As the Chief Executive of the World Endometriosis Society (WES), Lone Hummelshoj has a birds'-eye view of the issues affecting the estimated 176 million women worldwide living with endometriosis. She has held the post since 2005 and during her tenure, has helped lead the org in calling multiple international endometriosis thought-leaders to the table to discuss how to improve care and collaborative research. Asked which countries are excelling in treatment and which are lagging behind, Hummelshoj doesn't mince her words and says that America is failing an estimated 6.5 million women living with endometriosis nationwide. There is a “desperate lack of consistent care and even access to care in what is a developed country,” Hummelshoj, who will be honored for her lifetime achievements at the 2018 Blossom Ball, tells The Blossom exclusively. “I am disappointed in a country that considers itself the leader of the world in so many things, has failed women’s healthcare so enormously. It is shocking.”
At the heart of the matter, she says, is a broken health insurance system. "How I see it failing is that unless you have the right type of insurance, then you can’t get to a surgeon who is expertly trained in performing this kind of challenging surgery. So I think access to care is a huge issue. Some women are even struggling to get the simple solution of the pill so that they can take that continuously and give themselves a break from painful periods." Hummelshoj also believes that the phrase "endometriosis specialist" is often used too loosely, noting that the quality of care that a woman with endometriosis receives can vary wildly from practice to practice. Nationwide, "There is no regulation as to whether a specific doctor is qualified to treat endometriosis or not.” But change is afoot for American women with endometriosis, because Hummelshoj reveals that WES plans to work with the American College of Obstetrics & Gynecology (ACOG), "to discuss how to improve the status quo." Meanwhile, our European counterparts are leaving us in the lurch. America could take a few notes from Denmark, which Hummelshoj calls the "gold standard model of care in endometriosis."
“Denmark is one of the few, if not the only country in the world where there are national institute of health-led centers of expertise for specialist care in endometriosis; centers, that have developed a high level of expertise not just in surgical care. They also have a tremendous understanding of how to manage other endometriosis-associated symptoms, including infertility.” Germany and the UK, "have similar set-ups, where membership societies (Stiftung Endometriose Forschung and the British Society of Gynaecological Endoscopy, respectively) are managing ‘endometriosis centers.’ There is now an increased focus on expertise and the fact that endometriosis should be treated by a specialist, along the lines of oncology, which I am proud to have been an early advocate of", says Hummelshoj. There is certainly a long road ahead, and Hummelshoj sees several key issues that need to be overcome before endometriosis care can be streamlined, no matter what country women live in.
She finally notes that WES is, “in the process of developing a global consensus on what constitutes specialists and expert care in endometriosis, specifically focusing on patient-centered outcomes. This will be another tool that women with the disease can use to say, ‘Hang on a minute, you are not complying with the requirements of treating women with endometriosis. I deserve to be treated in a service or network that do comply with these criteria.’”
In light of International Women's Day, other global endometriosis leaders sound off on their hopes for the future of the disease. For more on that, visit: http://endometriosis.org/news/