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Bébé atteint d’une maladie rare: course contre la montre pour amasser 2,8 millions

Les parents d’un bébé de 8 mois vivent une course contre la montre avant qu’une rare maladie dégénérative fasse des dommages irréparables sur le petit corps de leur fils. Pour y parvenir, ils doivent amasser 2,8 millions pour acheter le médicament le plus cher du monde, qui doit lui être administré le plus rapidement possible.


Audrey Ruel-ManseauAudrey Ruel-Manseau

La Presse

Nathan est né le 20 octobre 2019. À quelques minutes d’intervalle de son frère Jake. Les différences étaient attendues entre les jumeaux non identiques. Mais au fil des jours, un fossé préoccupant a commencé à se creuser dans l’évolution des deux poupons.

« C’étaient nos premiers enfants, donc on ne connaissait pas le développement normal d’un bébé naissant. Le fait que son frère était là, ça nous faisait toujours un comparatif. Même qu’au début, c’est Nathan qui était le plus vigoureux, mais après deux semaines de vie, ça s’est inversé, et il a perdu des acquis. C’est là qu’on s’est vraiment inquiétés », raconte Marc-André Ouellet, père de Nathan et de Jake.

Après des batteries de tests, tant à Chicoutimi qu’à Québec, leurs parents ont appris que la plus grande différence entre leurs jumeaux était non visible et qu’elle résidait dans leur gène SMN1. Celui de Nathan est défectueux – une distinction microscopique aux conséquences colossales.

« Nathan a l’amyotrophie spinale de type 1. Un l’a, l’autre non, Jake est seulement porteur. Il y a quatre types, et le type 1 est le plus grave », explique Marc-André.

C’est une maladie inimaginable. On ne souhaite ça à aucun enfant.

Marc-André Ouellet, père de Nathan et de Jake

L’amyotrophie spinale est attribuable à un défaut du gène SMN1, qui code la protéine de survie du motoneurone. En d’autres mots, le gène, qui permet normalement à la protéine d’envoyer des signaux vers les muscles du corps, ne fonctionne pas. Sans protéine, les muscles se détériorent et s’atrophient, rendant la respiration et la déglutition difficiles, voire impossibles. À 8 mois, Nathan est « encore mou comme un bébé naissant ».

Course au médicament le plus cher du monde

Dès le diagnostic confirmé, Nathan a commencé le traitement Spinraza, médicament qui permet de retrouver une certaine mobilité. Les doses administrées par ponction lombaire plusieurs fois par année ont déjà permis à Nathan, qui « était quasiment quadriplégique », de lever les bras légèrement et d’exécuter quelques mouvements.

Puis, ses parents ont appris l’existence du Zolgensma, traitement qui n’est pas non plus un remède, mais qui se donne en une seule dose par intraveineuse et qui fait de petits et grands miracles chez les enfants de moins de 2 ans atteints d’atrophie musculaire spinale.

« On suit des enfants partout dans le monde qui ont eu ce traitement-là, et quand ils sont traités en très bas âge et avant l’apparition de symptômes, ils ont des développements quasi normaux. Il y a des enfants qui se tiennent debout, qui courent ! Ce qui était impensable dans le cas d’un type 1 ; 95 % des cas meurent avant l’âge de 2 ans », rapporte Marc-André.

PHOTO FOURNIE PAR LA FAMILLE

Les jumeaux avec leur père Marc-André Ouellet

Le médicament a été homologué en 2019 et est utilisé aux États-Unis chez les enfants de 2 ans et moins, idéalement avant l’apparition de symptômes de l’amyotrophie spinale. Israël, le Qatar, le Japon et l’Union européenne ont emboîté le pas et ont récemment approuvé le médicament.

On apprend qu’il existe un traitement approuvé en Europe, au Japon, aux États-Unis, qui est le plus efficace, qui est le moins invasif et qui serait le mieux pour Nathan. On dit : on le veut nous aussi !

Marc-André Ouellet, père de Nathan et de Jake

Le problème : il coûte 2,1 millions US, soit 2,8 millions CAN. Pour l’unique dose. Non remboursable. Il n’est pas encore homologué au Québec ou au Canada, et les démarches pourraient être trop longues pour que Nathan reçoive le traitement à temps.

