Recent Developments

World Ovarian Cancer Coalition Calls For No Woman To Be Left Behind On 11th World Ovarian Cancer Day

FOR IMMEDIATE RELEASE

Toronto, Canada – May 3, 2023 – May 8, 2023, marks the 11^th World Ovarian Cancer Day, a day where individuals and organizations from around the world come together in solidarity to raise awareness about ovarian cancer and advocate for better care and treatment for those affected by the disease.

Established in 2013 by a group of leaders from ovarian cancer advocacy organizations around the world, World Ovarian Cancer Day is the flagship awareness-raising initiative of the World Ovarian Cancer Coalition. With close to 200 organizations supporting the cause, this day has become a crucial date in the calendar for those fighting against ovarian cancer.

In 2022, the reach of World Ovarian Cancer Day was well over 100 million globally, with close to 28 million reached through the Coalition’s social media channels alone. With the help of partner organizations and sponsors, the World Ovarian Cancer Coalition aims to raise even greater awareness this year.

This year’s campaign theme is “No Woman Left Behind,” and the Coalition has an updated Get Involved Guide to help individuals and organizations participate in the day. The guide includes facts and figures, links to social media artwork, posters, and Zoom/virtual meeting backgrounds. Additionally, the DIY post/poster generator provides a quick and easy way for individuals to get involved by providing suggested text for their posts.

Ovarian cancer is a serious disease that affects millions of women around the world. If nothing is done, it is projected that by 2040 over four million women will be lost to ovarian cancer. However results from their 2018 Every Woman Study™ have shown that 9 out of 10 women experience symptoms prior to their diagnosis, and 69% of women have little to no awareness of ovarian cancer prior to their diagnosis. The more women know about ovarian cancer, the more quickly they can seek medical attention, leading to a better chance of starting and tolerating treatment.

The World Ovarian Cancer Coalition is calling on the global community to come together on May 8th and help raise awareness about ovarian cancer. With support, a world where no woman is left behind in the fight against ovarian cancer is within reach.

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About the World Ovarian Cancer Coalition

Formally established in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.

The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018. The Coalition launched a Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in 24 countries.. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out early 2024.

Media Contact:
Phaedra Charlton
Director of Marketing and Communications
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

Global Ambassadors

Dorothy Nyong’o, Zainab Shinkafi-Bagudu, and Deborah Harkness Join World Ovarian Cancer Coalition as First Global Ambassadors

African first ladies and esteemed historian partner to raise awareness of ovarian cancer and help improve access to better quality, affordable care

Ambassador Program launches ahead of World Ovarian Cancer Day on May 8

Toronto, Canada – April 25, 2023 – The World Ovarian Cancer Coalition (Coalition) today announced the organization’s first global Ambassadors to help close gaps in ovarian cancer outcomes: Dorothy Nyong’o, First Lady of Kisumu County, Kenya; Zainab Shinkafi-Bagudu, M.D., First Lady of Kebbi State, Nigeria; and Deborah Harkness, Ph.D., U.S.- and U.K.- based historian and New York Times bestselling author. In their roles as Ambassadors, Mrs. Nyong’o, Dr. Shinkafi-Bagudu, and Dr. Harkness will support the Coalition in its efforts to raise awareness of ovarian cancer, tackle low health literacy, and empower women across the world to take action to improve equitable access to high-quality, affordable care for ovarian cancer.

If the status quo is maintained, by 2040 an estimated 4 million women will be lost to ovarian cancer. The majority of women (70%)[i] with the disease live in low- and middle-income countries where access to basic medical care is severely limited by the lack of effective infrastructure, limited resources, geographic and cultural barriers. While those in high-income countries often fare better overall, women often experience delays in diagnosis and there is vast variation in care resulting in inconsistent availability, access to, and usage of genetic testing, diagnostics, and the latest treatment options.

“The need to make ovarian cancer a global priority is as urgent as ever. The gap between those who can access the best possible care and those who cannot is continuing to grow and will result in the tragic loss of millions more lives if we don’t take action now,” said Clara MacKay, CEO of the World Ovarian Cancer Coalition. “Mrs. Nyong’o, Dr. Shinkafi-Bagudu, and Dr. Harkness are inspirational, passionate leaders who share our vision of a world where every woman with ovarian cancer has the best chance of survival and best quality of life possible wherever she may live. We are proud to partner with them to lead this call for action, inform the debate, and help educate women around the world about ovarian cancer.”

