Endometriosis: Three years after the announcement of the “national strategy”, resources remain insufficient

This chronic disease, which is characterized by the development of a uterine lining (the endometrium) outside the uterus, causes painful periods, urinary problems, lower back problems, etc. The strategy was accompanied by a research program "women's health, couples' health" (known as PEPR), initially allocated 25 to 30 million euros over 5 years, since reduced to 25 million. The government also gave certain patients access to the saliva diagnostic test from the company Ziwig, as part of the "innovation package", an exceptional coverage of technologies in the early phase of clinical development.

On the ground, patients and doctors interviewed provide a mixed assessment. Several stages of the PEPR have been successfully completed, explains Jean Rosenbaum, the program's scientific coordinator. A project on the epidemiology of endometriosis, dubbed EPI-ENDO, has thus been allocated more than €6 million, he says.

"One of our goals was, through the resources we offer, to encourage researchers in different fields to come and work on endometriosis because they have useful skills. For example, cell biology, epigenetics […] It worked quite well," Jean Rosenbaum also congratulates.

The strategy also relied on the deployment in each region of a care pathway dedicated to the management of endometriosis. "To date, all regions have committed to setting up a pathway. Around ten of them already have fully deployed pathways," the Ministry of Health stated.

In addition, around twenty doctoral and post-doctoral students have received or will receive grants under the PEPR, which also funds around ten research teams, for nearly 5 million euros.

Delays and insufficient funding

But the delay in obtaining this funding is frustrating some doctors. "The plan to combat endometriosis was excellent news," comments Professor Louis Marcellin, a gynecologist at Cochin Hospital in Paris. However, despite receiving the green light for a project led by his institution, "the funds have not yet been released," he laments.

"There was time lost at several stages, a total of a year's delay," acknowledges Jean Rosenbaum, lamenting the administrative hassle. According to the Ministry of Health, "any delays in payments are a matter of contractual management between the National Research Agency, the project leaders, and the research institutions concerned."

"We're not going to say that the existence of this PEPR meets all expectations," regrets Arounie Tavenet of the patient association Endofrance. "We could have hoped for accelerated processes for what is presented as a national priority." Discontent is centered on the delays but also on the amount of public funding in light of the scale of the needs.

The €25 million budget is to be shared between infertility and endometriosis research. According to the Ministry of Health, some €11.3 million has been specifically committed to endometriosis as part of the PEPR. "If we look at the glass half full, it's good, because it gives us momentum," says Valérie Desplanches, president of the Endometriosis Research Foundation.