Ovarian Cancer: Voices of Hope and Challenge


Our recent World Ovarian Cancer Coalition Board of Directors meeting started in the usual way, with a short video from someone with personal experience of ovarian cancer.

Lucía, from Guatemala, is a beautiful, bright, recently married, young mother living with ovarian cancer that has now spread. She spoke clearly and eloquently about not knowing even one other person like herself with the disease, and how this lack of access to a support network outside of her immediate family contributes to a lonely and isolating experience.

In December, Charo, a passionate advocate from ASACO in Spain, told us about the challenge of ensuring women diagnosed with ovarian cancer get access to treatment at specialist centres where there are teams of professionals with specific training and experience dealing with the disease – specialist care that is proven to improve outcomes.

She also shared her anguish about the women she has met who have lost their fertility to ovarian cancer, only to face further heartbreak when denied adoption opportunities because of their cancer history. And at another meeting last year, an ovarian cancer survivor from Nigeria told us about her struggle to get a diagnosis and then to find even basic information about the side-effects of her treatment. She now works with the advocacy group Project PINK BLUE to raise awareness of ovarian cancer and support others who are living with cancer.

We call these personal stories Mission Moments. While members of our Board all have strong personal or professional connections to ovarian cancer, these Moments ground us in our mission and remind us of the urgency of achieving our vision of a world where everyone at risk of, or living with, ovarian cancer has the best chance of survival and best quality of life possible – wherever they may live.

When I saw the recently updated Globocan projections for ovarian cancer, my thoughts immediately turned to the women behind the numbers. Hundreds of thousands of women like Lucía, the women that Charo advocates for in Spain – and the women I meet daily as Chief Executive of Target Ovarian Cancer in the UK. Women who deserve so much better.

These new Globocan figures paint a stark picture of a global escalation of annual ovarian cancer cases and deaths that is even higher than the previous projections. Shockingly, Incidence is set to rise by more than 55% and deaths are forecast to jump by nearly 70% by 2050.

Despite advances in treatment, ovarian cancer remains the most challenging of women’s cancers. Survival rates are low – under 50% in higher income countries – and much lower in less developed countries and regions where sadly the burden of the disease is disproportionately higher.

With no screening test for ovarian cancer, it is often diagnosed at later stages when it is more difficult to treat. Even in countries like the UK, women face significant hurdles. For example, results from a National Ovarian Cancer Audit Feasibility Pilot (OCAFP) show that, in England, approximately 1 in 4 women with advanced stage ovarian cancer do not receive any anti-cancer treatment and only 51% receive both surgery and chemotherapy.

As the only global advocacy organisation focused on ovarian cancer, the World Ovarian Cancer Coalition is committed to making a difference, driving profound and equitable change for all those impacted by the disease through partnerships, evidence, advocacy, and awareness.

Our new 5-year Strategy, From Evidence to Action, sets out a clear roadmap with five strategic goals at its heart. Prevention, access to rapid diagnosis and best treatments, awareness and health literacy and data and evidence, all underpin our call to action to have ovarian cancer recognised as a global health priority and included in global women’s cancer initiatives like the global cervical cancer elimination strategy and the Global Breast Cancer Initiative.

Being Chair of the Board of the of the World Ovarian Cancer Coalition is a huge responsibility but also a great privilege. I believe that the work of the Board, our Coalition, and our 200 advocacy partner organisations remains as relevant as ever, more so in light of these recent projections.

In 2024, the Coalition will be releasing results from our groundbreaking Ovarian Cancer Cost-of-Illness Study and Every Woman Study™: Low- and Middle-Income Edition. Our World Ovarian Cancer Day campaign is entering its 13th year, and we are forging ahead with new partnerships and initiatives to help achieve our vision.

We do not underestimate the challenge we face. But we also know that there are people out there with the experience, vision, and commitment who can help make a difference.

If you think this might be you, l invite you find out more about the Coalition and our plans to recruit up to three members to our Board of Directors so that No Woman is Left Behind.


