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.

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 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. 

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

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
CEO
World Ovarian Cancer Coalition

 

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