The financial struggle of “long COVID” patients


The financial struggle for

Without private medical insurance or salary compensation for prolonged absence from work, the post-COVID-19 syndrome can quickly become financial hell.

Gabrielle in the accommodation lent to her in exchange for keeping two little dogs.

“It's not my place here,” said Gabrielle Bouchard as she turned the key in the door. She keeps two small dogs in Val-Bélair, in the suburbs of Quebec. The owner left for two months and left her apartment. An exchange of services that costs nothing to either party.

A chance, because Gabrielle does not have a home of her own. Sometimes with a friend, sometimes a tenant for a few months, sometimes with a local in Mexico. She quit working as an administrative assistant at the age of 52, by choice, to live her dream: to go six months a year to Mexico – where she is also a housekeeper and pet sitter – and escape the winter. Quebec. I hated winter to confess, but now I'm coming to terms with it, she says with a mixture of self-mockery and sadness.

Indeed, the long-lasting COVID-19, commonly called long COVID, interrupted his life project. She had to cancel her contracts in the sunshine of House and Pet Sitting in Mexico. While she was very athletic, she no longer has the energy to travel or take care of active dogs. She introduces us to the two little balls of fur who gently hop at her feet without barking: Agnès and Mona, a pug and a shih tzu. They're adorable, they're two old ladies… not hyperactive dogs.

But after a 1.5 mile walk with the two little dogs – not much for the sportswoman she was – Gabrielle will need to lie on the sofa for a good hour on the way back, doing nothing.

She kept a job, a few hours at a time, as a guide-animator for the City of Quebec. When she doesn't feel up to it, she can simply not submit availability for the posted shifts, which reduces her income.

I had COVID in February 2021. At that time, my back really jerked off, like a stake had been driven between my shoulder blades. My world came crashing down, the dizziness started. The attacks lasted for hours and caused headaches and nausea. All kinds of symptoms appeared, she says. Strangely, for three weeks, I have a little less, but I now have immense fatigue that I did not have. Like plugging in a cell phone to charge it but never going up more than 30%.

Immense fatigue, dizziness, head gripped like a vice force Gabrielle Bouchard to rest, whereas she was very athletic before.

Before having COVID-19, Gabrielle Bouchard already had a deliberately modest, and even frugal, lifestyle, she says. She had put money aside to retire early. Now, with very little income, she dips into her savings to pay for groceries and $120 an hour physiotherapy to ease her pain a bit.

“I did a little statement of the physiotherapy bills I've been paying for a year and I'm down to $3600.

— Gabrielle Bouchard

What might have seemed like a luxury to her has become an essential relief for her. She realized this when she took a break from care to give her wallet a break. Me, I was better, my bank account, no. I spent a month without going there and there I… crashed, there, things changed, nothing was going well. So I started going to see him again.

Gabrielle is among those who have no insurance, compensation or benefits to help them deal with the financial problems associated with the long COVID.

  • Private or group insurance: offered by some employers, variable coverage which may include salary insurance and reimbursement of prescription care
  • EI Sickness Benefits (Federal): Paid for up to 15 weeks, 55% of earnings, maximum $638 per week, provided sufficient EI premiums
  • CNESST (Commission for Standards, Equity, Health and Safety at Work) benefit: you must have been infected with COVID-19 at the place of employment. Overwhelmingly, healthcare workers get it
  • Disability program of the Régie des rentes (Quebec): the disability must be severe and prolonged, so as to be likely to result in death or to last indefinitely. Difficult to prove at the moment
  • Aide sociale or Solidarité sociale in the event of severe constraints on employment (Quebec): last resort assistance. It is not necessary to have any more savings or assets such as an apartment or a house

Nothing, no. Self-employed, you are not entitled to anything. No, there's nothing for that, laments Vicky – fictitious first name, because she wishes to preserve her anonymity, for fear of losing her small part-time job. There are still prejudices and I don't want to add problems to myself.

Vicky is 50 years old and lives with her husband in a house he built himself, surrounded by of a wooded area, a little north of Quebec. A beautiful environment that she has often hiked, walked or snowshoeed in the winter.