Annwen Jones OBE
Board Chair, World Ovarian Cancer Coalition


Reflections on 2023 and the year ahead from our Chair


As organisations and individuals we’ve faced considerable challenges over the past few years. Yet, as we approach the final days of 2023, I find myself deeply thankful for the resilience and commitment shown by my colleagues worldwide. Despite ongoing difficulties such as the escalating cost of living, global conflicts, and the impacts of climate change, our ovarian cancer community remains resolute in ensuring that everyone at risk of, or diagnosed with, ovarian cancer has the best chance of survival and best quality of life possible, no matter where they live.

Following two years of hard work, reflection, and consultation, we unveiled our new 5-year Coalition Strategy: “From Evidence to Action” in November. This Strategy revolves around four objectives that we believe hold the key to achieving our mission to drive profound and equitable change for all those impacted by this disease through partnerships, evidence, advocacy, and awareness. The objectives centre on prevention, awareness and health literacy, access to swift diagnosis and optimal treatments, and data and evidence.

Successful implementation of this Strategy will call for strong partnerships and collaborations. Our aim is to bolster grassroots movements, raise awareness, and advocate on local, national, and international platforms, with a laser-focus on ovarian cancer finally being acknowledged as a global health priority. For more details on this Strategy you can find it [here].

For me, our strategic partnership with the International Gynecologic Cancer Society (IGCS) and our joint work on the Every Woman Study™: Low- and Middle-Income Edition is a powerful case study on the value of bringing patient and clinician voices together. It was a privilege to be part of a session on the Study at the IGCS Annual Global Meeting in Seoul last month. Engaging with IGCS, and clinical leads involved in the Study from 11 of the 24 countries involved, was invigorating and exciting. It emphasised that while we’re still awaiting the final data, we are already glimpsing substantial potential for change through collaboration and partnerships.

I am also excited by the progress we have made this year on our Ovarian Cancer Cost-of-Illness Study. When the data is complete, for the first time we will be able to quantify the impact of this disease not only on healthcare systems but also on the broader economy, when women leave the workplace or reduce work commitments while navigating their diagnosis. Our two Studies together will provide robust qualitative and quantitative evidence to guide our actions in the coming years.

I cannot forget this year’s World Ovarian Cancer Day results which were breathtaking. Your enthusiasm and hard work for this campaign helped us reach over 200 million people with awareness messaging around the world – certainly a mention by Oscar-winning actress Angelina Jolie also gave the campaign a boost! More countries are getting increasingly involved and for 2024 we will continue to add to our database of translations so we can reach even more people – not just on May 8, but year-round.

As always, all of our work over the last year has been informed by our partner advocacy organisations around the world and our wider network of stakeholders, including clinicians and patient advocates. I am excited that we will be able to provide all our stakeholders with concrete evidence that will help them advocate for actions at country level.

Realising our objectives hinges on strengthening existing partnerships and fostering new ones. In times of uncertainty, the value of collaboration and partnerships cannot be overstated. From working with partner organisations like STAAR Ovarian Cancer Foundation and Cure Our Ovarian Cancer, to building on our Ambassador Programme that already has a bestselling author and two African First-Ladies, we know that we can be more impactful by working together towards our common goals. I so look forward to what 2024 will bring.

As I close, my thoughts turn to the members of our World Ovarian Cancer Coalition Board of Directors. Their commitment to the Coalition and achieving our vision has never wavered. I wish to extend my deepest gratitude to Robin Cohen, Jane Hill, Tammy Brown, Elisabeth Baugh, Eva Schumacher-Wulf, Runcie CW Chidebe, and Rafe Sadnan Adel. It is my great privilege to be a part of this Board. I look forward to the coming year as we continue our work to achieve profound and equitable change for everyone impacted by this disease.

The Coalition’s dedication to our partners is stronger than ever. Together, we are confident in our ability to make strides towards ensuring No Woman is Left Behind. Wishing you all the very best for the holiday season and a peaceful New Year.

Annwen Jones OBE, Chair of the Board of Directors.