The World Ovarian Cancer Coalition Ambassadors are:

Her Excellency Mrs. Dorothy Nyong’o, Managing Trustee of Africa Cancer Foundation, First Lady of Kisumu County, and Director of 7th Sense Communications Limited. She holds an Executive M.Sc. in Organisational Development from the United States International University (Nairobi), a Postgraduate Diploma in Mass Communications, and a B.A. Hons in French and Political Science from the University of Nairobi.
Her Excellency Dr. Zainab Shinkafi-Bagudu, a Consultant Paediatrician and an advocate for women’s health. With a particular focus on cancer, she is often referred to as the mother of health in her native land. In her role as the First Lady of Kebbi State, Dr. Shinkafi-Bagudu works with the state ministries of health, education, and women affairs to implement programmes to sustainably improve menstrual hygiene, girl-child education, and economic empowerment of women, and put an end to gender-based violence.
Deborah Harkness, Ph.D., the New York Times and internationally bestselling author of the All Souls series and a professor of European History and the History of Science at the University of Southern California. Dr. Harkness is a well-regarded historian of science and medicine and the recipient of fellowships from the Guggenheim Foundation, the National Council of Learned Societies, the National Science Foundation, and the National Humanities Center. She holds a Ph.D. from the University of California, Davis, an M.A. from Northwestern University, and a B.A. from Mount Holyoke College, and studied at Oxford University.

The Ambassadors will be key to helping to further the Coalition’s mission to empower the global ovarian cancer community through collaboration, knowledge, and action. The launch of the Ambassador Program comes just ahead of World Ovarian Cancer Day, a flagship awareness-raising initiative in which approximately 200 organizations from around the world raise their voices in solidarity in the fight against ovarian cancer.

To learn more about the Coalition, please visit worldovariancancercoalition.org.

Quotes for Media

Her Excellency Mrs. Dorothy Nyong’o – “Sadly, there is a stigma around ovarian cancer for too many in the world, even in 2023, and that is compounded by many societal and economic barriers to health care, not just in my country, Kenya. As a founding trustee of Africa Cancer Foundation, I am excited to serve as an Ambassador so we can improve awareness and access for all women – no matter where they live.”

Her Excellency Dr. Zainab Shinkafi-Bagudu – “I believe that we must be our sisters’ keepers and that when we come together, great things can happen. Through my work at the Union for International Cancer Control, my own Medicaid Cancer Foundation and now as World Ovarian Cancer Coalition Ambassador, I hope to add to the global conversation in addressing the gaps in the continuum of care. Only through collaboration between advocates, policymakers, and private sector will we accelerate change.”

Deborah Harkness, Ph.D. – “While this is not a diagnosis anybody would choose, I am grateful to be here today as a survivor and World Ovarian Cancer Coalition Ambassador to raise awareness for this disease. If we do nothing to change the status quo, by 2040 over four million women worldwide will be lost to ovarian cancer. It is crucial that we be advocates for our health. I fully support the Coalition as they work to make ovarian cancer a global priority, but everyone at risk of developing this disease can also do their part by making awareness a priority for themselves and within their own networks. The more we work together, the closer we will get to #NoWomanLeftBehind.”

About the World Ovarian Cancer Coalition
Formally established in 2016, the World Ovarian Cancer Coalition is the onlyglobal not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.

Media Contact:
Phaedra Charlton
Director of Marketing and Communications
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

[i] Source: Globocan 2020.

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 31^st 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.

World Ovarian Cancer Coalition’s Updated Ovarian Cancer Atlas Highlights Urgent Need to Make the Disease a Global Priority

Progress on tests to detect ovarian cancer earlier stubbornly slow and globally major inequities are widening

Toronto, Canada, March 22, 2023 – In advance of leading global gynaecological oncology experts coming together this week at the annual Society of Gynecologic Oncology’s (SGO) meeting in Tampa, Florida, the World Ovarian Cancer Coalition has today released its World Ovarian Cancer Coalition Atlas 2023, a comprehensive literature review identifying the global trends in incidence, mortality, and survival of this disease which continues to have the highest mortality rate of all the female cancers. Whilst there have been an encouraging number of new studies on ovarian cancer in the years since the Coalition’s first edition of the Atlas, the need to make the disease a global priority is as urgent as ever.

