a need for recognition according to Endomind

Endometriosis, a painful but inconspicuous gynecological disease, gradually appears in the light. At the end of July, the Minister of Health, Olivier Véran, announced that he had requested the opening of an investigation for the inclusion of this little-known disease on the list of long-term illnesses. If this is the case, patients suffering from this disease could benefit from exemption from user fees, or considerably lower the cost of their care. It is impossible to say for the moment whether this approach will succeed, but this first step is already a great victory for Nathalie Clary, president of the Endomind association.

Does this announcement of the opening of the investigation surprise you?

It is not a surprise. Since March we have been preparing this campaign with parliamentarians. I had several exchanges with elected officials during the confinement and after. We launched this campaign in May and I was received at the National Assembly to talk about it. Several hundred parliamentarians supported our approach. The initiatives, such as the interpellation of the Minister of Health, were carried out jointly. I am very happy with this first reaction because it is the first time that endometriosis has been studied for possible inclusion on the list of long-term conditions (ALD).

Why is this important to you?

We observe that it is an expectation of the sick. There is such denial around this disease that this recognition is important. Of course, women with endometriosis also expect better care and treatment, but its recognition would already be a huge step! For example, during the first wave of Covid, people suffering from only one pathology among the list of those registered on the ALD [comme le diabète, la mucoviscidose ou l’insuffisance cardiaque grave, NDLR] were recognized as ‘vulnerable people’. However, women with endometriosis have had to fight to obtain sick leave or be able to work from home when they also have a chronic pathology. It is unfair.

Today, it is possible to have financial assistance by making an off-list ALD request, but there are no criteria for endometriosis at the national level. As a result, a patient living in Marseille can benefit from off-list ALD while another with the same disease with the same pain and disabilities in her life but living elsewhere will not have it: it’s unfair! We ask that all people with endometriosis can benefit from ALD because there is a lot of disparity. However, people who are against this generalization tell us that it will pose a problem in terms of funding. [selon l’Inserm 1 femme sur 10 en âge de procréer est atteinte de cette maladie, NDLR]. Personally, I don’t see how that poses any problems: if a woman is not in pain, she will not be treated. Those who will use this right are those who will need it, and not all of them need the same monitoring.

What is the average cost of treatment for endometriosis?

It’s hard to generalize. The disease has several stages and the reasons for its evolution, stagnation or regression are not well understood. Moreover, the impact [la douleur, NDLR] endometriosis varies greatly from person to person. Sometimes a disease in stage 4 causes little pain, while another in stage 1 will suffer greatly. The one with stage 4 endometriosis will need less consultation, while the stage 1 patient who suffers a lot will have more regular care with sometimes at least one consultation per week. And there, the bill climbs quickly.

Endometriosis remains an incurable disease, there is no effective treatment and there is little research on it. There are pills that will regulate the cycle, sometimes put the disease to sleep and in some reduce the pain. Otherwise, it is possible to benefit from hormonal treatment to create an artificial menopause but it is only possible to take it for 6 to 9 months in its life, so it is not a solution. Or it is possible to opt for surgery but there is no guarantee of success, recurrence is common. For my part, I have been operated on 4 times, and I know people who have been operated 10 or 20 times. Surgery also does not solve the problem.

More serious: the three treatments prescribed for endometriosis are the subject of an alert from the ANSM (National Medicines Safety Agency). Lutheran, Lutheran and theandrocur can cause meningioma [tumeur cérébrale, NDLR]. However, there are no other solutions offered to patients. There is a huge need for research and including endometriosis in the list of ALDs would increase awareness among physicians. This registration is an additional lever to make this disease better known, where there is still a great deal of information and training work for doctors and patients.

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