« Ce qui est encore plus choquant, c’est le coût rattaché à ça. C’est inimaginable. À la limite, mettons 200 000 $, 300 000 $, on réhypothèque la maison, on vend, on fait tout ce qu’il faut. Mais là, c’est un montant inimaginable. Et de savoir que plus on attend, pire c’est, c’est encore plus crève-cœur. »

Campagne de sociofinancement

L’entreprise pharmaceutique fait une loterie : 100 doses par année sont tirées au sort. Le nom de Nathan n’est pas encore sorti, et la moitié de l’année est écoulée. La famille de Chicoutimi s’est tournée vers le sociofinancement, consciente du défi d’amasser une telle somme en se basant sur la bonté des gens.

PHOTO FOURNIE PAR LA FAMILLE

Avec leur maman, Geneviève Caron

« En même temps, on se dit : si 500 000 personnes donnent 5 $, on est rendus au montant », calcule le papa, encouragé par une famille de Toronto dans le même bateau que la sienne, qui est parvenue à amasser la somme de cette façon.

En moins d’un mois, la famille de Nathan a reçu 122 000 $ en dons sur sa page GoFundMe. Une somme énorme, malheureusement encore bien loin des 2,8 millions nécessaires à l’achat de la précieuse ampoule qui, administrée le plus rapidement possible, pourrait permettre à Nathan d’un jour s’asseoir par lui-même, de jouer et de courir aux côtés de son frère Jake.

> Consultez la page GoFundMe de Nathan

L’amyotrophie spinale de type 1, en bref

> L’amyotrophie spinale de type 1 débute avant l’âge de 6 mois et est la forme la plus sévère.

> Elle touche 1 personne sur 30 000.

> Le traitement est symptomatique et a pour but d’améliorer la qualité de vie et non de guérir. Il n’existe pas de remède.

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Health

Pandemic causes more opioid overdoses in Canada

(Ottawa) Luc Laplante, homeless drug addict 28 years old, has lost three of his recent friends months: they all died from an opioid overdose, a phenomenon on the rise in Canada since the coronavirus crisis.

Michel COMTE

France Media Agency

Isolation, less access to help services for drug addicts and “shooting rooms”, health priority given to COVID – 19… This increase in overdoses since the start of the pandemic has many reasons.

Luc Laplante puts forward another reason: the lack of supervision of the Canadian emergency benefit, paid by the government of Justin Trudeau to ensure a monthly income of 2000 Canadian dollars (1300 euros) to workers who find themselves without income because of the coronavirus.

According to him, the government attributed this bonus without too strict controls, at the risk of seeing fraud multiply.

“People have requested government financial assistance related to COVID – 19 and the 'then spent on drugs,' he says, a few hours after surviving an overdose of fentanyl, a potent opiate.

The Ontario “coroner”, the public officer responsible for investigating violent or suspicious deaths, estimates that the number of fatal overdoses has increased by 19% in the past three months.

In British Columbia (west), the number of overdose deaths jumped by 40% compared to the same period last year.

“Dramatically, other jurisdictions across the country are reporting similar trends,” said the administrator of Canada's public health agency, Theresa Tam, last month.

Double health crisis

D r Tam reported “clusters of overdoses due to unknown or unusual mixtures of illicit toxic substances ”in several cities, including Toronto and Calgary.

British Columbia chief physician Bonnie Henry held back tears at a recent press conference after announcing that 170 deaths from overdoses in May were greater than the number of coronavirus deaths in the province.

“COVID – 19 is not our only health crisis”, he said. she pointed out.

In Ottawa, three “shooting rooms” in the Lower Town district, in the center of the capital, have halved the number of places reserved for drug addicts, in order to comply with the new distancing rules.

Luc Laplante explains that he was alone in a parking lot when he injected himself with a dose on Monday evening, in order to relieve knee pain.

It was a “stronger batch of drugs” than what he used to take, insists Mr. Laplante, after being revived by paramedics, warned by a passerby.

“We already had a lot to deal with the opioid crisis, but we were making progress. Then the pandemic struck, deplores Anne Marie Hopkins, of the community organization Ottawa Inner City Health, which manages a supervised injection center.

M me Hopkins says that some of the people she helped have received the government subsidy, which they then used to pay for a hotel room where they died of an overdose, alone.