Improving 2SLGBTIQ+/LGBTIQ+ Inclusivity in Ovarian Cancer Care


Clara MacKay, CEO

In 2021, when the World Ovarian Cancer Coalition surveyed our advocacy partner organizations about what topics they would like to see on the agenda for our inaugural Partner Meeting, 2SLGBTIQA+/LGBTIQA+ inclusiveness was a frontrunner topic.

Many of the organizations that we work with do outstanding work in this area. However, and encouragingly so, there is increased recognition across the Coalition and within the global cancer community of the need to address the lack of diversity of data within cancer science. As well, there is a growing awareness of the need for relevant information, services and support to improve the experience of cancer care for those from the 2SLGBTIQA+/LGBTIQA+ community.

From an ovarian cancer awareness perspective, there are specific messages for the 2SLGBTIQA+/LGBTIQA+ community that need to be communicated. This includes busting myths, like the misconception that having your ovaries removed eliminates the risk of developing ovarian cancer. In addition, within the lesbian and bisexual communities, for example, fewer people take oral contraceptives, give birth, and breastfeed compared to heterosexual women – which are all factors that reduce the risk of developing ovarian cancer.

We also know that issues related to gender dysphoria, discrimination and adverse experiences with healthcare can impact a person’s willingness to trust or access health services.

Combating Barriers Facing 2SLGBTIQA+/LGBTIQA+ Individuals

Our own work in this area started with a decision to run a 2SLGBTIQA+/LGBTIQA+ focused awareness campaign during June 2022 under the banner of No Person Left Behind.

Our first step was to draw on the expertise within our partner organizations and stakeholders from the wider 2SLGBTIQA+/LGBTIQA+community. Noteworthy input came from Stewart O’Callaghan, founder of Live Through This; one of the Coalition’s partner organizations, Ovacome; and Tristan Bilash, a clinical oncology social worker, transgender man, and ovarian cancer survivor.

In 2022, I also participated in a 2SLGBTIQA+/LGBTIQA+ focus group that one of our corporate partners, Teckro, sponsored, hosted by the non-profit organization CISCRP. Here, I listened to members of the 2SLGBTIQA+/LGBTIQA+ community share their experiences with healthcare and clinical trials, and the steps that could be taken to improve these interactions.

The combination of all of these discussions has flagged-up some significant challenges that will take time to address, including:

  • Societal biases against the 2SLGBTIQA+/LGBTIQA+ community
  • Mistrust by 2SLGBTIQA+/LGBTIQA+ people towards healthcare providers and systems
  • Lack of awareness of ovarian cancer and the specific risks for those who are part of the 2SLGBTIQA+/LGBTIQA+ community
  • The shocking lack of diversity that exists within cancer research, including clinical trials
  • We need to work much, much harder to combat these barriers.

But I was also struck by some of the very simple and foundational ways we can make health services more welcoming and accessible to the 2SLGBTIQA+/LGBTIQA+ community. We need to start with basic healthcare and then expand awareness and accessibility of clinical trials for this community.

Images and Words Matter

When it comes to something as personal as healthcare, people want to see themselves reflected back when they approach awareness information or a healthcare provider who will be privy to the most personal aspects of their lives.

Language is also key. Almost everyone we’ve listened to has shared a personal experience of completing medical forms that only offer male or female as gender options. They are not asked about preferred pronouns, or healthcare providers – either intentionally or unintentionally – use the patient’s “dead name.” (Deadnaming is the act of referring to a transgender or non-binary person by a name they used prior to transitioning, such as their birth name.)

Using the correct names and pronouns are meaningful ways to show respect, as they are wholly entwined with the concept of personal identity. Breaking the ice on this front can be as simple as health professionals sharing their own pronouns.

On a systemic level, it is also important to expand understanding that every person is a unique individual and should be approached as such. One of the most powerful stories we’ve heard is from from Tristan, a transgender man who is also an advanced ovarian cancer survivor. Tristan’s follow-up CA125 test was cancelled because the laboratory software restricted CA125 tests to female patients only. Tristan’s health card, and subsequent lab requisitions, reflect he is legally male so his test was automatically filtered out. Thankfully, this was since corrected and Tristan was able to access this test, but it is an indication of the barriers that can arise when approaching health care.