Based on 2020 mortality rates, it is estimated that by 2040 over 4 million women will be lost to ovarian cancer. A population-wide screening programme remains a long-held but distant dream, and women across all economies face barriers to diagnosis and care, with many diagnosed so late that nothing can be done, if they are diagnosed at all. What comes through clearly in this latest edition of the Atlas is that without action, the gap between those who can access the best possible care and those who cannot will widen significantly.

While those with ovarian cancer in high-income countries fare better overall, there remain major variations across the continuum of care. Inconsistent availability and usage of genetic testing, diagnostics, and the latest options in treatment and specialist centres access mean that many women fall by the wayside – exposing not only geographical but racial divides between and within countries.

In low- and middle-income countries, where over 70% of women with the disease live, the picture is far bleaker, with cases set to rise at a disproportionate rate as those economies grow and develop, further entrenching disparities that already exist. Datasets that can inform cancer control plans are poor and incomplete. Health care systems are weakened by lack of human resource and basic infrastructure. For many women, the cost of their care falls to them and their families causing extreme financial toxicity, deterring many from seeking help to begin with. And geographic and cultural barriers can also hinder appropriate health seeking behaviours.

In order to better qualify and quantify the burden of the disease, the Coalition is undertaking two critical projects in 2023. The ongoing Every Woman Study™: Low- and Middle-Income Edition is being conducted in 24 countries with close to 2000 women expected to share their experiences of ovarian cancer. Conducted in partnership with the International Gynecologic Cancer Society (IGCS), this highly complex Study will, for the first time, give voice to women who have largely been left unheard.

Frances Reid, Director of Programmes and Every Woman Study™ Lead for the Coalition says, “It is encouraging to see an increasing focus on ovarian cancer in recent years, however given the enormous challenges facing women in lower-income countries, for many the latest developments are of little value, and progress overall is slower than it could be”. Tracey Adams, a leading gynaecologic oncologist in South Africa and Co-Chair of the Study remarks, “This version of the Every Woman Study™ will help us bring the reality of women in low- and middle-income countries into sharp relief so that we can not only qualify their experiences, but also shed light onto the key challenges and opportunities that will help the ovarian cancer community advocate for change – on a local, national, and international level.”

As a companion to the Every Woman Study™, the Coalition is also embarking on another critical piece of work, a Cost-of-Illness Study. In the hope of solidifying the case for urgent change, the Coalition will look at the economic and societal costs of ovarian cancer in 11 countries, representing high- to low-income settings. The Study will also shed light on the impact that positive changes to diagnosis and treatment of the disease could make. Attending this year’s SGO Conference, Clara MacKay, CEO of the Coalition says of this Study, “Combined with the patient experience evidence we are generating with the Every Woman Study™: Low- and Middle-Income Edition, it is our hope that these two Studies will help us identify concrete priorities for a global plan of action that will be endorsed by the international community. Ultimately, until we commit to making this disease a global priority, we are sadly facing a future where over 4 million women are lost to this disease, and where women across all economies face a chasm of disparities and poor outcomes.”

Both Studies are set to conclude this year, with initial results becoming public early in 2024.

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About the World Ovarian Cancer Coalition

Media Resources:

Media Contact:
Phaedra Charlton, Director of Marketing and Communications
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

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

Video Replay – Media Briefing, September 28, 2022

On September 28, 2022, the World Ovarian Cancer Coalition held a media breakfast briefing in New York City prior to the International Gynecologic Cancer Society Annual Meeting. Below is the replay from this event.

Click here for the electronic press kit.

World Ovarian Cancer Coalition to Unveil New Report that Highlights Gaps in Ovarian Cancer Care within Low- and Middle-Income Countries

Insights will outline challenges and opportunities to improve equitable access and affordability to essential medicines in ovarian cancer

Toronto, Canada, September 7, 2022 – Today, The World Ovarian Cancer Coalition (Coalition), announced that it will release findings from a new report titled, The Journey to More Equitable Ovarian Cancer Care, Access to Essential Medicines Roundtable Report, that identifies challenges and opportunities surrounding access and affordability of essential medicines in low-and-middle-income countries (LMICs) for women with ovarian cancer. The report summarizes insights from an April 2022 roundtable discussion convened by the Coalition, featuring a diverse panel of global experts including clinicians, policy experts, NGOs, and ovarian cancer patient advocates. Highlights of the report are to be presented prior to the International Gynecologic Cancer Society Annual Meeting on Wednesday, September 28, 2022, at 8:00am EDT at the Arlo Nomad Hotel in Manhattan, NY, with a virtual option.