Vicky takes short walks around her home. Nature does him good.

She still likes to take a few steps around her house, to sunbathe and breathe the fresh air among the trees, in the company of partridges and squirrels. During these two long years of COVID, nature has always done her good.

She doesn't know how long it will continue. Her spouse is asking for separation and she will have to move sooner or later. The long COVID, with its procession of pain, immense fatigue and incapacity, ended up killing his couple.

The house is his, she was paying for other expenses, they had agreed that way. She hadn't planned for it. It's a shame, I had put my life in the hands of someone else. I didn't expect that one day we would be together anymore, she said, her eyes red with tears.

“I lose everything. I lose my spouse, my home, my environment, everything that comes with it. I will surely find myself in a very small apartment, I don't know where. In any case, I try not to see too far, I really try to live from day to day, take care of myself.

—Vicky, long term COVID sufferer

Self-employed for 24 years, she did residential and commercial housekeeping. I went to big houses. I had a lot of work here in my community. I was a very physical person, a perfectionist, so I was immediately liked and recommended, people wanted to be on my waiting list. So I was making a very good living, she says proudly.

The long COVID robbed her of her energy. Vicky can no longer vacuum, climb the floors, polish for hours. She lost all her customers.

She tries to earn some money anyway. She found a small part-time job, which occupies her three days a week, a little more than two hours a day. A retired job as she says, without obligation. If she's not well, she says she's not available and no one asks why.

This job, I want to keep it, that's all that I have. If I don't do that job anymore, I don't have any more income from it. There's really nothing there, she repeats, anxious. It's only two fifteen, then I'm not telling you that it's easy to do them. I agree to suffer by telling myself that it's not seven o'clock!

When she manages to put in her hours, she earns $600 a month. Recently, she had to miss two weeks, due to neurological problems in her head. Terrible pain, her head felt like it was burning.

It's not always easy for her to describe her symptoms and, above all, to be understood by her doctor, so she writes down everything, everything, everything that has happened to her for the past two years. Initially, it was for fear of forgetting – memory problems are part of the aftermath of COVID-19. Then she thought it might come in handy one day. The folder she clutches in her hands is five centimeters thick. We can see well-classified sheets, with paperclips. Me, I'm a perfectionist, she says again.

In this thick file, two years of symptoms, examinations and treatments, recorded by Vicky.

The diagnosis of long COVID is difficult to obtain, because few doctors yet, apart from a few experts in Sherbrooke or Montreal, take a close interest in this disease.

Like Vicky, Gabrielle Bouchard came up against a form of skepticism on the part of health personnel. Her family doctor told her she had anxiety. She left with a prescription for antidepressants, which she never took. Like Vicky, she is certain that it is not depression. What she is experiencing is consistent with many testimonies expressed in support groups and with articles written on the subject of long-term COVID.

“The neurologist and my doctor told me to stop thinking about it and read about it! Of course, I read a lot, I want to understand what is happening to me! But what I read is The Lancet, Nature, Science. It's really scientific articles, it's not… Robert Caron from Saint-Casimir or from I don't know where. »

—Gabrielle Bouchard

His lifeline is physiotherapy. Even if her wallet does not like it, Gabrielle Bouchard has resumed her appointments once a week, in a private clinic in Sainte-Foy. The care is not reimbursed by the State.

And in the public network, getting a first appointment can take months. Before the pandemic, approximately 20,000 Quebecers were waiting for services, according to the Ordre professionnel de la physiothérapie du Québec.

So, shall we resume the head massage? Gabriella asks. Yes, come on your back, we'll go see that, replies physiotherapist Robin Plourde, in a soft voice.

She lies down and closes her eyes. Hands pull back his long curly hair, then land around his head, fingers spread, without moving, at least apparently. With tiny movements, Robin Plourde stretches, supports, massages tension and stiffness. Ah! It feels good, sighs Gabrielle.

Robin Plourde, physiotherapist, does not cure the long COVID but manages to relieve certain symptoms, here by a massage of the skull.

