Thank you.
Good evening, Madam Chair and committee.
I am an endometriosis patient advocate and Ph.D. scientist.
My long journey with endometriosis inspired me to become one of the founding board members of The Endometriosis Network Canada. I'm currently the chair of the board of that organization and the co-chair of EndoAct Canada.
Although I started having endometriosis symptoms as a teenager, it took me over 20 years to get a diagnosis. During that time I suffered from debilitating symptoms. This caused numerous changes in the course of my life, including deciding not to pursue a career in academics after my Ph.D. Almost 30 years after my symptoms started, I was finally able to get effective treatment and regain my quality of life.
We are speaking to you today because there is a crisis in endometriosis care in Canada, with significant gaps in our biomedical, clinical and health system services.
Endometriosis is an inflammatory disease that causes debilitating pain, infertility and other symptoms that affect the whole body, leading to significant impacts on individuals, families and society. There is no definitive cause or known cure for endometriosis. The disease is managed with specialized surgical care, other medical care and multidisciplinary services.
Aligned with the endometriosis research priorities published in the leading medical journal, The Lancet, in 2017, we will describe three main health research domains with inadequate research and talent deficiencies, and some proposed solutions.
On domain one, there is a limited understanding of the cause of endometriosis from a basic research point of view, leading to limited therapeutic options. This presents an opportunity to attract top talent, as the enigmatic nature of endometriosis is incredibly attractive to scientists and clinician scientists alike.
On domain two, there is a lengthy delay in diagnosis of five to 11 years. One reason for this is there is low awareness of the disease among the general public and health care providers, which is rooted in historic and systematic dismissal of women's pain. In addition, medical tools that would allow early identification and diagnosis of endometriosis are lacking. There is an opportunity to transform the lives of people with endometriosis through research investments that could decrease the diagnostic delay.
On domain three, in addition to long waits for specialized surgical care, the current array of treatments is inadequate and leaves most people with endometriosis continuing to have symptoms, with a tremendous impact on their daily lives. Many of the one million Canadians with endometriosis may be interested in pursuing career goals in research and innovation, but are unable to do so because of inadequate treatment. I personally faced this situation.