Everyone Deserves Best Quality of Life and
Chance of Survival

Many starting the journey into 2SLGBTIQA+/LGBTIQA+ inclusivity worry about getting terms wrong or unintentionally offending people. One message that has come through quite clearly in our discussions is that mistakes will happen, and no one will get it right 100% of the time.

What is more important is that the conversations take place – and that they happen in good faith. Sincerity of purpose, genuine and honest dialogue, and being transparent about your limitations in knowledge and experience are the most important steps any person, organization, or company can take as they move towards building trust and a more inclusive future.

We can never truly know what it is like to be in someone else’s shoes, whether they be of a different economic status, live in another country, or identify a different way. As a Coalition, we acknowledge this and celebrate the diversity of our global community. And we are committed to our belief that every person with ovarian cancer deserves the best quality of life and best chance of survival – no matter where they live, who they love, or how they identify.

This blog was originally written for, and posted by, Teckro, one of the Coalition’s corporate partners. We have made minor updates to the text for 2023, including the acronyms. 


Unicorns do exist


By: Tristan Bilash (he/him/human)

The first time I was called a unicorn, was in the early 2000’s during my first semester of university. A fellow classmate, who arrived in Canada just 24 hours before, promptly asked me out on a date after I held a door open for him. He was serious. I was serious as well when I respectfully declined his invitation and informed him that I only dated women. (Spoiler alert: I presented as a woman back then.) He declared there was no such thing as a lesbian or a gay woman and explained in his home country, only men could be homosexual, and if they were, they would be jailed, or worse. As he walked away, he scoffed, “You are a unicorn – you don’t exist.”

I can’t say that I was devastated by this declaration. To a degree, I was already tempered by repeatedly hearing people like me were delusional about our sexual orientation and gender.

During this same time, my main concern was fielding multiple medical appointments to get to the root of symptoms I had been struggling with since my early teen years. The answers I received were little more than the familiar suggestions to add fibre to my diet or that I needed anti-depressants.

By my late 20s, I was exhausted from years of medical tests and symptoms written off as irritable bowel syndrome or depression. After an extremely gruelling experience, where abdominal pain took me to the floor of a bathroom for hours, I asked my family physician if I might have cancer of some type. Honestly, I didn’t know much about cancer at the time. While the physician shook his head several times and informed me it was highly unlikely I had cancer, as I was “too young”, before I left his office I convinced him to arrange a colonoscopy and pelvic ultrasound for peace of mind.

The very last time I met with that physician was post-surgery (hysterectomy, double oophorectomy, debulking of tumour) for stage IIIC low grade serous ovarian cancer. He clearly hadn’t read my chart before meeting with me that day as the shock on his face said it all when I told him about my diagnosis. I was 30 years old with advanced ovarian cancer – again somewhat of a unicorn.

Fast forward almost 20 years and things have considerably changed. If my headshot for this blog doesn’t give away the reveal: I am a man of trans experience. The removal of my cancer-laden gynecological parts did not contribute to me being trans as I knew that I was a boy when I was four years old. As it turned out, my ovarian cancer surgery greatly reduced the amount of gender dysphoria and related depression I struggled with for so long.

In addition to being transgender and an ovarian cancer survivor, I’ve worked in oncology almost 15 years. These three facets of my being intersect on so many levels, and sometimes it’s overwhelming. Before my gender affirming medical transition, I was more forthcoming with clients/patients about my ovarian cancer experience if I assessed the self-disclosure was helpful to build rapport. I’m more guarded now as sharing my diagnosis inevitably means further conversation about my gender. I never used to have to think about my personal safety when sharing about my ovarian cancer – now it’s often top of mind.

I am keenly aware that my physical appearance would have allowed me to melt easily into the background and live a quieter life. This “passing privilege”, as some call it, means that unless I told you up front, you would be hard pressed to know I was a transgender man. So why give up anonymity and perceived safety to be public about being a transgender man and ovarian cancer survivor? Because of Robert Eads.

