“It’s almost too good to be true, blows Imany, the French singer, known for her commitment to endometriosis alongside the
association Endomind. The fight is advancing, millimeter by millimeter, but it is advancing. A small revolution is underway: a saliva test has been developed to diagnose this disease which affects one in ten women of childbearing age in France.
“Endometriosis is not a problem of women, but of society”, warns François Golfier, head of the gynecology department at the Lyon University Hospital and president of the endometriosis commission of the
National College of French Gynecologists and Obstetricians (CNGOF). A month following Emmanuel Macron’s announcement of the national strategy to fight endometriosis, the entrepreneurs and doctors behind this discovery revealed to the press the instructions for use and the consequences of this new test.
Reduce the time to diagnosis from eight years on average to a few days
At the maneuver, Ziwig, a start-up from Lyon which has developed, thanks to a public-private partnership, this “Endotest”. Which will tell all young women if they have endometriosis. Because this disease is both widespread and difficult to diagnose. The symptoms, more or less intense, can go unnoticed. The disease is usually manifested by pain during menstruation. But also by pain during sexual intercourse (30 to 70%), digestive disorders (35%), intense fatigue (15%) and infertility (30 to 40%).
This “Endotest” would therefore reduce the average diagnostic time from eight years… to a few days. “Today, patients live in hell with doctors who do not always listen to them, recognizes Philippe Descamps, gynecologist at the University Hospital of Angers and vice-president of the International Federation of Gynecology and Obstetrics (FIGO). “We are often taken for crazy, we waste time and money”, confirms Imany, who “as a good student”, had to wait exactly eight years of suffering without answer before obtaining a diagnosis.
GLOBAL INNOVATION
The 1st saliva test to diagnose#endometriosis was born and will soon be available.
Reliability close to 100%, it will revolutionize the lives of millions of women and their care.
Thanks to our partner @endoziwig for the fabulous work carried out pic.twitter.com/bfSb5vNpui— Association ENDOmind (@ENDOmindFrance) February 11, 2022
In addition, the examinations can be heavy and require a long wait: ultrasound, MRI, laparoscopy, etc. And the dramatic consequences of the disease: on average these patients are stopped 33 days a year and the overall societal cost of the disease is estimated at 10 .6 billion euros in France. “During these years of diagnostic wandering, the pain can evolve”, continues the gynecologist. “The earlier the disease is taken care of, the less disabling it will be”, confirms Pricilla Saracco, expert patient and member of EndoMind.
A simple spit can tell you if you have endometriosis
How is this test carried out? It’s very simple and non-invasive: you receive at home the box containing a small tube, in which you just have to spit, which you have to close and send in the envelope designed for this purpose to the laboratory. Who must send you the test result within ten days. The woman can therefore do this self-sampling anywhere, without having to keep the sample in the fridge or travel to the laboratory. “When we met as many women who suffer as me, it’s a small miracle in a kit! Rejoices Imany. We will be able to improve the lives of women. »
But this test is not yet available in pharmacies. Indeed, Ziwig is working with the health authorities, in particular the Haute Autorité de Santé (HAS) to try to get it reimbursed. The price is therefore still under negotiation and the test, which has obtained the European CE label, is not marketed. “We are logistically ready to produce,” promises Gilles Doumer, vice-president of Ziwig. We have scheduled meetings with the HAS, but the reimbursement process in France is long. »
“The Covid crisis has shown that we can quickly provide patients with tests if we consider that it is an emergency situation”, drives home Philippe Descamps. For all these specialists in this gynecological disease, there is no doubt that this test will one day be available and reimbursed.
96% reliability
How did the researchers manage to develop this test? A clinical trial was launched in January 2021, bringing together doctors who are experts in this pathology and engineers from Ziwig. Using high-onset sequencing and artificial intelligence, the team determined the 109 biomarkers involved in endometriosis in 153 patients with endometriosis.
“This test will identify 96% of patients with endometriosis, regardless of its severity,” says François Golfier, gynecologist. “We worked on blood and saliva, says Gilles Doumer, vice-president of Ziwig. The great discovery is that saliva has an information quality and reliability equivalent to blood. »
And this is only the beginning of the adventure. Because this discovery continues to be the subject of clinical trials. “Beyond the diagnosis, this high-definition photo of the pathology might provide information in the future on the stage of the disease, on the risk of infertility…”, reveals Yahya El Mir, founder of Ziwig. Moreover, a new study including 1,000 patients, in particular suffering from infertility, has already been launched. So much exciting and valuable information for the first interministerial steering committee on endometriosis, brought together by Olivier Véranwhich takes place next Monday.
