Endometriosis: what would its recognition really change as a “long-term condition”?


The National Assembly passed a resolution to this effect on Thursday, but the government defends another strategy to fight against this pathology which affects one in ten women of childbearing age.

Have endometriosis recognized as a long-term condition (ALD 30): this motion for a resolution from the La France insoumise (LFI) group, supported by MP Clémentine Autain, was unanimously adopted by the National Assembly on Thursday 13 January. Two days after the presidential announcement of a national strategy to fight this disease, which affects one in ten women of childbearing age in France, this vote aims to urge the government to act on a measure which nevertheless arouses differences of opinion. approach within patient associations.

The inclusion of this pathology on the list of ALDs (or ALD 30) does not appear in the 2022 – 2025 national strategy proposal report for the fight against endometriosis, drawn up in consultation with patient associations, and recently given to Emmanuel Macron.

Olivier Veranpersonally unfavorable»

This resolution carried by LFI is not binding. This is a recommendation to the government, which has the final say. And the Minister of Health Olivier Véran, this Thursday morning, set the tone at the podium of the Assembly. “The Minister of Health has showered my hopes, entrust to Figaro MP LFI Clémentine Autain, shortly after the vote. He said he was personally against it. I fear that the Assembly will again be despised and that women, victims of endometriosis, will be condemned to wait even longer”.

Women with this poorly understood pathology, due to the presence of uterine lining outside the uterus, take an average of seven years before obtaining a diagnosis. But concretely, what would change the integration of endometriosis in the list of long-term conditions (ALD 30)?

Reimbursement only on expenses reimbursed by Social Security

It should be specified, first of all, that the ALD – registered on the list, either ALD 30, or off the list, or ALD 31 – only covers at 100% the acts covered by Social Security and the agreed tariffs (tariffs basic social security). Anything related to alternative medicine care and excess fees remains the responsibility of the patient. However, women with endometriosis very often have to resort to alternative medicine to manage their pain, such as osteopathy, acupuncture, yoga, etc.

In concrete terms, the reimbursement of a consultation with a gynecologist is made, if a treating doctor has been declared, up to 70% of the basic price (30 €), or 21 euros. With the ALD, reimbursement would be made at 100% of the basic rate of 30 euros.

Geographic disparities

The real problem lies more in the real access of women with endometriosis to this care within the ALD framework.

For the time being, these patients can already, individually, request their treatment for a condition called “off the list“, referred to as “ALD 31“. For this, they must meet several conditions (starting with having a prolonged treatment of a foreseeable duration of more than six months and particularly expensive therapy), and compiling an administrative file, which does not always have a chance of succeeding.

The associations note in particular great disparities in care depending on the region. Nathalie Clary, president of Endomind, which has long campaigned for the recognition of endometriosis in ALD 30, explains: “Each fund and region has its own criteria, which creates geographical disparities and injustices”. “Treating doctors refuse to compile files, and consulting doctors from regional funds refuse to recognize endometriosis as a real disease”, denounces Nathalie Clary.

For Endomind, inclusion of endometriosis on the ALD 30 list would therefore allow more systematic care for patients.

Harmonize the criteria for awarding the ALD 31, which already exists

The EndoFrance association shares this finding of geographical disparities in care. “With equal forms of endometriosis, we realized that patients obtained ALD in one region, and that others did not obtain it in other regions”, deplores Yasmine Candau, president of EndoFrance.

“If the ALD 30 is adopted, that would be excellent news, EndoFrance is in favor of it”, she points out. Nevertheless, the association pleads for a faster and more pragmatic solution: harmonizing the criteria for granting ALD 31 in the various regional funds. A solution advocated in the report proposing a national strategy to combat endometriosis.

“It is important to act quickly. We understood during the working groups with the government that the inclusion of a new pathology in the ALD 30 depends on the High Authority for Health and that it will take a certain number of years., argues Yasmine Candau. Since the ALD 31 exists, let’s already harmonize the criteria. And this also involves the training of CPAM medical advisors. Then then, let’s think about the ALD 30.”

“In December 2021, nearly 7,000 women with endometriosis already had ALD 31, according to the Ministry of Health, whom I just spoke to on the phone”, says Yasmine Candau. 7000 women out of 1.5 to 2.5 million patients in France, according to the aforementioned report, but not all of them suffering from severe forms of endometriosis.

“For us, the priority must be medical training. As long as a CPAM doctor says that endometriosis is a fashionable disease or simple menstrual pain, we will not move forward., pleads Yasmine Candau again. In addition, having better trained doctors would avoid taking seven years to be diagnosed. Then, the endometriosis will be less likely to be severe, and the usual care will suffice.

“Having better trained doctors would avoid taking seven years to be diagnosed. Then endometriosis will be less likely to be severe.

Yasmine Candau, President of EndoFrance

Exemption from advance fees, reduction of the waiting period, payment of transport, etc.

But putting endometriosis on the ALD 30 list would have other benefits for patients, Endomind argues.

First of all, they could benefit from the advance fee waiver. For example, a patient consulting her general practitioner for a prescription renewal due to her endometriosis would not have to advance the usual 25 euros. Similarly, the patient would not have to advance the cost of drugs usually reimbursed by Social Security.

Then, the patients could benefit from taking charge of their transport to go to the medical consultations related to their pathology – either to be reimbursed for their taxi, or to be reimbursed for their mileage expenses. “But we know that endometriosis is not supported throughout the territory. Sometimes patients have to travel several hundred – or even thousands, when they come from the islands – of kilometers to be treated., defends Nathalie Clary.

In addition, with ALD 30, patients would benefit from a reduction in the waiting period (days) in the event of sick leave. This waiting period would only be retained for the first work stoppage, but not for the other successive stops, and this for three years. The loss of salary induced by these waiting days would therefore be reduced.

Finally, the ALD 30 would facilitate certain working arrangements, particularly in terms of working hours in the event of medical appointments.

For the time being, however, the last word rests with the government. The next meeting was set for February 14 by Olivier Véran, for a first interministerial steering committee.

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