By 2040, the number of women around the world diagnosed with ovarian cancer will rise almost 42% and the number of women dying from ovarian cancer each year will increase by 50%. Furthermore, based on 2020 mortality rates, if nothing changes, by 2040 it is estimated that over four million women will die from ovarian cancer worldwide, with the majority of those lost from LMICs. The Roundtable aimed to identify challenges and opportunities to improve access to essential medicines and inform the Coalition on actions it could take to advocate for better access to cancer medicines.

“The burden of ovarian cancer disproportionally impacts countries with minimal resources as over 70% of women diagnosed with ovarian cancer live in LMICs. Access to treatment is vital for all women regardless of where they live, but for those in lower income settings it is especially important to address the access challenge now,” said Clara MacKay, CEO of the Coalition. “Barriers to accessing basic care are complex and require coordinated efforts. By partnering with the International Gynecological Cancer Society to expand our initial Every Woman Study™, and with the knowledge gained from the Roundtable, we hope to empower the global community to recognize that ovarian cancer needs to be a priority that requires action at a global and national level.”

In addition to discussing the access to medicines results, the briefing will also cover early anecdotal reports and details of the Every Woman Study™: Low- and Middle-Income Edition. Presenting in person or virtually at the event will be representatives from the Coalition including the Study Lead, their Study partner, the International Gynecologic Cancer Society, along with several of the Study’s Oversight Committee members. Expanding on the 2018 Every Woman Study™️, this new iteration will document the experiences of women with ovarian cancer in up to 30 LMICs, highlighting the true patient experience and the ways in which ovarian cancer is impacting the lives of women around the world. Initial results are expected in the second half of 2023.

“There is a significant lack of local data within LMICs which hinders the development of accessible cancer treatment and services for those populations,” said Frances Reid, Director of Programmes for the Coalition and Study Lead of the Every Woman Study™: Low- and Middle-Income Edition. “By expanding these data, we hope to raise awareness of those gaps in care and support women and clinicians to tackle the societal, systematic and practical barriers that prevent women from accessing the best care possible.”

“The time is now for global policymakers and governments to recognize the impact of ovarian cancer on women, families, societies, and economies,” said Mary Eiken, CEO of the International Gynecologic Cancer Society. “The concept of equity is embedded into the core of our work and this joint project speaks to the power of collaboration and the importance of bridging the widening gap for women worldwide.”

Watch the replay here

Click here for the electronic press kit

About the World Ovarian Cancer Coalition

The World Ovarian Cancer Coalition is a not-for-profit organization, formally established in 2016, working across the globe towards a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live.

The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018. Building on the Study, the Coalition launched the Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™️: Low- and Middle-Income Edition in over 25 countries. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out in 2023.

About the International Gynecologic Cancer Society
Established in 1987 as a not-for-profit, the International Gynecologic Cancer Society is a partnership of advocates, gynecologic oncologists, radiation oncologists, medical oncologists, pathologists, and other clinicians and researchers who devote their professional lives to the field of gynecologic oncology and to uniting the globe in the fight against gynecologic cancers.

The mission of IGCS is to enhance the care of those affected by gynecologic cancers worldwide through education and training and public awareness. The society works to achieve its mission through strategic collaborations with regional and international organizations, hosting and supporting scientific meetings, promoting research and publications, providing mentorship and training opportunities and patient advocacy programming.

The concept of global health equity is embedded in the IGCS mission and is reflected in the breadth of its membership and the design and implementation of its programs. With over 3,000 members from low-, middle-, and high-income countries around the globe, IGCS has purposefully developed an inclusive membership framework that encourages interaction and growth across diverse social, political, and health care systems. Through this framework, IGCS connects members with specific needs to those with corresponding resources and programs; forms partnerships; educates, trains, and mentors clinicians, survivors-patients, and caregivers. More information can be found at www.igcs.org.

Media Contact:
Phaedra Charlton
Director of Marketing and Communications
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

One Woman Health: Opportunities to Benefit All Women

The World Ovarian Cancer Coalition works with a diverse group of nearly 200 patient advocacy organizations from around the world. Many of these organizations focus on ovarian cancer – but many have an interest more broadly in women’s cancers and/or women’s health. This special event held on June 23, 2022 explored the social and economic detriments that undermine access to good health for women – and the opportunities that may exist to work together to achieve change for women in relation to ovarian cancer and/or other health concerns.

