Annwen Jones OBE
When I look back on 2024, it will be as a year of profound emotion—a time of hope, progress, and poignancy. It began with a shocking forecast: based on the latest GLOBOCAN data, by 2050, 12 million women will face an ovarian cancer diagnosis, with 8 million of them tragically losing their lives. This statistic isn’t just a number; it’s a clarion call that has strengthened our resolve to change the course of this disease and make ovarian cancer a global health priorit .
From Evidence to Action: Making the Economic Case for Change
We all know, too well, the potentially devastating personal impact of a diagnosis of ovarian cancer, on women and on their families and friends. In 2024, in the first study of its type in cancer, our Socioeconomic Burden of Ovarian Cancer in 11 Countries study, we announced the socio-economic cost of the disease. of our Socioeconomic Burden of Ovarian Cancer in 11 Countries study. The results are staggering: across just these 11 nations, the annual socioeconomic cost of ovarian cancer is $70 billion USD. Mortality, the lost contribution of women who died from the disease, accounts for a shocking 91% of this burden. The economic cost of ovarian cancer goes beyond healthcare to the impact on caregivers and on national economies. Improving outcomes for women with ovarian cancer has always been a moral imperative, but we now can show that there is an undeniable economic case that supports our urgent call for governments everywhere to do better.
A Milestone in the Every Woman Study™: Low- and Middle-Income Edition
This year also marked a significant turning point for the Coalition with the completion of data collection for the Every Woman Study™: Low- and Middle-Income Edition. This multi-year project, done in collaboration with our Strategic Advocacy Partner, the International Gynecologic Cancer Society (IGCS), gives voice to close to 2500 women across 22 countries, highlighting their unique challenges and experiences. Reaching this milestone was hugely moving and our hearts are full of gratitude to everyone who was involved, especially the women and the patient advocates that supported the Study. Sadly, since the Study was launched, we have lost some of our biggest champions, including Dicey Scroggins and Celina Benjamin. Their passion and dedication were with us at every step, guiding us towards our shared vision.
Involving 82 hospitals, the study provides an invaluable foundation for understanding the obstacles faced by women in low- and middle-income countries. It was exciting yet humbling to see the top-line results revealed at the IGCS Annual Meeting last month. Long journey times to hospital, low levels of awareness and financial toxicity feature largely in these results as did the poor access to genetic testing, rapid diagnosis, and emotional support. Whilst we eagerly anticipate all of the insights that will unfold, with the first of many papers from this effort expected to be published in early 2025, we confident in saying that patient experience data can provide a nuanced, culturally sensitive, and location appropriate response to dealing with the challenges women face as the burden of ovarian cancer increases.
Strategy in Motion: Progress Two Years Ahead of Schedule
At our recent Board of Directors Summit in Dublin, we took the opportunity to take stock of progress towards our 2023-28- Strategy: From Evidence To Action.
A key theme from our Summit discussions was the value of our partnerships, including our new collaboration with the World Health Organization (WHO) to share and use data from the Socioeconomic Burden Study and the lived experience insights from the Every Woman Study™: Low- and Middle-Income Edition to drive change.
Looking forward, we will be supported by a Global Expert Group, who will advise us on integrating ovarian cancer into existing global health initiatives, especially where impactful work is already underway for breast, cervical, and other cancers. We don’t need to reinvent the wheel; our goal is to work within established frameworks wherever possible to maximise resources and results.
A Look Ahead: Prioritising Prevention
We are also prioritising our focus on prevention as we move from evidence to action. Being able to identify those who have genetic mutations that significantly increase the risk of developing ovarian cancer represents an exciting possibility for preventing the disease. We are also pursuing partnerships on the ground that will help improve outcomes for women with ovarian cancer, for example, through an exciting pilot project with the newly established Nigerian National Institute for Cancer Research and Treatment. We are also very excited and looking forward to working with all our partner advocacy organisations on the roll-out of the results of both Studies early next year.
Leadership and Transition: Passing the Baton
When I first sat at a table of ovarian cancer advocates years ago, we had a bold vision of changing the future for women diagnosed with ovarian cancer through international collaboration, and a clear roadmap for achieving our goals. However, we could have only dreamed of where we are now – not even 10 years from when the Coalition was formally established. It has been my privilege to serve as Chair of the World Ovarian Cancer Board of Directors for the past three years. I am so proud of everything that we have achieved together, at speed, but conscious always of the significant work that lies ahead of us and the crucial need for strong and committed leadership to keep driving positive change. I am therefore extremely pleased to pass the baton to our incoming Chair, Robin Cohen, CEO of the Sandy Rollman Ovarian Cancer Foundation, as she takes on the role this December with a newly expanded board that now includes Dr Julie Torode and Dave Power. This outstanding team, along with Vice-Chair Jane Hill, Treasurer Tammy Brown, Rafe Sadnan Adel, and Runcie CW Chidebe, will continue to keep the patient at the heart of every decision as we fight to accelerate progress. I am also deeply grateful to Director Emeritus Elisabeth Baugh and Scientific Communications Advisor, Eva Schumacher-Wulf, for their enduring commitment to the Coalition. Serving alongside such remarkable individuals has been an honour and I leave the Chair position with a very full heart. I will remain on the Board as a Director and look forward to continuing to support the vital work of this Coalition as we continue our journey turning evidence into concrete action, so we can drive the change we need to ensure no woman is left behind.