Global Collaboration and Groundbreaking Progress: Ensuring No Woman is Left Behind in the Fight Against Ovarian Cancer

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Over the past few weeks, I’ve had the privilege of attending two transformative global cancer meetings: the European Society of Medical Oncology (ESMO) Congress and the Union for International Cancer Control (UICC) World Cancer Congress. These experiences have left me feeling inspired and also deeply moved. I believe that these gatherings not only highlight advancements in science and advocacy work but also reinforce the very essence of what we stand for—ensuring that no woman is left behind in the fight against ovarian cancer.

“It is remarkable to witness the progress being made in treatments.”

It is remarkable to witness the progress being made in treatments. At ESMO, a Phase 1 antibody-drug conjugate (ADC) study offered hope for patients with heavily pretreated ovarian cancer, and promising results from studies on cervical and endometrial cancers were shared. These advances are the latest groundbreaking developments in what has been an exciting few years in gynaecologic oncology. Yet, while these victories are to be celebrated, I feel a profound sense of responsibility. With World Gynaecologic Cancer Day just recently behind us, we must reflect on the importance of continuing to strive for improvements in survival rates and quality of life for all women affected by gynaecological cancers. Our vision, as outlined in our 2023-2028 strategy, is clear: everyone impacted by ovarian cancer must have the best chance of survival, no matter where they live​.

“Together we can accomplish far more than we ever could alone”

Beyond the science, what struck me at ESMO was the power of collaboration and partnership. The Patient Advocacy Track united patients, families, oncologists, and healthcare professionals in ways that were, simply put, awe-inspiring. It reinforced for me that together, we can accomplish far more than we ever could alone. I believe that the strength of our global advocacy community, with its passion and commitment, will continue to be the driving force behind profound change. It is remarkable how this network of advocates and professionals embodies our shared mission: to drive equitable and meaningful change for everyone affected by ovarian cancer.

“The emotion toll of knowing that 91% of [the socioeconomic burden of ovarian cancer] comes from the value of lives lost is something that weighs heavily on me and my colleagues.”

At the UICC World Cancer Congress, the unveiling of our Socioeconomic Burden Study was a significant moment. This study, covering 11 countries, quantified that ovarian cancer results in $70 billion USD in losses each year, touching not just healthcare systems but entire national economies. The emotional toll of knowing that 91% of this burden comes from the value of lives lost is something that weighs heavily on me and my colleagues. We feel an even greater urgency to act, knowing that without intervention, millions of women could be lost to ovarian cancer by 2050. It’s moments like this that remind me why our No Woman Left Behind approach is not just a slogan—it is a commitment to equity, access, and survival for all women, regardless of their socioeconomic status or location.

Our Every Woman Study™: Low- and Middle-Income Edition, from which we presented high level results at UICC, was another profound highlight. The data we’ve gathered from 2,446 women in 22 low- and middle-income countries provides never-before-seen insights into their experiences. It demonstrates in clear terms how deeply inequities affect ovarian cancer care, and how much more we need to do to close these gaps. I look forward with much anticipation to releasing more insights at next month’s International Gynecologic Cancer Society meeting in Dublin. It will be an honour to stand with IGCS colleagues, our partners in this work, as we unveil more from this groundbreaking Study. Both of our studies align with our strategic goal of addressing the gaps in global data and evidence, ensuring that every woman, no matter where she lives, can access rapid diagnosis, the best treatment, and the highest quality of care.

One of the most uplifting moments of the World Cancer Congress was the launch of the Nigerian National Institute for Cancer Research and Treatment (NICRAT). It is remarkable to see such a powerful movement take shape in Nigeria. I feel truly optimistic that under NICRAT’s leadership, and with the partnerships we are forging, real and lasting change for ovarian cancer patients in Nigeria is within reach. This, again, shows the power of partnership and collaboration—working together, we can and will create better futures for women facing this disease.

“I am filled with a deep sense of hope and purpose”

As I return to my desk, I am filled with a deep sense of hope and purpose. The insights, the data, and the partnerships we have developed are not just abstract concepts—they are the foundation for real action. I believe that, through our No Woman Left Behind initiative and the strategic pathways outlined in our 2023-2028 plan, we are well-positioned to make significant strides. Together, with our partners, advocates, and supporters, we will ensure that every woman—has the best chance of survival and the best quality of life possible, no matter where she lives.

Clara MacKay, CEO

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Reflections on 2023 and the year ahead from our Chair

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

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

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

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

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

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

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

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

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

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

Annwen Jones OBE, Chair of the Board of Directors.

 

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The World Ovarian Cancer Coalition Launches Ambitious 5-Year Strategy

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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

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

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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

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