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.
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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 Véran "
personally not favorable
"
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 in the podium of the Assembly.
"The Minister of Health has showered my hopes
," LFI MP Clémentine Autain
told
Le Figaro , 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 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 the inclusion of endometriosis in the list of long-term conditions (ALD 30) change?
A reimbursement only on expenses reimbursed by Social Security
It should be noted, first of all, that the ALD - registered on the list, either ALD 30, or off the list, or ALD 31 - only covers 100% the acts covered by Social Security and the agreed tariffs (tariffs basic social security).
All that is alternative medicine care and excess fees remain the responsibility of the patient.
Read alsoEndometriosis: better organize the care channels
Concretely, the reimbursement of a consultation with a gynecologist is made, if an attending physician 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 base rate of 30 euros.
In addition, women with endometriosis very often have to resort to alternative medicines to manage their pain, such as osteopathy, acupuncture, yoga, etc.
Geographic disparities
The real problem lies more in the real access of women with endometriosis to this care in the ALD framework.
For the time being, these patients can already individually request their treatment in so-called “
off-list
” conditions, 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 support 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 geographic disparities and injustices"
.
"Attending doctors refuse to compile files, and medical advisers from regional funds refuse to recognize endometriosis as a real disease"
, denounces Nathalie Clary.
Read alsoEndometriosis: period pain, a reality long called hysteria ...
For Endomind, inclusion of endometriosis on the ALD 30 list would therefore allow more systematic care for patients.
Harmonize the criteria for awarding ALD 31, which already exists
The EndoFrance association shares this observation of geographic 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 underlines. Nevertheless, the association pleads for a more rapid and pragmatic solution: to harmonize the allocation criteria of ALD 31 in the various regional funds. A solution recommended in the report proposing a national strategy for the fight against endometriosis.
“It is important to act quickly. We understood during working groups with the government that the inclusion of a new pathology in the ALD 30 depends on the High Health Authority and that it will take a certain number of years
, argues Yasmine Candau.
Since ALD 31 exists, let's already harmonize the criteria.
And this also involves the training of medical officers of the CPAM.
Then, let's think about ALD 30. "
Read also Endometriosis could soon be detected by a simple saliva test
"In December 2021, nearly 7,000 women with endometriosis already had ALD 31, according to the Ministry of Health, which I just had on the phone
," says Yasmine Candau.
7,000 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 the seven years to be diagnosed.
Then, endometriosis will be less likely to be severe, and the usual management will suffice. ”
“Having better trained doctors would prevent it from taking seven years to be diagnosed.
So 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 ...
However, listing endometriosis on the ALD 30 list would have other benefits for patients, Endomind argues.
First, 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.
Likewise, the patient would not have to advance the costs of drugs usually reimbursed by Social Security.
Then, patients could benefit from having their transport covered to go to medical consultations related to their pathology - either to be reimbursed for their taxi, or to have their mileage reimbursed.
“We know that endometriosis is not taken care of across the country. Sometimes patients have to travel several hundred – 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 stoppage of work, but not for the other successive stoppages, and this for three years.
The loss of wages induced by these days of waiting would therefore be reduced.
Finally, the ALD 30 would make it possible to facilitate certain work arrangements, in particular in terms of schedules in the event of medical appointments.
For now, however, the last word rests with the government.
The next meeting has been set for February 14 by Olivier Véran, for a first interministerial steering committee.
