Endometriosis: National strategy seeks new momentum

In January 2022, President Emmanuel Macron launched a plan to better diagnose and treat this disease, which affects at least one in ten women in France. The head of state promised research resources "meeting the challenges" at the time.

This chronic disease, which is characterized by the development of uterine lining (the endometrium) outside the uterus, causes painful periods, urinary problems, lower back problems, etc.

The strategy was accompanied by a "women's health, couples' health" research program (PEPR), initially allocated €25 million to €30 million over five years, which has since been reduced to €25 million. The government also granted certain patients access to Ziwig's saliva diagnostic test as part of the "innovation package," a special coverage for technologies in the early stages of clinical development.

On the ground, patients and doctors interviewed by AFP paint a mixed picture. 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 to use 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," Mr. Rosenbaum also congratulates.

The strategy also relied on the deployment of a dedicated endometriosis care system in each region. "To date, all regions have committed to implementing a system. Around ten of them already have fully deployed systems," the Ministry of Health told AFP.

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

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 year's delay in total," admits Jean Rosenbaum, regretting the administrative hassle.

According to the Ministry of Health, "any delays in payment are a matter for contractual management between the National Research Agency, the project leaders and the research establishments 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 given the scale of the needs. The €25 million budget is to be split between infertility and endometriosis research. According to the Ministry of Health, some €11.3 million has been specifically committed to endometriosis under the PEPR.

"If we look at the glass half full, it's good, because it gives us a boost," says Valérie Desplanches, president of the Endometriosis Research Foundation. "But it's still not enough."

"There is a greater awareness of endometriosis," says Professor Jean-Marc Ayoubi, whose team performed the first uterine transplant in France. He acknowledges the limited funding allocated to the disease: "Only research can make progress."