Emmanuel Macron announces the launch of a national strategy to fight against endometriosis … without a specific timetable or budget

Break the omerta. Emmanuel Macron announced this Tuesday, via a video posted on social networks, the launch of a national strategy to fight endometriosis. A disease “that must be broken out of silence”, in the words of the Elysee. This gynecological pathology, which causes more or less intense pain during menstruation, affects one in ten women, or more than 2 million French women, and is the leading cause of infertility.

In recent years, the media have brought out of the shadows this long-unknown disease, both to the general public and to caregivers. France therefore passes the second with a specific strategy. This Tuesday morning, Chrysoula Zacharopoulou, MEP (LREM) and trained gynecologist, submitted her report – “proposal for a national strategy against endometriosis” -, commissioned by Olivier Véran in March 2021, to the president. Which wasted no time. By choosing to announce himself – and on the same day – the launch of the strategy, Emmanuel Macron wants to show that he takes this aspect of women’s health seriously.

Endometriosis.
For Lola, Énora, Sandrine, and millions of other women, it is a physical suffering, it is also a burden. For this little-known disease is mixed with loneliness, sometimes shame. So let’s hear that word, change things, share their stories: pic.twitter.com/JUDdyaQYVf

– Emmanuel Macron (@EmmanuelMacron) January 11, 2022

Three priorities: research, access to care and information

How will this strategy be implemented? “The president considers that there are three major issues,” says the Elysee. First of all, to gain a better knowledge of the causes of the disease, of the treatments and of the care taken. This is the research component, still in its infancy in this area. For this, the teams will be able to rely on six cohorts of patients already formed. To see if genetic factors, lifestyle or other factors may be involved in the disease. And how to relieve the aches and pains that some women can bedridden during their period.

Second axis: accessibility and quality of care. “So that at all points of the territory are identified treatment channels”, insists the Elysee. Who recognizes that women are not treated the same everywhere. Especially with the lack of general practitioners and gynecologists, two professions on the front line to identify and treat endometriosis, the question is essential.

“We must rely on associations, specialist doctors, so that in each region, there is at least one center of recourse and expertise on endometriosis,” resumes the entourage of Emmanuel Macron. On average, it can take seven years today between the onset of symptoms and the diagnosis. The regional health agencies (ARS) will launch calls for projects.

Third challenge: raising awareness, both for the general public and for caregivers. “Because this disease is disabling in terms of pain, infertility, lists the Elysee. Talking about it means ensuring that treatments are more widely available in medicine. “

The training of interns, midwives and the continuing education of current doctors will therefore take this new priority into account. “Pain manifests itself in college, high school, university, at work. The report places great emphasis on the interministerial nature of the response. »The ministries of Health, National Education, Higher Education, Labor, Equality between women and men will be gathered around the table. The report proposes a certain number of measures on information, training of occupational physicians, which could prescribe certain analgesics. Midwives should also play an important role.

What timetable and what means?

To achieve these ambitious goals, the first step will be the installation of a national steering committee. It should bring together representatives of the many ministries involved, under the leadership of the Ministry of Health, patient associations, health professionals … The goal: “to build a national research program and work on the specifications to issue calls to project quickly for the ARS ”.

Problem: this committee can only meet face-to-face, indicates the Elysee, “as soon as the health crisis allows”, therefore. In other words, not immediately … However, these announcements may seem a little late, only three months before the presidential election. In March 2019, Agnès Buzyn previously announced a plan to fight endometriosis. The main announcement is the establishment of dedicated support channels “from 2019”, again. The Covid-19 delayed this goal. But regions and health professionals did not wait to organize a network on endometriosis, especially in Auvergne-Rhône-Alpes.

Second question still pending: the Elysee has not announced any budget for this national strategy against endometriosis. “Give national funding now, that would risk being too low, argues the entourage of the president. The research program does not exist, which is where we are starting from! It is by building it, as we have done for all the others, that we will be able to assess the financial needs. “

As a reminder, when Emmanuel Macron announced in February 2021 the ten-year national strategy (2021-2030) to fight cancer, it was funded to the tune of 1.74 billion euros over 2021-2025.

Third point that could disappoint the patients: the non-recognition of endometriosis as ALD 30, that is to say the 30 long-term conditions which are fully reimbursed for all the patients). Today, it can be recognized as ALD 31, that is to say “off the list” of the 30. This only applies to the patients most affected in their daily life, that is to say when the endometriosis requires treatment for more than six months with particularly expensive drugs.

“As part of the strategy, the transition from ALD 31 to ALD 30 has been set, argues the Elysee. The Haute Autorité de santé, consulted, concluded that the criteria were not met. We therefore stay on an ALD 31, on a case-by-case basis. But we do not say that the device works perfectly, because it is unknown to patients and caregivers. Recognition in ALD 31 should therefore be facilitated. “