Recent Developments

The World Ovarian Cancer Coalition Launches Ambitious 5-Year Strategy

Seoul, South Korea, November 7, 2023 – The World Ovarian Cancer Coalition has unveiled its ground-breaking 5-year strategy to coincide with its participation at the International Gynecologic Cancer Society Annual Meeting in Seoul, South Korea. This comprehensive strategy is poised to foster the creation of a world where everyone with, or at risk of, ovarian cancer has the best chance of survival and the best quality of life possible, no matter where they live. As the only global advocacy organization dedicated solely to addressing this devastating disease, the World Ovarian Cancer Coalition will harness this unique position to drive profound and equitable change worldwide.

2023-2028 World Ovarian Cancer Coalition StrategyThe Strategy sets plans for a multifaceted approach directed at filling evidence gaps,  mobilising stakeholders, raising awareness, and securing sustainable support for its ambition to see ovarian cancer recognised as a global public health priority.

The World Ovarian Cancer Coalition’s 5-year strategy is built upon four core goals:

  1. Prevention: Recognizing that about 20% of women with ovarian cancer have a genetic mutation that may be inherited, the Coalition aims to ensure that everyone, everywhere, knows their family history and has access to genetic testing and counseling. This proactive approach empowers women to take measures to reduce their risk through surveillance or risk-reduction measures, including surgery.
  2. Awareness & Health Literacy: While increasing awareness of ovarian cancer symptoms is vital for early diagnosis, health literacy remains a significant challenge, particularly among women with limited access to information. The Coalition’s goal is to enhance global awareness of ovarian cancer, offering information on risk reduction, prevention, the importance of rapid diagnosis, and the need for optimal care.
  3. Access to Rapid Diagnosis & Best Treatments: Access to experienced surgeons in high-volume centers and participation in clinical trials are pivotal for improving ovarian cancer survival rates. The Coalition will strive for equitable access to rapid diagnosis and the best possible treatment, irrespective of geographical and socioeconomic factors.
  4. Data & Evidence: Data is crucial for understanding ovarian cancer’s impact and guiding effective policies. Many countries lack comprehensive data on the disease, inhibiting the development of evidence-based plans. The World Ovarian Cancer Coalition’s objective is to fill these information voids through global, national, and local efforts, including the improvement of cancer registries.

Annwen Jones OBE, Chair of the Coalition’s Board of Directors, stated, “Implementation of this Strategy over the next 5-years will have a transformative impact on the lives of those affected by ovarian cancer globally and nationally.  Its success will lie on building on existing partnerships and mobilising collaborators around the world – in every resource setting.  We are confident that this Strategy marks a new beginning in the fight against this disease.”

The Coalition’s strategic pathways include:

  1. Thought Leadership: The Coalition will convene a Global Advisory Council and Global Summit involving leading ovarian cancer clinicians and advocates to develop a shared global vision and action plan, based on new evidence generated by the Coalition and other experts worldwide.
  2. Global Advocacy: The Coalition will conduct research to identify opportunities for progress in prevention, rapid diagnosis, and access to quality care. Partnerships with global health and government agencies will mobilize support for integrating ovarian cancer objectives into existing health initiatives.
  3. Awareness: Compelling messaging will educate and empower those living with, or at risk of, ovarian cancer, emphasizing the significance of family history, genetic testing, and the importance of a more rapid diagnosis. The Coalition will engage advocacy partners, celebrities, and ambassadors to amplify key messages, secure multi-year corporate support for World Ovarian Cancer Day, and expand its network of ambassadors worldwide.
  4. Growing the Grassroots: Advocacy partners will be empowered with high-quality resources and tools to fill knowledge gaps and facilitate collaboration. The World Ovarian Cancer Coalition will actively involve them in developing and implementing initiatives and promoting the sharing of best practices.

CEO of the Coalition, Clara MacKay, added, “We are determined that ovarian cancer is recognised as a global priority so  the trajectory of this disease is changed. If we do not take action and just maintain the status quo over four million lives will be lost to ovarian cancer by 2040. We are fortunate to work with a strong global network of advocates that share our ambition.”

The launch of the World Ovarian Cancer Coalition’s 5-year Strategy coinciding with the International Gynecologic Cancer Society Annual Meeting in Seoul marks a pivotal moment in the fight against ovarian cancer. By driving forward these ambitious goals and strategic approaches, the Coalition is committed to creating a world where every individual affected by ovarian cancer can look forward to the best possible outcomes, regardless of their location or background. Together, the international community can make ovarian cancer a global priority, reducing its impact and improving the lives of countless women around the world.