According to a study by the University of British Columbia published on Thursday, 59% of Canadians with mental health problems, who may find themselves homeless and addicted, experienced a decline in their well-being during the pandemic.

For M me Hopkins, “It's a scary time for many people already suffering from trauma. ”

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Health

Emergencies stormed

After weeks of calm, Quebec's emergencies are stormed by the sick, while their staff are exhausted by a harsh spring.

PhilippeTeisceira-Lessard Philippe Teisceira-Lessard

La Presse

Thousands of Quebecers did not dare to approach a hospital when the pandemic was in full swing, reducing attendance by almost half, on average, from mid-March until the end of the year. 'April.

Occupancy rates have started to rise again since last month, when the news was better.

“We noticed a significant drop in March and April,” said Marie-Claude Lacasse, spokesperson for the Department of Health and Social Services. “Since the beginning of May, ridership has tended to increase. “

Friday afternoon, 14 Montreal emergencies had an occupancy rate equal to or greater than 100%. The situation was classified as “red” everywhere around Montreal, from Estrie to the Laurentians, passing by Laval and Montérégie.

Sit-in in Longueuil

In this latter region, the emergency rooms at Pierre-Boucher Hospital in Longueuil were in the worst situation: the occupancy rate there was 189%.

In the morning, nurses improvised a sit-in ) a little less than two hours when management wanted to impose compulsory overtime on employees about to end their night shift.

“People say enough is enough,” said Alexandre Bégin, president of the union that represents them, affiliated to the Fédération interprofessionnelle de la santé du Québec (FIQ), in a telephone interview.

The emergency departments of Pierre-Boucher hospital welcome cases of COVID – 19 since mid -March, which left little respite for its staff. “People are exhausted, holidays are partially refused, while people are exhausted,” he said. Mr. Bégin clarified that for the past few days, front line staff have seen the number of COVID cases – 19 hospitalized go back upward in hospital.

Pierre-Boucher's emergencies are “the only place where there are sit-ins from time to time, when people are too distressed ”for the CISSS de la Montérégie-Est. Hospital management has managed to find replacements to fill the shifts, but the nurses promise to start again if necessary.

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Physician-Assisted Dying: Ottawa in court for further delay

(Montreal) The delicate subject of medical assistance in dying was back in a Quebec court Friday morning: Ottawa tried to convince a judge – for a 2 e times – to grant it a few more months to bring its legislation into conformity with the judgment which has widened its accessibility.

Stéphanie Marin

The Canadian Press

If this federal request is accepted, it means that people who are suffering and waiting for medical aid in dying will still have to … wait.

Justice Frédéric Bachand of the Superior Court heard the federal petition Friday morning at the Montreal courthouse.

He believes he will be able to give his judgment early next week.

Last September, Judge Christine Baudouin of the Superior Court had invalidated, and declared unconstitutional, the criteria of provincial and federal legislation requiring that citizens be at the end of their life, or that their death be reasonably foreseeable, in order to be able to seek medical assistance in dying.

In doing so, the judge opened medical assistance in dying to a greater number of people, such as Jean Truchon and Nicole Gladu, these two Quebecers suffering from serious incurable degenerative diseases, who led this legal battle during in recent years.

The magistrate had, however, maintained the valid laws for a period of six months, in order to give the federal and provincial governments time to modify them in accordance with her judgment.

In the meantime, the criteria preventing certain people from seeking medical aid in dying remain valid.

Ottawa had asked for an initial delay to complete its bill tabled in February – it had then explained that the federal elections had resulted in the suspension of Parliament – and obtained it until 11 July.

He now wants a second one: this time, he invokes the COVID pandemic – 19, who also interrupted parliamentary work, including the study of bills. He requests five more months, until 18 December 2020.

“This time, it is the pandemic which is the exceptional circumstance which alone justifies the extension”, argued M e David Lucas, for the Attorney General of Canada.

Parliament needs time to properly study the bill, he argued, especially for such an important issue for society.

In fact, he said, it is only a question of 10 more weeks for Parliament because it will not be sitting before 21 September.

Justice Bachand expressed concern that he did not see in the documents of the federal government a firm commitment on his part to have the bill adopted within the requested time.