Robert is often featured in my presentations and writings. His heartbreaking story about struggling to find someone willing to treat his ovarian cancer because he was transgender is reflected in the 2001 award-winning documentary Southern Comfort. I won’t ever forget the catharsis I felt as I watched the movie for the first time. I was equally relieved, humbled, and devastated. Relieved I finally found someone like me: a transgender man with advanced ovarian cancer. Humbled to be privy to glimpses of the last year of Robert’s life. Devastated because Robert’s emotional and physical suffering could have been prevented.

And a part of me was shattered because I felt I was a lone unicorn again. I continued to search for programs and supports for 2SLGBTQIA+ [1] cancer patients often to no avail. Those I could find were usually geared towards gay men with prostate cancer or lesbians with breast cancer – reflecting the available research at the time. I had to believe I wasn’t the only transgender man with ovarian cancer in the world – but it honestly seemed most times that it was just Robert and I.

In 2020, I was invited to provide a keynote speech for the Canadian Association of Psychosocial Oncology (CAPO)’s national conference. I had presented to groups before, but this was the furthest reaching audience by far. I knew I would have a lot to share that those of us who work in oncology hadn’t thought about before. Given the warm gracious response and feedback, I was right. From that moment, I knew I would do everything I could to deepen the anchor Robert Eads’ story was for me for so many years. For him and so many others, I would be as visible as possible to improve transgender cancer care experiences moving forward.

March 31st is the International Transgender Day of Visibility – a day of celebration and awareness. Today I am visible for those who can’t be. They can’t be because either they aren’t ready or don’t want to be.  They can’t be because they live somewhere they will be harmed, or lose their job, their home, or even their life. And today, I am also visible on behalf of transgender cancer patients, and men with gynecological cancers especially.

Today, I am also very mindful what my visibility means in ovarian cancer spaces, “women’s” healthcare offices, and gynecological conferences. I hope it means I help people think of things they haven’t thought of before, and they take action to transform their approaches to caring for their transgender clients/patients. Ultimately, helping improve cancer research and care for people like me helps improve care for everyone.

The irony is not lost on me that while I’m very private about my cancer and gender history closer to home, I’m also an international speaker and transgender cancer care advocate. But I can’t help but stand out and stand up where I can in the hopes of getting that much closer to #NoPersonLeftBehind. After all, standing out and being noticed is exactly what unicorns do best.

Tristan Bilash (he/him/human) is a registered social worker, community partner with QueeringCancer.ca, 2SLGBTQIA+ representative for the CAPO’s Advocacy Committee, and a friend and advisor to the World Ovarian Cancer Coalition. He lives in Canada.

[1] Two-Spirit*, Lesbian, Gay, Bisexual, Transgender (including non-binary, agender, genderfluid), Queer, Intersex. Asexual, other included identities. Two spirit is used among Indigenous peoples around the world but heard more in North America.  According to the Public Service Alliance of Canada with 2S at the beginning, this acronym further acknowledges the fact that Indigenous peoples were the first to build communities that honoured sexual and gender diversity in this land.





Closing the Care Gap


The Heart of Cancer Advocacy

By: Frances Reid, Every Woman Study™ Lead & Programme Director

Closing the care gap is, or should be, at the heart of cancer advocacy, no matter the setting or type of cancer. There is always the opportunity to improve, to drive progress forward, ensuring people get the care they need and deserve. At the World Ovarian Cancer Coalition, we firmly believe that it is vital to find where the care gaps are, and to find opportunities that are revealed during that search.

This time last year as World Cancer Day was adopting this theme for the first time, we were getting ready to launch the Every Woman Study™, Low- and Middle-Income Edition with our Strategic Advocacy Partners, the International Gynecologic Cancer Society.  The aim of this wide ranging study is to identify the challenges and opportunities to improve survival and quality of life for women with ovarian cancer in these settings.  Global incidence is set to increase 40% by 2040, and mortality by 50%, and developing countries will see the greatest increases.  We felt it was vital to gather timely data on women’s experiences, so we can articulate the issues and opportunities at hand and unite local communities behind prioritised action, backed by evidence.

