“No, it’s not over”: how Occitanie is setting a precedent on long Covid, the “north face” of the pandemic

One in two patients have stopped studying or working, a factor of isolation which adds to disabling symptoms. Here Jeanne, photographed in Montpellier, in 2021. Free Midi – SOLENE ARTAUD

Sandra Guerrero, representative of the #ApresJ20 association in Occitanie, and Christelle Toustou, talk about their daily lives disrupted by illness. PHOTO S.G.

A pilot territory in the recognition of long Covid, a post-infection disease with multiple disabling symptoms which affects 2 million French people, Occitanie serves as a model in France. If the care pathway is organized, the difficulties remain: skepticism of doctors, delays in diagnosis, administrative burdens, trial and error in care… hellip; a first assessment day was organized on May 23 in Montpellier.

"No, it's not over" : Didier Jaffre, director of the ;rsquo;regional health agency, hopes to have turned the page on Covid, while a new variant, FLiRT, worries the United States.

He keeps open that of long Covid, a "new disease" invalidating with multiple symptoms for 2& ;nbsp;millions of French people (4% of the adult population), extreme fatigue, problems with memory, concentration, sleep, joint pain, dizziness, anxiety&hellip ; immediately taken seriously by the health authorities in Occitanie, more randomly elsewhere.

At the time of a first assessment of two years of treatment of the pathology, Dominique Martin, consulting physician at the national health insurance fund, greets "the Occitan model" at the origin of the new recommendations from the High Authority for Health (HAS), last April .

Organization of care, patient journey, therapies… in Occitania, "the effort is equal to the challenges, what is being done here is remarkable", congratulates the doctor who welcomes regional initiatives, starting with the 2 million euros released by the ARS, which has identified a sector and designated a ;quot;mr Covid long" : yesterday the infectious disease specialist Jérôme Larché, who opened the first dedicated consultation in France, three years ago in Montpellier. Today Eric Donnadieu.

"Among doctors, we are still in a belief system"

They took turns on this "north face of the pandemic" of which "the medical, social and economic impact amounts to billions". How much ? "We do not have precise data. The Americans have calculated that it is 1% of their GDP. In France, if we look at compensation for lost working days, it is 0.6% of GDP. Not to mention the care", affirms Dominique Martin.

According to the first results of a study coordinated by Bernard Ledesert, public health doctor, on 769 patients from Occitanie, there is an average of 136 cumulative days of sick leave per patient. One in two people also experience a "financial impact" of his new situation.

Search: “Things are moving”

Scientific research on long Covid is one of the "arms" of the ministerial roadmap on long Covid, of March 17, 2022, which also consists of: structure a care network, train doctors and inform the general public.

Dominique Martin indicates that 43 research projects are being monitored at the national level, including 26 currently funded, for 17.1 million euros (including 15.5 million euros). State). "One of the objectives is to identify markers of the disease". It is also international: "It seems to me that things are moving. Articles show, for example, the presence of brain lesions in patients.

On care, the rub: "We are still in a belief system, with those who believe in it and those who don't believe in it, especially among general practitioners, on the front line. "There is something that didn’happen".

Result: "There is only an active queue of patients where there is supply" , and "the debate that has emerged on the fact that we are dealing with a "psychological" or physiological could have made things complex. Many people were disappointed with the health system, withdrew into themselves, patients turned to parallel methods".

Head of the internal medicine department of Toulouse, Professor Laurent Sailler, who follows "800 to 1000 long Covid patients", is "afraid of reliving what our infectious disease colleagues experienced, with chronic Lyme disease", another condition that was the subject of suspicion: "We have no control over the psychosocial".

In his active line, there is also this patient "who takes twenty steps and who ventilates at 40 per minute."

"The consultations are psychologically trying, I come out feeling exhausted"

Il "emerged from psychologically trying consultations", with " patients in distress" and "complex cases". By arranging appointments for three or six months, he "is not in satisfactory support". He makes the mea culpa of his profession : "Professionals are often confused".

“Our patients are scandalized”: the obstacle course of recognition in ALD

"600,000 people indicate that long Covid has an impact on their daily life, and the primary health insurance fund tells us that it has only recorded 672 requests for care in long-term condition in Occitanie (including 284 in Hérault and 11 in Gard), this discrepancy in figures does not concern us ;?" The Occitan’air association, specializing in respiratory rehabilitation, points to a situation so complex that it "excludes people from care," she says. The region accounts for 10% of the French population.

The doctors bounce back: "We have difficulty obtaining ALD, we have to call, call back, our patients are scandalized.

In the absence of inclusion on the current list of 30 illnesses likely to benefit from full reimbursement of care, for interruptions of more than six months, long Covid is subject to reimbursement. rsquo;complex arbitrations, in an administrative maquis that even professionals have difficulty unraveling: "I was a general practitioner for thirty-five years, I never knew not this painting, and yet, I am informed!", assures one of them.

"I have patients who are not fit to drive and who travel 45 kilometers to go to the physiotherapist, they put themselves in danger due to their fault support", adds a Lozérien.

"I am contacted by patients who do not have ALD and who tell me that their doctor "doesn't know what to put on it". There is a real blockage, detrimental to care", believes Professor Laurent Sailler, head of the internal medicine department at Toulouse University Hospital.

"You have to meet the criteria, otherwise, you cannot grant ALD", admits Audrey Estragnat, consulting physician at the CPAM of Montpellier, who established the assessment, on a population of patients covered by the general regime. What Dominique Martin explains: "As we do not have a specific ALD for long Covid, we are evaluating a set of criteria. Too many requests are not sufficiently motivated, it is too vague for the medical advisor.

He indicates that in March he issued instructions requesting to give "special attention" to these requests.

For Jérôme Larché, the problem is also the consequence of a "under diagnosis", particularly glaring "in the elderly and children".

Physiotherapists, psychologists, speech therapists, dietitians, occupational therapists… Many of them take turns around the sick. Men, and especially women, who have also reduced or eliminated contact with their family (56%), their friends (78%), cultural activities (85%), or even sports (96%), indicates the study by Bernard Ledesert.

"We must no longer compare ourselves to before, I know that I will never get my life back, we must build a new one",< /em> testifies to Montpellier native Christelle Toustou, one of the many faces of the disease.