After the hearing, Mr. e Lucas explained to journalists that the world is not immune to a second wave of COVID – 19 and that the government, being a minority, does not control everything.

He also argued that those who cannot wait can go to court to be authorized to obtain medical assistance in dying, a possibility given by Judge Baudouin in her judgment.

For its part, the Government of Quebec has instead chosen not to touch its “Act respecting end-of-life care”, declaring that the “end-of-life” criterion would be ineffective from 12 March. His lawyers therefore did not make representations on Friday.

The lawyers for Mr. Truchon – who has since availed himself of medical assistance in dying – and for Ms. me Gladu did not contest the request for delay additional.

“We understand the pandemic context, which is unpredictable. But five months is a long time, “said M e Jean-Pierre Ménard to the judge.

It leaves people in a really painful position, he said.

And if some were able to receive medical assistance in dying with the authorization of the court, they had to pay the costs associated with legal proceedings.

The Collective Dying with dignity and freedom wishes the judge to say no to this request for an extension of five months, “out of humanity and compassion” for those who are suffering and who were waiting for the 11 July impatiently. A shorter period of two months would be sufficient, he judges.

He suggests that the parliamentary committee studying the bill meet virtually this summer to continue its work, so that it is ready for the start of the session in September.

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Health

Lyme disease crossed the river

Cases were identified for the first time as having been acquired locally in regions north of the St. Lawrence

Philippe Teisceira-Lessard Philippe Teisceira- Lessard

La Presse

Previously confined to southern Quebec, Lyme disease has just crossed the river, according to data recently made public by the Ministry of Health.

For years, the St. Lawrence has seemed to act as a natural barrier to the spread of the disease, which can be very serious if not treated in time.

But the barrier fell: in 2019, between 10 and 30% of ticks tested in the Quebec region, in Laval, in Laurentides and Lanaudière carried the bacteria responsible for Lyme disease. These insects are the vector of transmission.

“Before, we did not see any north of the river and this year, they are definitely present north of the river,” said D re Geneviève Baron, from Estrie Public Health, the most affected from Quebec.

We were starting to see them in 2018, but there they are really present [au nord du fleuve].

D re Geneviève Baron, from Estrie Public Health, the most affected region in Quebec

“Cases were identified for the first time as having been acquired locally in the Laval [2 cas] and Capitale-Nationale [1 cas] region,” added Marie- Claude Lacasse, spokesperson for the Ministry of Health.

“The ticks concerned are already present in many regions, indicated the D r Yves Jalbert, one of the lieutenants of D r Horacio Arruda at the Directorate General of Public Health. It is their infection with the bacteria that causes the disease that is growing. This bacterium is transported by intermediate hosts such as deer and white-footed mice. “

500 new cases

The number of diagnoses north of the river is currently much lower than in the southern regions of Quebec, the epicenter of the phenomenon.

In Estrie, the number of new Lyme disease infections more than doubled last year, dropping from 88 in 2018 at 226 in 2019. The Granby region and that which includes Farnham, Dunham and Lac-Brome are particularly affected.

Compared to the last years, “the tick is more present in the region and it is more infected, so it contributes to the increase”, indicated the D re Baron, to explain the increase in cases. “Clinicians in our region are starting to be quite aware, so there are a lot of reports of early illness diagnosed in the first month of infection. […] By having more alert populations and more sensitized doctors, there are surely more diagnoses. “

The doctor Jalbert, of the National Public Health, does not believe that the low number of patients on the north shore of the St. Lawrence is linked to a lack of knowledge of the disease. “It is impossible to conclude that there is an underdiagnosis problem,” he said. Lyme disease is “very well known to clinicians in all regions.”

In total, 500 Quebecers received a Lyme disease diagnosis in 2019, against 304 in 2018. For each year, about a quarter of the patients would have contracted the disease outside Quebec.

The disease is in constant progression: there was only 125 cases counted in Quebec in 2014, while it was extremely rare there are 10 or 15 years. Global warming is pointed out to explain its progression to the north.

A controversial subject

Lyme disease is a bacterial disease transmitted by a tick bite, often caught during walks in the wild, especially in tall grass.

It often causes significant redness around the place of the bite, often accompanied by fever and exhaustion like a cold, explained the D re Baron. At this stage, it is still mild and easily treatable with antibiotics.

