The government announced on January 11 the launch of a national strategy to fight endometriosis.
This disease, misunderstood, under-diagnosed, poorly treated, affects one in ten women in France, or more than 2 million French women and whose diagnosis is made on average after seven years, according to the EndoFrance association.
Two days after this announcement, the deputies unanimously voted for a resolution carried by the rebellious elected officials (LFI) to recognize endometriosis as a long-term condition (ALD) 30, that is to say giving rise to the right to exemption from the co-payment.
A strong recommendation addressed to the executive, who will have the last word.
For our readers, this recognition could change the way this disease is viewed and improve care and patient management, even if the battle is far from won.
Years of unanswered pain, condescending remarks, medical wandering, major operations... Living with, recognizing and treating endometriosis is a real "combat journey", supports the thirty or so readers who responded to our appeal on the recognition of this disease as a long-term condition (ALD 30), that is to say giving right to exemption from the co-payment.
This pathology, which affects more than two million French women – ie one woman in ten – is at the heart of a national strategy to combat it announced by the government and approved by the National Assembly.
Encouraging signals to break the omerta on gynecological disease?
"I am delighted that the subject of endometriosis is becoming a social problem", write Soraya, suffering from stage 4 endometriosis, as well as Asma, using the words of Emmanuel Macron.
Endometriosis.
It's not a women's problem, it's a social problem.
The national strategy we are launching brings hope for a better quality of life for millions of girls and women.
pic.twitter.com/86IJj005wU
— Emmanuel Macron (@EmmanuelMacron) January 11, 2022
"Changing the way we look at this disease"
Several of our readers have explained to us with detailed examples how endometriosis harms their intimate life and their professional sphere, but above all impacts their credibility. "Being recognized as sick takes care of me psychologically, my pain is not fictitious", testifies Edwige. She welcomes the "restorative guilt relief" that this recognition brings and regrets that women have also been "discriminated against" for a long time. A bitter feeling shared by Julie, "frustrated at not being taken seriously" during her medical visits. “My colleagues and those around me think that my GP is stopping me for convenience,” says Laetitia, a caregiver. “How can you take care of others when you are not at 100% of your abilities? “, she regrets.
Although it was discovered in 1860, endometriosis remains poorly documented.
"I hope from the bottom of my heart that funds will be released for research and support for these women", preaches Karen, diagnosed at 30 after 14 years of medical wandering, "thanks to a great gynecologist who finally believed”.
"The debate on ALD 30 and sick leave are necessary, they give visibility to endometriosis and may help patients to better live with their disease at work", hopes Morgane.
Recognition of the condition could allow her to "test other pain management techniques that do not require the use of hormones" to relieve her ovarian endometriosis and "to perform additional tests to determine the location of my lesions ".
For Céline, political measures will not change the essentials.
“In my opinion, it would be necessary to work as a priority, namely the view taken by the medical world on this disease”, estimates this mother three times.
She remembers this specialist who had told her without preamble when announcing her endometriosis “that she would have to mourn having a child”.
"If there were still gynecologists, the diagnosis could be made more quickly", points out Sylvie, treated thirty years ago.
She points to the lack of training of general practitioners on gynecological problems and the medical deserts which remain an obstacle to the management of the disease.
"Putting this disease into ALD will not change anything, quite the contrary", according to her.
"Nothing is done"
Attention, if the deputies show themselves favorable to the recognition of endometriosis in ALD 30, the last word belongs to the government.
"Nothing is done, because it is not a bill but a resolution voted unanimously", clarifies sadly Myriam, president of the EndoAction association, diagnosed at 30 years old and multi-operated.
The organization has been circulating an online petition for a year for its realization.
It would pave the way for better reimbursement of health acts by Social Security according to the agreed rates - i.e. excluding alternative medicine and excess fees -, a reduction in the period of waiting days in the event of sick leave, travel expenses for medical consultations,
Real progress that could change the daily life of Chloé, a 22-year-old student. “At university, nothing is in place for young women with endometriosis,” laments the young woman. “My absence is not excused or justified, because it is not officially listed as a disabling illness,” she points out. For Clara, also a student, taking charge of her treatment for the moment not reimbursed would be the end of an anxiety: "Without the treatment, the disease would progress and I would be unable to lead a normal life because of the violence pains ". Just like Léa, 36, who has to pay nearly 30 euros each month for a continuous contraceptive pill, as well as food supplements, probiotics, as well as the consultation of a kinesiologist to relieve her pain.Dorothée would also have liked to be financially supported after her first operation, of which she still had 6,000 euros of costs to pay, because her mutual insurance "of the public service does not support the overruns of fees".
Today, some patients obtain recognition of endometriosis as ALD 31, ie "off the list" of the 30, when the pathology requires treatment for more than six months with particularly expensive drugs.
“While endometriosis is not fatal, it nevertheless ruins life.
There is no cure for endometriosis, but we are in remission”, summarizes Corrine, 60 years old finally “quiet, both physically and psychologically”.
Health
Emmanuel Macron announces the launch of a national strategy to fight endometriosis… without a specific timetable or budget
Health
Endometriosis: The National Assembly recognizes the status of long-term condition
women's health
Endometriosis
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Gynecology
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