To be very honest, I don't treat COVID long, says Robin Plourde, a physiotherapist for 15 years. I act on the mobility of the nervous system. Whatever the cause, whether it's a head injury or a virus, what interests me is neural mobility, which creates effects on the whole body. And we realized, with Gabrielle, that her symptoms were decreasing. But there is no direct causal link. No cure in sight, with this treatment, but at least relief. When he starts processing the skull, says Gabrielle, my brain is like a closed rosebud. And when he finishes, it feels like my head has bloomed. His visual acuity improves, the dizziness subsides. Sometimes the benefits last a few days. Sometimes, no. It doesn't last, Gabrielle admits, but at least while it lasts…

For Vicky, it's a matter of life or death. Yes yes! Me, I thought of death! I thought I would die anyway, because I was no longer able to breathe. I can't stay like this all my life! That's out of the question here.

She remembers her first visit to the osteopath. Her head didn't move, she was stuck like a piece of bread. It made me feel so good that I cried, I cried on his table, I cried throughout the treatment! Same thing with the massage therapist. She was able to really relieve me, to free me from my pain.

It took him 10 treatments to undo his pain in the head. She lists: Ten $115 treatments. Massage therapist, it's 80 bucks. Physiotherapist, it's $105. She paid for everything out of pocket, with her income of $600 a month. Makes me, everything happened. That was just important. My savings are where they go. I will not stay home when these people can help me. I'm going to pay, I'm going to pay, I'm going to pay.

In its latest budget, Quebec announced $20.5 million to set up 15 clinics dedicated to COVID long, across the province. This investment – ​​the first in Canada of such magnitude for this disease – will facilitate diagnosis and the pooling of expertise.

But it won't fix rehab waiting lists — instead, they're likely to get longer, with new needs due to long-lasting COVID. Nor will it help patients without insurance cover to pay for their care in the private sector, especially when their absence from work deprives them of any income.

The MP for Joliette for the Parti Québécois, Véronique Hivon, is sponsoring the petition of a group of citizens, who are asking for the recognition of long COVID as a disease that can lead to disability, under the terms of the Régie des rentes du Québec. As an MP, I have really had heartbreaking calls in the last few months. I think the impact of this disease is greatly underestimated.

As of April 11, 1430 people had signed the petition, less than a month after its launch .

Véronique Hivon, MP for Joliette

To date, the Régie des rentes flatly refuses [to compensate patients with long COVID], claiming that it is too new, that further research is needed, deplores Véronique Hivon. So, it's the dog running after its tail, there! Because there is not enough research work being done, and many state organizations do not agree to recognize, support and compensate.

The Legault government does not plan to create a compensation program for victims of the post-COVID-19 syndrome. Labor Minister Jean Boulet explains in an email that this disease is not yet well understood. It returns the ball to the Minister of Finance, responsible for the Régie des rentes.

Retraite Québec reminds that a pension is granted in the event of severe and prolonged disability, which means that this disability is likely to result in death or last indefinitely.

The MP believes that the state has the means to help the victims of the long COVID, at least by putting in place an emergency program, to prevent them from falling into financial trouble.

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“There has been so much energy put, with good reason of course, into all kinds of programs, to support all the effects of the pandemic and of COVID, it's still quite serious and ironic that we forget the people directly affected in the long term by this pandemic.

— Véronique Hivon, MP for Joliette

“Today I live in hope,” says Vicky, who decorated the table for the interview.

The variety of symptoms, their uneven intensity from day to day or from person to person, make this disease and its financial repercussions a complex subject, no one can say otherwise.

But for Vicky, Gabrielle Bouchard and the thousands of people who are members of support groups on social networks, in Quebec and elsewhere in the world, life has become much more complicated. And it will not always be possible to put a lid on the pot.

  • Radio report on the show Désautels le dimanche of April 10, 2022: L' financial impact of the long COVID
  • The “long COVID”, the hidden face of the pandemic
  • Petition to the National Assembly: Petition: Recognition of long COVID as a disease that can lead to disability


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