If it is not treated in time, it can take a “diffuse” form with which are associated motley symptoms which can be serious, continued the doctor.

A whole alternating current developed around this form of the disease, to which adhere individuals who self-diagnose a chronic Lyme disease to explain health problems in front of which the doctors remain impotent . While scientists are not aware of any other form of transmission of the disease other than the tick bite, many members of this virtual community believe they have been infected by other means, such as sexually.

The Ministry of Health recommends simple ways to prevent Lyme disease infection during outdoor activities: “preferably walk the trails” in nature, “put on your sweater in his pants and the bottom of the pants in socks or boots “and examine his body on return. “If a tick has caught on the skin, [il faut] remove it carefully, as soon as possible, ideally within 24 hours following the activity “, continues the Ministry .

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Health

Surgery: the machine is gone

Many surgeries had to be postponed due to COVID – 19, and will require time to recover the delay, but the machine is indeed restarted.

LouiseLeduc Louise Leduc

La Presse

In Montreal, at the McGill University Health Center (MUHC), interventions resumed in a proportion of 60%, with priority given to patients undergoing cardiology or oncology. Oncological neurosurgery works almost at full speed (at 90%), says Annie-Claire Fournier, media relations consultant.

In addition, for the past fortnight, patients with benign but symptomatic conditions have been able to be operated again.

On the side of the University of Montreal Hospital Center (CHUM), elective surgeries have resumed since the end of May.

“Subject to developments in the COVID situation – 19, the operating theaters of the CHUM will resume at a level equal to or higher than that pre-COVID from September 8, “explains Lucie Dufresne, communications advisor.

This summer, the number of operating theaters available will increase by 15% compared to the same period last year. Half of the operating rooms will operate on an extended schedule, i.e. from 7 a.m. 30 to 18 h rather than 7 h 30 at 15 h 30.

At the CHUM as well as at the MUHC, we assure that the vital interventions that could not be postponed have been carried out.

“A local surgical monitoring committee met every day to establish the list of patients to be operated on, following the prioritization made by the doctors of each discipline. The patients who had to be operated on as a priority were, ”said M me . Dufresne.

At the provincial level, the Ministry of Health and Social Services (MSSS) indicates that we have succeeded in “acquiring stocks of the various critical drugs necessary for intensive care, including propofol”.

The stocks of establishments were thus able to be increased.

“The MSSS is currently working to ensure the sustainability over time of the increased stocks to deal with possible other waves of COVID – 19, ”says Marie-Hélène Émond, responsible for media relations.

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The abortion pill was used in 8% of abortions in Quebec

The College of Physicians has released a report to take stock of the abortion pill in Quebec: in its first year of availability, it calculates that it was chosen by women for around 8% of abortions.

Stéphanie Marin

The Canadian Press

This means that at least 2130 women preferred this option to terminate their pregnancy, rather than a surgical abortion.

The abortion pill, available for pregnancies up to nine weeks old, can be taken at home and is an alternative to surgical abortion.

These data make the College of Physicians say that the abortion pill is well established in Quebec.

The figures indicate a minimum: the College has collected data on the abortion pill from the abortion clinics that offer it. The majority of them – 46 on 52 – sent their figures to the College. But the pill is also available in pharmacies on presentation of a prescription signed by a doctor: these cases were not all counted in the study, but an estimate of approximately 200 women was calculated, included in the figure of 2130.

It is therefore likely that more women used the abortion pill than the figures reported, noted in an interview the secretary of the College of physicians, D r Yves Robert.

He warns that it should not be confused with the “morning after pill”, which prevents pregnancy after sexual intercourse, but which does not interrupt the pregnancy if the egg is already fertilized, as it is the case for the abortion pill.

The latter has been available free of charge in Quebec since the start of the year 2018. However, administrative issues led to a delay of a few months in its deployment, notes the College.

For this reason, the 8% remains an estimate that “takes into account the shorter supply period of the abortion pill”, we can read in the report.

The College thus wanted to deliver an assessment of the first year, by examining the period from 1 er January 2018 to 31 may 2019. During this period, 31 169 surgical abortions were also done in Quebec.