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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. In tandem with this, the Coalition has also commissioned an 11-country Ovarian Cancer Cost-of-Illness Study, exploring the cost of this disease on health care systems and the economy. Seven of the countries being explored map over the Every Woman Study: Low- and Middle-Income Edition, which will provide a robust set of quantitative and qualitative data. Results from both studies are due in 2024.

Media Contact
Phaedra Charlton
Director of Communications and Marketing
phaedra@worldovariancancercoalition.org

Global Media Briefing Discussing Every Woman Study™: Low- and Middle-Income Edition Highlights Early Insights from Bangladesh in advance of World Gynecologic Oncology Day

Dhaka, Bangladesh – September 19, 2023 – Today esteemed guests from Bangladesh and around the world gathered to mark World Gynecologic Oncology Day to discuss early insights from a landmark ovarian cancer patient experience study underway in the country, the Every Woman Study™: Low- and Middle-Income Edition.

Joining the prestigious panel were Dr. Abdullah, the personal physician of the Prime Minister of Bangladesh; Frances Reid, Director of Programmes and Every Woman Study™ Lead from the World Ovarian Cancer Coalition; Dr. Mostafa Aziz Sumon, International Affairs Secretary of the Oncology Club; and Professor Dr. Shahana Pervin, Country Lead for Bangladesh for the Every Woman Study™.

Chaired by Rafe Sadnan Adel, Founder Chairperson of Cancerbd.net, and Clara MacKay, CEO of the World Ovarian Cancer Coalition, guests discussed critical aspects of women’s well-being with a particular focus on ovarian cancer, one of the most lethal gynecologic cancers for which there is no screening test.

Working in partnership with the International Gynecologic Cancer Society, the World Ovarian Cancer Coalition is currently collecting data in up to 24 low- and middle-income countries of the experiences of women living with a diagnosis of ovarian cancer. Bangladesh was early to sign on the list of countries willing to participate. Event co-chair and Study oversight committee member, Rafe Sadnan Adel, immediately saw the potential of this work, “results from the Study will help us advocate for policies to support cancer prevention and treatment, fundraise for new research and expanded patient support, and strengthen our awareness campaigns.”

Dr. Abdullah expressed, “raising awareness is paramount in the fight against cancer. Achieving this requires specific research and well-thought-out strategies. I am hopeful that the Every Woman Study™, with a focus on ovarian cancer, will achieve success.”

With the incidence of ovarian cancer set to jump by almost 60% by 2040 in Bangladesh, the primary objective of the event was to raise the profile of the disease in the country and more specifically the experiences of the women who are diagnosed. Frances Reid, Study Lead, stated, “while data collection is still ongoing, we already know that the information we are gathering has the potential to improve the landscape for women in the country, and will provide patient advocates and doctors in Bangladesh with invaluable insights that could help shape policies and care.”

Professor Dr. Shahana Pervin, serving as the Country Lead (Bangladesh) for Every Woman Study™, shared her insights, saying, “Data is needed in order for us to be able to make changes, not just cancer registries, but also data of the reality of women and how and when they come to visit us and the barriers that stand in their way.”

Results from the Every Woman Study™: Low- and Middle-Income Edition are due out in 2024 and there will be a report focused on Bangladesh. Clara Mackay, CEO of the World Ovarian Cancer Coalition, remarked, “from the very start of this work, our focus has always been on developing a study, and results, that can be used not only on a global scale, but are robust enough for groups, like Cancerbd.net, to use at country-level to advocate for change and to ensure that women receive the best possible care and have the best chance of survival – no matter where they live.”

About Cancerbd.net
This web-based initiative represents a pioneering effort in the Bengali language, dedicated to fostering awareness about cancer. Operating with a tripartite mission, this portal aims to achieve three core objectives: educating the populace about cancer, disseminating knowledge pertaining to this grave ailment, and extending support to individuals afflicted by cancer.

The principal aim of this platform is to furnish global citizens with comprehensive information about cancer in their native Bengali language. By doing so, it seeks to empower individuals with knowledge, enabling them to make informed decisions regarding this disease. Officially inaugurated on February 14, 2014, under the auspices of the former Information Minister, Hasanul Haque Inu, this momentous occasion took place at the auditorium of the Crime Reporters Association of Bangladesh, situated in the Shegun Bagicha area of Dhaka.

Over the past decade, this platform has remained steadfast in its commitment to raising cancer awareness through the facilitation of information and communication. Furthermore, it has ambitious plans to expand its outreach and impact by incorporating an additional 17 languages in the near future.

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.

Footage of the event is available here: https://www.youtube.com/live/Nnp7fRjYw4U?si=Jvnez3Dh1BCxcFBT

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

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.

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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. 

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 11th 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.

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

[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 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.

 

 

 

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

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 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