femaleWhen I started my PhD in endometriosis resection 25 years ago, the average time it took to diagnose endometriosis in Australia was over 12 years. This period has been shortened to approximately 6.5 years due to growing awareness of the community, which is often patient-led.
It’s still too long, but we’re definitely making progress thanks to well-organized patient groups who are constantly lobbying the government.
Prime Minister Scott Morrison last week Delivering $58 million in funding commitments Endometriosis goes to pelvic pain clinics, diagnosis, research and disease management. Bipartisan support for the Endometriosis Initiative has always been there and we will lobby everyone in government to ensure that these promises are fulfilled after the federal election.
More than $80 million has been generated in real and promised funding for a disease many Australians still do not know about, including other investments in the past four years. This is one of the largest, if not the largest, investment in endometriosis per capita anywhere in the world.
Knowing what to do with these funds was possible because of the voices of the patients.
was through National Endometriosis Clinical and Scientific Trial Network Up-to-date data are available on the severity of the disease affecting 1 in 9 Australian women, girls and women designated as female at birth in gender-diverse communities.
We hope the endometriosis community can share their voices and hear about future changes and through research programs like the NECST registry. The change we all want, the change we all need. This registry will continue to collect data and conduct further research to improve outcomes for endometriosis patients.
The momentum we are seeing in endometriosis awareness and funding is new.
The first time the word “endometriosis” was mentioned in Congress was in 2017 after inviting Gai Brodtmann, who was then a Canberra legislator. endometriosis An Australian event to learn more about this deadly disease. Brodtmann founded the Parliamentary Friends of Endometriosis (PFA) group in partnership with Nicolle Flint, a member of Boothby who was working with the Pelvic Pain Foundation of Australia (PPFA) in South Australia.
This has sparked a series of changes in the treatment of endometriosis made possible thanks to decades of advocacy by grassroots patient organizations such as Endometriosis Australia, QENDO, EndoActive and PPFA.
These organizations have recently joined Endometriosis Western Australia to form the Australian Coalition for Endometriosis, and supported by a bipartisan political will, these groups are Australia’s first Created the National Action Plan on Endometriosis (Nape). – It is considered the blueprint for endometriosis treatment worldwide.
Royal Australian and New Zealand College of Obstetricians and Gynecologists Australian Clinical Practice Guidelines for Endometriosis It is a key outcome of the National Action Plan and provides current best practices for endometriosis based on scientific evidence.
I understand that people get upset with the language used in the guidelines and some question why it is more directive and less explicit. To be honest, we don’t yet have scientific support from quality research that can make categorical statements. Given the management of the pain and pain-related symptoms that have a significant impact on the lives of patients with endometriosis, the best management practices have not yet been determined.
The Guidelines are designed as a comprehensive resource to provide opportunities for individual choice.
Quality and peer-reviewed scientific studies show that not all people with endometriosis want, need, or respond poorly to treatment. We look to a future where there is a cure, but the reality of endometriosis management in Australia today is that management must be as unique as patients suffering from endometriosis.
Research on endometriosis is lagging behind other chronic diseases and more investment is needed to provide answers to the community. This applies to the discussion of resection versus resection surgery.
Although it seems logical that excisional surgery is better for pain, the highest quality comparative studies report no difference in pain outcome. These two surgical techniques. Simply put, not all published studies provide the same level of quality or insight into an incredibly complex, heterogeneous, and debilitating disease.
One of the primary and most important outcomes of the first Australian endometriosis guidelines is to show where our knowledge gap lies and how we can improve that knowledge to provide the highest quality care to endometriosis patients anywhere in the world. .
I have been working with the support organization Endo Warriors for the last 25 years and this is the most exciting time in the field. It is only by harnessing the enthusiasm and energy of people with sufficient experience that endometriosis advocacy groups have been able to communicate results quickly.
I would like to express my gratitude to the group that has dedicated tens of thousands of hours as a volunteer and has been able to develop into an increasingly professional and supportive organization.
These include Qendo’s Endometriosis App to evaluate patient symptoms and treatment, Endometriosis Australia-funded research studies leading to multi-million dollar government-funded research, and EndoActive for New Drug Listings in Australia to manage endometriosis and endometriosis. advocacy is included. that much Pelvic Pain Foundation of Australia PPEP TalkEducating young Australians about endometriosis and pelvic pain.
These efforts and continued engagement with governments have paid off and the voices of the endometriosis community are being heard.
I know the work in this area isn’t over yet, but with the time, investment and advocacy groups you can move from opinion to science to policy.
By working together towards our common goal of improving the lives of all people with endometriosis, it will be possible to move from a disabled disease to a viable life.
Treatment of endometriosis in Australia is far from perfect, but there is much to celebrate | Jason Abbott
Source link Treatment of endometriosis in Australia is far from perfect, but there is much to celebrate | Jason Abbott