Just over a year after its introduction, 87% of abortion clinics said they offered the abortion pill . And its use has increased over the months under study, it is reported.

The D r Yves Robert is satisfied with the results and judges that the abortion pill is good established.

He points out that in Quebec, women have a real choice: they can opt for the abortion pill or a surgical abortion, because there is a real network of abortion clinics in the province. Half of the clinics in Canada are there, he says. For example, in New Brunswick, which no longer has an abortion clinic, many women have turned to the abortion pill, notes the doctor.

The fact that only 8% of Quebec women chose the abortion pill to terminate their pregnancy is not a problem in itself, he says. First, it was the first year in which it was accessible, he recalls.

And then, “we don't recommend one method or the other,” he explained in an interview.

“We recommend what is suitable for women. It is the objective. “

He also adds that women must have a safe follow-up, in case of complications.

What would be a failure for him would be that this pill is not available in all regions of Quebec.

In the first year, it was used in all corners of the province, according to the data in the report. “But some regions are large! “, He exclaimed, giving the North Shore as an example.

If the woman has to travel hundreds of kilometers to get it, is this a real access? asks the doctor. “There are surely regions which are less well served. “

A second phase of study will verify geographic accessibility.

In Quebec, physicians who were not already performing abortions must have undergone training in the area of ​​voluntary abortion to prescribe the abortion pill. The College of Physicians was criticized last year for imposing this requirement, seen by some as an additional restriction on access, which does not exist in other provinces.

A year later, D r Robert does not believe that this requirement was a real barrier: “this did not prevent more 2000 women from obtaining it”.

Besides, the goal is not that more women take the abortion pill and increase the percentage by 8%. The goal is to make it accessible for those who want this option, insists the doctor.

And if in other provinces nurse practitioners can prescribe it, the College indicates that it has not had any requests from them for this purpose.

He agrees that “this could be one of the options to facilitate access”.

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She will not go to CHSLD

Containment, Manon Rivest knew this long before the pandemic.

Rima Elkouri Rima Elkouri

La Presse

For almost three years she has been in extreme confinement, a prisoner of her house. Three years that she has been fighting for one basic thing: being able to enter and leave her home with her wheelchair.

PHOTO HUGO-SÉBASTIEN AUBERT, LA PRESSE

At 60 years, Manon Rivest does not want of life in a CHSLD or in a residence to which it is believed to be condemned.

Manon became quadriplegic after being struck down by Guillain-Barré syndrome. It was six years ago, a day in May. She was then 54 years old. Overnight, her life as an active woman fell apart.

She was told that she was “a CHSLD case” and that she would never live in her house again. Despite everything, Manon got up. With great courage, she fought to challenge the worst predictions. She fought not to stay in CHSLD. In September 2017, she managed to return home, to her house in Sainte- Marthe-sur-le-Lac, with the hope that her little nest could be adapted to her needs.

Almost three years later, this is still not the case.

On 21 last May, because of a toothache that has persisted for too long, he had to call 911 for a simple visit to the dentist. An ambulance to go to the dentist? Yes, yes, you read that right.

Manon is entitled to the Home Adaptation Program (PAD) of the Quebec Housing Corporation (SHQ). The objective of the program is “to allow the disabled person to enter and leave their home, to access essential parts of it and to carry out their activities of daily life, in a safe manner” .

That's good. This is exactly what Manon wants. Have access to the outside world. Being able to have a bath to relieve her pain – something that has not been possible for her for almost three years.

Listening to her tell me about her fight, reading the mountain of letters she wrote in vain to the Prime Minister, the Minister of Health and Social Services and others, we have the impression that she is in the house which drives you mad Twelve works by Asterix . Last door on the right, ma'am … Except that there is no door on the right.

The CISSS des Laurentides recognizes that his situation is far from ideal, that it is not normal to have to go to the dentist in an ambulance and not to have been able to receive a single bath since September 2017. It is also recognized that, due to the lack of sufficient home care resources, it has so far been impossible to offer physiotherapy in Manon. Admittedly, she receives help morning and evening from the CLSC, which she appreciates. But that's not enough. There are only two physiotherapists for the entire Lac-des-Deux-Montagnes territory and only one physical rehabilitation therapist who provides long-term care.