Locations for the Every Woman Study™ LMIC Edition

One year later, data collection, which takes place via hospital clinics in our 24 Low- and Middle-Income countries (LMICs) in 31 languages, is underway.  Over 400 responses from our target of 2,000 women have already been recorded, with analysis of our Country Lead Clinician interviews being prepared for journal submissions.  The overwhelming energy and collaborative approach from our partners on the ground show they agree that documenting the experiences of women with ovarian cancer in their country is the first step to improving care.  Whilst we know that a significant number of women never get a diagnosis or sadly they disappear after diagnosis, the demographic factors we are collecting are revealing diverse communities. So far:

  • 12.8% travel more than 5 hours to get to the hospital, for 3% it takes more than 24 hours
  • For 15.8% of women, they either have no formal education, or were only educated to primary school level
  • 25.3% report their household income is below average for their country

It is evident that there are significant gaps in the care provision between lower and higher income settings, but even early on, it is interesting to see how this varies not only country by country but also within countries, especially between rural and urban settings. Levels of health literacy and their role in society also impact sharply on women’s ability to access and afford care. Cruelly, it is already clear that standard of care is out of reach for a significant number of women.  Above and beyond ovarian cancer specifically, we are seeing that there is still an enormous amount of work to be done by the global cancer community to improve health literacy, improve awareness of the importance and value of medical treatment, and ensure women are not disadvantaged.

Beyond these generic themes the call to action in each country will differ, whether it is to improve access to affordable diagnostics, or tackle affordability and accessibility of treatments on the WHO Essential Medicines List, or to ensure sustainability of supply and quality of treatments.  But the foundation for any change will be rooted in better data to support cancer control planning and action in national communities, and for the focus to turn towards what can be done for non-communicable diseases like cancer.  It is our aim that each country will not only have a National Cancer Control Plan, but will have one one that mentions ovarian cancer.

70% of women diagnosed with ovarian cancer live in LMICs where they have the least access to medicines

70% of women in the world who have ovarian cancer live in LMIC, therefore tackling the inequities that exist in ovarian and other cancers is an important priority.  We all have a role as a wider cancer community to step up and work on these issues.  The things we learn along the way will also likely impact on care in higher-income countries, as we find out more about the impact of geography, socio-economic factors, and levels of health literacy on patients’ ability to access good quality and affordable care. 

As part of our preliminary work for the study, we are updating the World Ovarian Cancer Coalition Atlas to launch March 2023, documenting the current evidence surrounding incidence, mortality, survival, treatments, risk factors and access to care. What is encouraging to note for this third edition, is the beginning of a new direction in the literature, one that at last is beginning to think more carefully about inequity, and the importance of having localised relevant data to guide planning, treatment and support.

We hope by this time next year, even more groups will be considering these issues, and, of course, data from our own Study, which closes in June 2023, will be beginning to spotlight and focus on exactly where and how those gaps can be closed. 

Frances Reid, Programme Director and Every Woman Study™ Lead World Ovarian Cancer Coalition


Reflections on 2022 from our Chair, Annwen Jones OBE


As this year draws to a close, I reflect on 2022 with much gratitude and look ahead to 2023 with eager anticipation.

My first year as Chair of the World Ovarian Cancer Coalition Board has been filled with many highs, and I am hugely in awe of the outstanding work of the global ovarian cancer community. As Chief Executive of Target Ovarian Cancer, I know how tough these last few years have been, fraught with challenges brought on by the COVID-19 pandemic, and now we face further uncertainty with the cost of living increasing globally against a backdrop of political instability. Because of this I am enormously proud to be part of a global movement that remains committed to improving survival and quality of life for every woman at risk of or living with an ovarian cancer diagnosis.

I am amazed by the work being done in the face of – and in spite of – these challenges, that I am left in no doubt we will indeed change the future of ovarian cancer.

