The “tip of the iceberg”: 700% increase in the number of patients waiting for long-term COVID treatments

More than 5,000 patients are registered on the waiting lists of the 15 clinics specializing in long COVID in Quebec, the “tip of the iceberg” according to experts who point out that no curative treatment yet exists for these complications of COVID. -19.

Meanwhile, nearly 2,000 patients are being monitored for a diagnosis of long COVID at the start of 2024, according to figures provided by the Ministry of Health. Data which has also seen strong growth in the last year (see box).

This increase is partly explained by the opening of seven clinics in one year in different regions.

“We opened our clinic and we already had a waiting list!” says the program manager responsible for the long COVID clinic at the Integrated University Health and Social Services Center (CIUSSS) of the Capitale-Nationale, Valérie Brodeur.

In 2024, the average time to be treated in either clinic was approximately one year.

However, this delay can be extended, since you must first obtain a diagnosis of long-term COVID from your family doctor, a process that is always “difficult” according to M.^me Embroiderer.

“[Les médecins] must make sure to eliminate all other probable causes of the symptoms, explains M^me Embroiderer. Several specialists may be consulted in the process.”

“There are still health professionals who do not believe that this condition exists,” adds Dr.^r Alain Piché, medical director of the clinic specializing in post-COVID infections at the Sherbrooke University Hospital Center (CHUS). “So I think we’re only seeing the tip of the iceberg.”

This clinic, one of the first to open in Quebec in May 2020, will treat just over 500 patients in 2024, five times more than in 2023.

The D^r Piché associates this popularity of the clinic with the “aggressiveness” of their treatment of the disease. He gives the example of administering an opiate inhibitor, naltrexone, at low doses for chronic fatigue.

“There is no cure for long COVID,” he recalls. For now, on the clinical side, it’s more symptom management.”

“Quite rare” file closures

In the Quebec region, this symptom management is done with the help of occupational therapists, social workers and nurses.

The most common symptoms include debilitating fatigue, memory problems, shortness of breath and chronic headaches. Nearly 200 different symptoms are identified for long COVID in the scientific literature.

In the case of chronic fatigue, these professionals try to implement energy management for patients. “To see how we can introduce breaks during the day,” explains M^me Embroiderer. “It is the base of everything.”

If he sees a lot of patients at the CHUS, the closure of files “is quite rare” for the D^r Piche.

“We provide follow-ups even if there is no definitive treatment for the disease,” he explains. “Treatments will arrive in the coming months, so it is important to follow up with these patients,” he adds, optimistically.

Evolution of waiting lists between 2023 and 2024

• People on a waiting list in 2023: 710 (for seven clinics)
• People on a waiting list in 2024: 5003* (for 15 clinics)
• People followed for long COVID in 2023: 578
• People followed for long COVID in 2024: 1903

Source: Ministry of Health and Social Services of Quebec

*With almost 3,000 people on its waiting list, the Montreal Clinical Research Institute (IRCM) has almost half of the patients waiting for all of Quebec. Asked to explain this situation, the IRCM clarified that, unlike clinics affiliated with hospitals or integrated health centers, it is not necessary to have a diagnosis from a treating physician to register on its list. waiting.

Exasperated by the wait in Quebec, he goes to Mexico to seek treatment

Faced with the never-ending wait for treatment, a man from the Quebec region suffering from long COVID decided to pay $10,000 to undergo experimental treatment with stem cells in Mexico.

“I had such intense headaches that I went to the emergency room because I felt like a vein was going to burst in my head,” says Alexandre, a fictitious first name, because given the nature of his employment, he cannot be identified for the purposes of this report.

He was diagnosed with long-term COVID in November 2023 after consulting an infectious disease specialist in Quebec. He had contracted COVID-19 a year earlier and was doubly vaccinated.

Without news from the CHUS clinic in Estrie, he “did his research” and found several private clinics in Mexico offering stem cell injections, particularly to treat long COVID. So he flew to Cancun with his partner and paid $10,000 for the injection.

“I was willing to pay the price and I was willing to try other businesses,” he says. I no longer had my life, I could no longer do anything. I’m a guy who trains, who goes to see my friends, who has fun […] And then, I couldn’t do anything anymore.”

Questioned about the use of stem cells with patients with long COVID, Dr.^r Alain Piché from the specialized clinic at the CHUS describes the scientific basis on which this treatment is based as “very thin”.

“The consequences may outweigh the benefits,” he warns, citing in particular warnings from the Food and Drug Administration in the United States. Injecting foreign bodies is not without risks, he adds.

D^r Piché, however, says he “understands very well the appeal” of these “at the very least questionable” methods.

“Obviously, [les patients] suffer from chronic symptoms and they then become vulnerable to this kind of speech,” he analyzes.

Since his injection in Mexico, he now estimates that he is “95% mentally” recovered.

However, he was warned that the treatment could only be effective for a year. Alexandre now hopes that a treatment will be developed by then in Quebec.