We recognize all that. But at the same time, it is suggested that, in a way, it is his choice. “We are very, very concerned about the mental health, physical health and safety of this lady. But unfortunately, as she is perfectly capable of making informed choices, it is not possible for us to go against her decision to return to live at home, “said Myriam Sabourin, communications manager at CISSS des Laurentides.

“Our support teams really made him understand all the issues of his decision: the significant isolation that came with it and the steps that would be necessary to adapt his home.

“She understood very, very well the decisions she made and the effects it would have on her own life. And despite that, she maintained her decision. “

For the CISSS to provide adequate home care in Manon (a bath, for example), it is necessary that his house is adapted, it is said. And for his house to be adapted, Manon would have to agree with the SHQ on a solution.

This is where it gets even more complicated. The SHQ favors the solution considered to be the cheapest, which would consist of installing an access ramp at the back of the house. But for Manon, this solution is not suited to his needs or his budget. Since she lives alone, she cannot count on anyone to snow and deglaze the hundred feet behind her house so that she can get out of her house independently. “With this proposal, I will not come out of winter. “

Manon therefore chose another solution proposed by the SHQ, which consists rather in adapting the front entrance of his house, by installing platforms (lifting devices) allowing him to circulate in a motorized wheelchair.

But here it is: as it is not the low-cost solution preferred by the SHQ, the Company considers that it becomes a personal project and does not cover the costs of repair or repair in such a case. replacement of equipment. “It's his choice,” said André Ménard, director of communications for the SHQ.

Manon is therefore at an impasse. She knows that the subsidy to which she is entitled to cover part of the cost of the work is fixed (a maximum of 33 00 $ 0 from the SHQ for work that will cost double). If she also has the financial burden of maintaining equipment on her shoulders, she will not be able to cope.

Manon’s request is entirely legitimate, according to Sarah Limoges, from the organization Moelle épinière et motricité Québec, which helps her defend her rights. “We are at 100% agree with M me Rivest that our domicile, this should be our home and we should be able to decide what is right for us. It would be our ideal world and we will work in this direction. “

At the moment, we are far from the ideal world. Although particularly cumbersome and complex, Manon's case illustrates the need to review the Home Adaptation Program.

“I have several files of members who complain about the PAD. It’s very representative of the collective need to improve it. There is an administrative burden. Often the program is not generous enough in terms of funding or the measures proposed do not necessarily meet people's needs. But that's it or nothing … “

Can we say that all this is ultimately Manon's “choice”? Not really. She did not choose to be sick. She did not choose to end up with a disability. She did not choose to be without work and without pay. What she chose was to live at home with dignity, despite the many obstacles in her way. Before being a choice, it is a right.

At 60 years old, she doesn't want to life in a CHSLD or in a residence to which we believe it condemned. Rather die, she said, bursting into tears. “I was even more unhappy there. I thought I would die everyday. It was hell. You have no freedom. Just because I'm a disabled person doesn't mean I don't have the same rights as others. “

Sarah Limoges adds more. Manon’s place is not in a CHSLD. ” Mrs Rivest is still independent at home. She is very lucid. She has no cognitive loss. She has the full right to feel at home for as long as possible. “

With COVID – 19 which puts the importance of fostering home care at the forefront, isn't ensuring that this right is respected more urgent than ever?

Until better home support policies, what to do? Like other people struggling with similar difficulties with the PAD, Manon turned to crowdfunding. In March 2018, she launched a GoFundMe campaign. Unfortunately, she only raised 3115 $, far from her goal of 75 00 $ 0.

So what ? To move out ? Manon can't imagine it. Too insecure after all she’s been through. Start all over again. Leave a neighborhood she loves. Create a new support network. And after the floods in Sainte-Marthe-sur-le-Lac, what resale value would his house have?

PHOTO HUGO-SÉBASTIEN AUBERT, LA PRESSE

Manon Rivest's house

His house remains his refuge. “This is where I feel safe. I know it may sound outrageous from an outside point of view. But when a place reminds you of happy days and you see your garden in front, your garden in back … ”

That's all he has left. A garden through his window. Hope for a day walking around.

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Health

Notice of strike by attendants at Chartwell seniors' residences

(Montreal) The main union of beneficiary attendants in the private sector has just sent a strike notice in seven private residences of the Chartwell Group. And others could be affected.