It has been a busy year for the Coalition as well. Our record-breaking World Ovarian Cancer Day campaign in May transitioned into our first-ever Pride Month campaign, where we addressed the particular challenges and risks of the often-overlooked LGBTQ2+ community.

Our strategic partnership with the International Gynecologic Cancer Society (IGCS) continues to bear fruit, as our much anticipated Every Woman Study™: Low- and Middle-Income Edition is now out in the field, with data starting to come in from 24 countries.

It was our profound joy to be able to meet in person as a Board as we gathered for an intensive three-day summit to map out our strategy for the next 5-years. We have some exciting plans in the works, as we sharpen our focus and adjust our mission and vision to reflect our maturing organisation.

Heading into 2023, I renew our pledge to provide global leadership and insight so we can make ovarian cancer a global priority. Supporting our stellar partner organisations will remain a key pillar of our work and empowering them with new pieces of strategic evidence so at local, national, and international levels we can, individually and as a community, advocate for all women no matter where they live.

And by continuing to develop and build collaborations and partnerships, we are confident we WILL get to “No Woman Left Behind.”

On behalf of the Coalition, thank you and we wish you the most peaceful of holidays and a safe and healthy New Year.

Annwen Jones OBE

Chair, World Ovarian Cancer Coalition


We need to take urgent action now – A Blog from our CEO


Between now and 2040 we will lose over four million women worldwide to ovarian cancer. This is the hard reality of the future of this lethal disease.

Rather, that is unless we take urgent action now.

Current estimates state that each year over 300,000 women globally are diagnosed with ovarian cancer. That figure is set to rise significantly – by almost 50% over the next twenty years to almost half a million.  As it stands right now, well over half will die within five years of their diagnosis making this disease the one of the deadliest of all women’s cancers.

These are shocking statistics, but they don’t really quantify the true tragedy of this loss.  These are not only our mothers, sisters, cousins, and friends, but they are also business owners, athletes, scientists, teachers, doctors, and more. In just 18 years four million women and the vital contributions they make to society will be gone.

Distressingly, we are also increasingly aware that for many women geographic, financial, and social circumstances stand between them and access to best possible care.

In a recent exercise, the World Ovarian Cancer Coalition looked at access to ovarian cancer treatment across thirteen countries, from low- to high-income. This review of availability, accessibility, and affordability covered a core set of standard ovarian cancer treatments. With the exception of PARP inhibitors, the recent, break-through treatment for some women with a genetic mutation or tumour characteristics all of the other treatments included are currently on the WHO’s Essential Medicines List (EML).

Unsurprisingly PARP inhibitors were rarely available to women in lower income countries. Indeed, it was found that even some high-income countries have limited access to this treatment. What was shocking, though, was that women in lower income countries do not even have routine access to the most basic of treatments that have been in use for decades.

However, the review’s most concerning conclusion was that the women least able to afford treatment were the ones most likely to have to pay out-of-pocket. Women in higher-income countries are more likely to have access to state or private coverage, women in low- and middle-income settings are more likely to pay for more than half of the core treatments themselves – even if they are approved for use and available in their country.  It is worth noting that 70% of the woman who are diagnosed with ovarian cancer each year live in lower income countries.

More generally, low global awareness of the disease, on the part of health care professionals as well as women, hampers a more rapid diagnosis – with delays in initial investigations, testing, referrals to specialist surgery and care all standing in the way of potentially better outcomes.

Even where there is awareness, healthcare systems frequently lack the resources and expertise to help women. Many lower income countries also suffer from a pronounced lack of specialist cancer physicians and support services, all hindering women’s chance of receiving the best possible care.

On a positive note, there is actually a lot to feel excited about in relation to new developments in the understanding of ovarian cancer and treating it more effectively. But this will only make a difference if we take meaningful steps today on behalf of the millions of women we stand to lose in the very near future. Our Global Ovarian Cancer Charter sets out the following six key areas that require action.

