Recent Developments

The Society of Gynecologic Oncology (SGO) Annual Meeting on Women’s Cancer is an important touchpoint for the entire community – clinicians, researchers, and those of us in advocacy. A key opportunity to learn about the latest advancements in gynecologic cancer treatment and research.

With no effective screening tool, ovarian cancer prevention remains a crucial area of exploration. The latest update at SGO 2025 on the TUBA-WISP II study was a particularly welcome addition to the program. This study, focused on women at high risk of inherited ovarian cancer, prioritizes preserving quality of life without compromising the benefits of risk-reducing surgery – an essential consideration for those facing these decisions.

The program also included an update on study data highlighting the benefits
of antibody-drug conjugates (ADCs) in treating platinum-resistant ovarian
cancer. ADCs are the new players in ovarian cancer treatment – this is an
encouraging development with significant potential.

Most importantly, it was a privilege and a joy to witness ovarian cancer advocates take the stage, sharing their experiences, insights, and priorities. The advocacy panel at the Patient & Advocate Education Forum was the most powerful I’ve ever attended. Speakers addressed everything from the stigma of a gynecologic cancer diagnosis to its impact on relationships, mental health, and faith – and the hope they carry for those who will follow in their footsteps. We are in good hands with such powerful advocates on our side.

I had a great opportunity last week to showcase the Every Woman Study, low- and middle-income (LMIC) edition at the European Society for Gynaecologic Oncology Meeting in Rome, with a poster outlining potentially novel indicators for optimal cytoreductive surgery beyond age and stage of disease on diagnosis. Using data from 2446 women in the 22 LMICs, our initial analysis shows levels of awareness, family income, human development index status of the country and distance to treatment centre as potentially also playing a part.

Click here to read the poster. 

Conferences such as these are very much about the latest treatments or procedures and constantly push the boundaries of what clinicians can achieve. It was great to hear after several years, the language coming together around the use of PARP inhibitors – “not using them on women with BRCA mutations or those who have homologous recombination deficiency (HRD) is akin to causing harm”, and the first breakthrough in several years for women who are platinum resistant, with Mirvetuximab, an antibody conjugate drug or ADC. Are you lost already in the acronyms? It is all very positive, but for the World Ovarian Cancer Coalition, and clinicians working in low- and middle-income countries, these treatments, and the genomic profile/genetic testing that are needed to correctly use these drugs are still a pipe dream in many situations. It’s not just about access, but affordability, with the very expensive price tags falling on the women and their families. Not one patient in our African cohort in the study received a PARP inhibitor.

So it felt like an important moment to get issues like this raised. I was also really interested to come across work by the GINECO group looking at KELIM scores in Japanese women. KELIM is an emerging method of using CA125 scores to predict responsiveness to chemotherapy, and in the future could also help determine HRD status in the form of a very cheap test. They showed that for Japanese women, the cut off figures for CA125 would need to be different, basically that women from different ethnic backgrounds respond differently, yet for the time being, all women are prescribed drugs and procedures based on trials carried out on mainly white women in the global north. There was also an interesting presentation on toxicity with PARP inhibitors, and how that varied, depending on where the mutations in the BRCA gene occurred. The future really could be much more personalised medicine, as long as the ovarian cancer community and governments work hard to involve and include women from diverse backgrounds.

It’s always hard to know how many people saw the EWS poster, but I had some positive chats with researchers, the poster was also available online and will be published in the International Journal of Gynecologic Cancer. I was delighted as well to meet Dr Edson Mamani, from Arequipa in Peru. He bounded up to me like an old friend, to let me know he had been one of the doctors recruiting women into the study, and was thrilled to have taken part in such an important piece of work.

Thank you ESGO for the opportunity.

As I step into the role of Chair for the World Ovarian Cancer Coalition, I feel deeply honored and incredibly energized. The shoes I have to fill are significant, but I’ve had the privilege of learning from the best—Elizabeth Baugh and Annwen Jones OBE. Their leadership has shaped the Coalition into the impactful organization it is today, and I’m grateful they will continue to work alongside me as we embrace this exciting new chapter.

Our recent in-person Board Meeting in Dublin left me inspired and excited by the momentum we’ve built. With a newly expanded board and new and important working partnerships —for example, with global organizations such as the World Health Organization—we are well-positioned to tackle the challenges ahead. This is a moment of opportunity, and we remain steadfast in our commitment: No Woman Left Behind.

From Evidence to Action: A Turning Point

Our 2023–2028 Strategy, From Evidence to Action: Making Ovarian Cancer a Global Priority, serves as a bold roadmap for achieving profound and equitable change. At its core is our mission to improve survival and quality of life for everyone impacted by ovarian cancer through advocacy, awareness, and evidence-driven initiatives. Our vision is simple yet transformative: a world where every woman, no matter where she lives, has access to the best care and the best chance of survival.

This vision is backed by a compelling moral and economic case for action. Studies like the Socioeconomic Burden of Ovarian Cancer in 11 Countries illustrate the immense financial and societal impact of this disease, providing critical data to inform advocacy and policy change. Similarly, the Every Woman Study™: Low- and Middle-Income Edition, for which I had the privilege of serving as Co-Chair of the Oversight Committee, highlights the disparities in care and outcomes experienced by women in underserved regions, amplifying their voices and identifying solutions to address these inequities.

I’m especially looking forward to the public release of the results of both studies in the first half of 2025. These findings will be a pivotal moment for the global ovarian cancer community, providing actionable insights to drive progress and deepen the understanding of the lived experiences of women affected by this disease.

Groundbreaking Collaboration and Ambition

The Coalition’s strength lies in its partnerships and through these we are genuinely advancing a global movement.

This ambition fuels every aspect of our work. From raising awareness to advocating for policy change and empowering advocacy networks, the Coalition is turning evidence into action to ensure our impact is felt worldwide.

A Personal Commitment

For me, this work has always been deeply personal. My focus has always been the women behind the disease, their families, and their unique stories. That commitment remains at the core of everything we do.

As we move forward, I’m excited to build on our achievements, tackle the challenges ahead, and continue delivering on our promise to ensure no woman is left behind. Together, we will create a future filled with hope, progress, and action—one step at a time.

Robin Cohen

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.