Lia Lévesque

The Canadian Press

The seven Chartwell residences concerned for the moment are located in Quebec, Chicoutimi and Jonquière. Some 500 workers would be affected by this unlimited general strike, as of 09 July.

The negotiations between the Quebec Union of Service Employees, affiliated to the FTQ, and the Chartwell Group – the largest private employer in this field in the country – are at an impasse.

These negotiations concern 15 Chartwell residences, but only seven, for the moment, would be affected by the strike, SQEES reported on Wednesday.

To exercise this pressure, the SQEES knowingly chose residences that are located in the cold zone of the coronavirus pandemic, said in an interview Sylvie Nelson, president of the union.

And, even in the cold zone, “if there were cases of COVID, we would suspend the strike,” she insisted.

She specifies that the SQEES already holds a strike mandate in “the majority” of 15 residences of the Chartwell Group.

The parties have been in conciliation for some time already.

“We got there because we met with Chartwell senior management and we proposed a negotiation blitz to settle this before the summer, but they don't have a mandate from Mississauga (where is the direction of the company) “, lamented M me Nelson.

“The goal is not to go on strike. But we want it to be settled, “hammered M me Nelson.

For its part, the Chartwell management was sorry for the moment chosen by the SQEES to disengage. “The period to exercise the strike mandates seems very badly chosen, when we are dedicated to fighting the pandemic which still represents a significant threat to our residents,” said Marie-France Lemay, vice-president of operations and sales for Quebec.

For 15 $ per hour

These workers in private seniors' residences normally earn 13 $ to 14 $ an hour – before temporary premiums paid by the government because of COVID – 19.

They claim 15 $ an hour on hire and $ 1 an hour increase per year.

“We, our people work very hard. And it takes decent wages, wages that look good, “said the union leader.

On behalf of Chartwell, M me Lemay assured that the The company remains fully open to negotiating competitive wage increases for the private residences sector, as we have done so far. We continue to believe that we will come to negotiated agreements. ”

These unions represent attendants for beneficiaries, but also attendants in the dining room, maintenance, reception, for example.

In some cases, the collective agreement has expired since December 2018.

The union still hopes to be able to reach an agreement with the Chartwell Group by 10 July. He also gave longer notice than required to announce his strike.

In the event of a strike, essential services would be provided. The Administrative Labor Court has already ruled in this regard, for previous strikes, even if they are private establishments.

Chartwell management is preparing, just in case. “It is clear that we will make every effort to minimize the impact of these pressure tactics and maintain a safe and pleasant living environment for them [les résidents], while preserving the rewarding work environment that we offer to our employees Added M me Lemay.

The seven seniors' residences affected are Chartwell Appartements de Bordeaux in Quebec, Chartwell Domaine de Bordeaux in Quebec, Chartwell Faubourg Giffard in Quebec, Chartwell (CSH-HCN Lessee) Manoir Archer in Quebec, Chartwell Villa du Saguenay in Saguenay , Chartwell Villa Chicoutimi in Saguenay and Chartwell Villa Jonquière in Saguenay.

Categories
Health

Inactive and sedentary young Canadians

(Toronto) Again this year, the Child and Youth Physical Activity Bulletin from ParticipACTION has given poor marks for physical activity and physical inactivity in Canada.

The Canadian Press

The poor grade of D is given for all physical activity and another D is compiled for sedentary behaviors.

The Bulletin tabled Wednesday specifies that in Canada, only 39% of children and young people comply with the National Physical Activity Guidelines which recommend perform daily 60 minutes of medium to high intensity physical activity.

The data are not very reassuring about the behavior of young people during confinement caused by the COVID pandemic – 19. In fact, a study commissioned by ParticipACTION shows that barely 4.8% of children and 0.8% of young people have complied with national guidelines for movement on 24 hours, compared to 15% before this period.

Research shows that parents who identify as active are more likely to have children who also identify as active. Due to limited access to parks, schools, daycares and group activities, family impact has never been more significant, according to ParticipACTION.

The organization reports that its partner, the Institute for Research on Healthy Lifestyles and Obesity (HALO) at the Children's Hospital of Eastern Ontario (CHEO), played a essential role in producing the Bulletin 2020.