  • Make ovarian cancer a global priority: including examining guidelines on the diagnosis and care for women; investing and better planning at local, national, and international levels.
  • Rapid diagnosis: increase awareness among individuals and across healthcare systems so that women have the best chance of being diagnosed without delay.
  • Commitment to best possible care: tangible investments in ovarian cancer care including training, hiring, and retaining ovarian cancer healthcare professionals and specialists as well as financial support to those without means to access treatments.
  • Data improvement: current ovarian cancer data fluctuates widely and excludes many. It is vital we improve and increase the quality, quantity, and diversity of data on this disease so we can determine and develop evidence-based strategies for those with ovarian cancer so they have the chance at the best possible outcomes – no matter where they live.
  • Support and inform: those diagnosed with ovarian cancer must have access to appropriate information and support in their own language and their mental and physical well-being should be considered in equal measure.

Women deserve better. The time for us to act is now to close the care gap. Whoever and wherever you are, please join us  so no woman is left behind.

Clara MacKay
World Ovarian Cancer Coalition


A message from our new Chair



This time of year is special for many of us as it embodies the importance of celebrating what is, reflecting on what was, and looking ahead to what can be.

As I take up my new role as Chair of World Ovarian Cancer Coalition Board, I am especially grateful to be part of this outstanding community of global advocates working tirelessly to improve survival and quality of life for every woman diagnosed with ovarian cancer – wherever she may live.

I am also proud of what this Coalition has achieved in the five short years since our inception. From a humble base of 30 supporting partner organizations at the outset, we now work with almost 200 patient advocacy organizations around the world.

World Ovarian Cancer Day, launched in 2013 and the seed from which the Coalition grew, is now firmly established as the flagship annual global ovarian cancer awareness raising event, having reached well over 18 million people last year alone.

The Every Woman Study™️, launched in 2018, has provided us with enormous insight, backed-up by high quality evidence, about the experiences of women living with a diagnosis of ovarian cancer.  Through this work we have been able to develop a rallying call for action in the form of our Global Ovarian Cancer Charter.

I am also proud of the major strategic partnerships we have developed along the way; including with the International Gynecologic Cancer Society (IGCS), with whom we are partnering on the Every Woman Study™️: Low- and Middle-Income Edition that will be undertaken next year in close to 30 countries. These are big achievements that belong to us all.

As we face the New Year, I am ever mindful that despite our accomplishments, there is still so much more work to be done. Ovarian cancer incidence and mortality are on course to continue to rise, the gap between high- and low-resource settings is ever widening, and although we welcome the most recent advances, there are still many women with extremely limited treatment options.

As Chair, I am committed to ensuring that the Coalition provides global leadership and insight and that no woman with ovarian cancer is left behind.  We will continue to support our outstanding partner organizations so that they can be as impactful as possible within their own settings and will foster and support the development of advocacy organizations where they currently do not exist. Through the Every Woman Study™️: Low- and Middle-Income Edition and our ambitious Ovarian Cancer Futures project to be launched in 2022, we will provide even more strategic evidence to back our call for transformational change in ovarian cancer outcomes and the actions required to achieve this. Most importantly, we will work with collaborators and partners who share our vision and passion and who also believe that ovarian cancer must be recognised as a global priority with a global action plan put in place.

I am hugely indebted to my fellow Board members, including our new Vice-Chairs, Robin Cohen, CEO of the Sandy Rollman Ovarian Cancer Foundation and Jane Hill, CEO of Ovarian Cancer Australia.  Our most recent appointments to the Board, Runcie C.W. Chidebe from Nigeria and Rafe Sadnan Adel from Bangladesh bring to the table a genuinely global perspective and help round out our expanded and diversified Board.

We truly owe a debt of gratitude to our outgoing Chair, Elisabeth Baugh, for her leadership over these past five years. It has been an honour and privilege to have worked alongside her.

On behalf of the World Ovarian Cancer Coalition thank you for everything you do and your unwavering commitment to all those affected by ovarian cancer.  We wish you a prosperous and safe 2022.

Annwen Jones OBE
Chair, World Ovarian Cancer Coalition