stress of having to fight for recognition of what you go through on a daily basis, and the extent to which the disease has turned my life upside down, and basically that of my family.] Translation from original French.
Support for out of pocket medical expenses and specialist rehabilitation
People living with long COVID were sometimes referred to specialist healthcare providers not covered by Medicare. This could lead to very substantial out of pocket costs that not everyone can afford. Lesley explained that “You often get referred to physiotherapists for pain management or chiropractors for pain management – again not covered by OHIP – super-expensive. All the dental stuff was tens of thousands of dollars for me – not covered by OHIP. So I wish that there could be a bigger conversation between government funding and healthcare.”
Kristen considered herself lucky because she has “great benefits” through her employer. But, as she pointed out, “Other people might not be as fortunate.” She thought there needed to be “more resources for people that are paid for and available.”
Chris thinks that everyone should have access to multi-disciplinary rehabilitation.
Transcript
I think certainly clinics like this – one of the advantages of this one, is it brings in components that might not necessarily be covered by the public healthcare system. The physiotherapy, the psychotherapy, I think have been essential already and will continue to be essential for the rehabilitation, for […]
Support for daily needs
People with long COVID often find it hard to deal with everyday chores and responsibilities such as grocery shopping, cooking, cleaning, laundry and childcare. Several of the people we spoke with thought that policy makers needed to consider subsidies or allowances that would allow people with long COVID to get some additional help with these daily needs.
Jennifer 1 explains why many people with long COVID need daily support.
Transcript
People with long COVID need support on just the daily things. Your cleaning, your food … Being supplemented or at least given a cheaper option for like if you need to use a taxi, or Uber, or what have you to get to an appointment. Because that day you can’t […]
Paulina wishes she could get some help at home.
Transcript
You know, people with young kids. Like, I don’t – I don’t know if it would be even possible to get, like, a – like someone assigned to you that can come once a week to help you whatever – like if it’s putting the dishes away or watching the […]
Long COVID needs a better definition of disability
Several of the people we spoke with reflected on the fact that long COVID is a complex condition that doesn’t easily fit into conventional definitions of disability. Symptoms can be episodic, meaning that they come and go, and are worse at some times than others. More than 100 possible symptoms have been reported. Long COVID also affects different people in different ways and to varying degrees. Our understanding of the condition is still quite limited although it is growing rapidly as we learn more about it. As Christine explains, “Long COVID is an evolving thing and that usually doesn’t pair very well with policy … When you write policy … it has to be worded in a way that is living … COVID might not look like this in a year and it might not look like this in two weeks – so whatever policy you’re making has to address the fact that this is an organic thing that is going to change.
aerik thinks disability support systems don't reflect the reality of living with chronic illness.
Transcript
Disability systems are really built around a very static definition of disability … but really fail for people with chronic illnesses. When the whole system is premised on being able to prove that you can’t do x, y, and z ever, that’s not how most of us experience chronic illness […]