Tuesday, May 24

Health. Endometriosis: what the plan presented by Emmanuel Macron provides, which remains unclear

“It’s not a women’s problem. It’s a social problem, ”says Emmanuel Macron in a video posted on Twitter Tuesday. “They are called Sandrine, Lola, Charlotte or Enora. They are exhausted, worn out by a pain that can go as far as fainting. ”This pain is that of endometriosis, a disease that affects more than two million French women and is the leading cause of infertility in France .

This subject “leads today to the launch of our first national strategy to fight against endometriosis”, declared the Head of State in this video. A mission was entrusted in the spring of 2021 to LREM MEP Chrysoula Zacharopoulou, a gynecologist who has been very involved in this subject for years. Its report was made Tuesday at the Elysee.

The President of the Republic has retained his main proposals, which include “the need to guarantee comprehensive, personalized and equitable care throughout the territory, the strengthening of the training of health professionals, the need to invest in research to advance knowledge of the disease ”.

But several points, including the timetable and the allocated budget, remain unclear. Nothing has either been announced concerning the recognition of endometriosis as a long-term disease, which would allow full reimbursement of its treatment.

A three-pronged strategy

Strengthen research
The national plan aims first of all to invest in research to “better understand this disease and its causes” in order to find suitable therapeutic treatments. The Head of State announced that resources will be released “up to the stakes” for research. It will be a question of trying to find if genetic or environmental factors are involved in the onset of the disease, to find how to better relieve the pain …

Engage all territories
Second important point: to offer a diagnostic route that is easily identifiable and accessible throughout the territory. Each region will have to “precisely identify territorial care channels with at least one referral and expertise center”, and the ARS will launch calls for projects. “There will be specific national funding,” said the Élysée.

Improve public knowledge
Finally, the government wishes to develop an “endometriosis reflex” with all audiences, “at school, at university, at home, at the office, and even, and above all, I would say, in medical circles”, Emmanuel Macron clarified.

What the strategy does not specify

The precise timetable
The Minister of Health, Olivier Véran, is responsible for assembling “soon a national steering committee to define the action plan and implement it with the representatives of patients and professionals, and of all the ministries and sectors concerned” , said the President.

This committee will hold its first meeting in February… That is to say three months before the presidential election. A calendar perhaps a little late when the subject had been put on the table by Emmanuel Macron upon his arrival at the Elysee Palace in 2017. The plan sketched out at the time was moreover more or less the same, as shown in an interview he gave in May 2017 to the magazine She.

It would therefore have taken four years to sketch the true outlines of a national plan. In 2019, work was launched to improve care, slowed down by the health crisis. At the time, Agnès Buzyn announced a plan to fight endometriosis already including the measure to create dedicated care channels “from 2019”. Before the government then announced last year its intention to develop a national strategy against this disease.

The budget
Another unclear point: the budget allocated to this late strategy. If a budget has been announced for research and another for the territories, we do not know the amount.

What about l’SC?
Finally, nothing has been announced concerning the recognition of endometriosis as a long-term disease, which has been requested for a long time by associations of affected patients and would allow 100% reimbursement of its coverage. This would also allow women affected by the disease, which is sometimes very debilitating, to be able to be placed on sick leave without a waiting period, which is not currently the case. According to the Elysee, which relies on the High Authority of Health, the conditions for this recognition were not met.

A bill defended by France Insoumise (LFI) and which requires the inclusion of endometriosis in “ALD 30” (long-term disease) must be examined next Thursday in the Assembly.


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