Here are the initiatives and organizations mentioned in the video above:

Thank you to our sponsors for helping to make this event possible

Too Late To Treat – Average Time to an Ovarian Cancer Diagnosis is Almost 8 Months

World Ovarian Cancer Coalition stresses the need for awareness never greater

Toronto, Canada, May 5, 2022 – On the eve of the organization’s 10th World Ovarian Cancer Day (May 8), the World Ovarian Cancer Coalition (Coalition) has today released an analysis showing that if actions were taken across all countries to equalize the ovarian cancer diagnostic pathway, the average, time from symptom appearance to diagnosis could be almost halved by close to 4 months. This conclusion is based on a further analysis of the 2018 Every Woman Study™️ findings that showed that, globally, the average time to an ovarian cancer diagnosis from when first noticing symptoms is 31 weeks, or 7.75 months.

“The sooner a woman is diagnosed with ovarian cancer the more likely she will be well enough to start and tolerate treatment,“ states Clara MacKay, CEO of the Coalition, “Yet, sadly too many women receive their diagnosis when they are so unwell that few, if any, options remain. With the advent of new treatments for those with specific genetic mutations or characteristics, this means that many women will miss out on the chance of benefiting from improved outcomes.”

With no screening programme yet available, clinicians who took part in the Coalition’s 2018 Study agreed that raising awareness of ovarian cancer symptoms and risks among women and their physicians provides the best chance of reducing this time to diagnosis. Crucially, the Study found that the more women knew about the disease, the faster they went to their doctor and the more rapidly they were diagnosed.

Key findings from the Coalition’s Every Woman Study™️ highlighted in the Data Briefing on Rapid Diagnosis include:

Over two-thirds of women who contributed to the Study said they knew very little or nothing about ovarian cancer prior to their diagnosis.
9 in 10 women experience one or more key symptoms prior to their diagnosis
4 in 10 women felt their doctor didn’t take their concerns seriously

In some countries women are waiting twice as long for a diagnosis than others

The Briefing also compared annual incidence and prevalence of ovarian cancer and concluded that up to 89,826 women die with ovarian cancer within one year of diagnosis.

With incidence and mortality rates set to climb by 2040, the need for awareness have never been greater. “Too many women are being left behind,” explains MacKay, “even when it comes to symptom and risk awareness. This is something we are determined to change and is why on this our 10th World Ovarian Cancer Day, and for the next two years, we are adopting the theme of “No Woman Left Behind””

To help drive the global awareness movement, the Coalition this year has worked with many of their close to 200 patient advocacy partner organizations to provide core social media materials in as many languages as possible. “Thanks to our supporters and partner organizations, we now have key messages available in 24 languages with more coming in,” said Phaedra Charlton, Director of Communications and Marketing “As we are a global organization, we want to ensure that we reach as many of those at risk as possible, so no woman – no person – is left behind. Last year, thanks to our partners, our message reached over 100 million people, but we still have a lot of work to do.” For many, the opportunity of co-branded translated awareness assets is an important step forward in their work. Raising awareness both amongst women and health professionals are two of the three core activities identified in the latest Data Briefing to reduce delays in diagnosis.

Part of that work, as outlined in this latest Data Briefing includes:

Raise awareness of symptoms among women so they know when to seek help
Improve knowledge among health professionals so they know when to refer women on
Build capacity in health systems to enable timely access to diagnostic tests.

“Rapid Diagnosis” is one of the six Global Goals as set out by the Coalition’s 2020 Global Ovarian Cancer Charter, and states that: “Women must have access to diagnosis without delay. Symptom awareness must be improved so women seek and access appropriate help quickly. Doctors also need support so they know who should undergo testing and that they have access to tests without delay so more women can start and tolerate treatment quickly.”

World Ovarian Cancer Day 2022 has been made possible through the generous contributions of corporate sponsors, including: AstraZeneca, GSK, Novocure, Immunogen, Teckro, Alkermes, Bristol Myers Squibb, and Mersana. Additional support provided by IMV Inc and AOA Dx Inc.

-30-About the World Ovarian Cancer Coalition

The World Ovarian Cancer Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018. Building on the Study, the Coalition launched the Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™️: Low- and Middle-Income Edition in over 25 countries. This next generation of the Study will for the first time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out in 2023.

Media Contact:
Phaedra Charlton
Director of Marketing and Communications
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org