Recent Developments

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 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:

  1. Raise awareness of symptoms among women so they know when to seek help
  2. Improve knowledge among health professionals so they know when to refer women on
  3. 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.”

Read more about the Coalition’s Global Ovarian Cancer Charter here.

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.

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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 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

Remembering Celina

Last week we shared the very sad news of Celina May’s passing with The Every Woman Study™️ Oversight Committee.  Celina was a part of this dedicated group of international doctors and patient advocates that is overseeing the largest ever study of the experiences of women with ovarian cancer in low- and middle-income countries. Response to the news about Celina from our colleagues on the Committee was immediate and heartfelt.

Celina will be greatly missed by all of us that had the great privilege to meet and work with her. But we firmly believe that Celina’s contribution to The Every Woman Study™️, which has the potential to drive significant change for the many, many women diagnosed with ovarian cancer, will be long-lasting and far-reaching.

Sadly, the many women currently living with or to be diagnosed with ovarian cancer in the future will not have the honour of knowing Celina, but they will directly benefit from her commitment and passion. The Every Woman Study™️: Low- and Middle-Income Edition has the potential to be undertaken in up to 31 countries collecting the views of up to 2.500 women. At its conclusion, we will finally have essential evidence about the experiences of women in these countries which will form the foundation for change to improve outcomes for those diagnosed with the disease.

Celina generously shared her views with us on every aspect of the Study from the perspective of what someone living with the disease should want and expect from us – but also professionally as an experienced communications expert.  Malaysia is one of the countries that is leading the way and likely to be one of the first to start implementing the Study at country level. Celina, alongside team Malaysia, Professor Dr. Woo Lin Ying and Sook Yee Yoon worked hard and with urgency on behalf of women in their country and beyond.  Her passion and fierce determination to support other woman and to make a difference in her own country, led to Malaysia’s very first support group for women with ovarian cancer, Ovarian Cancer Malaysia. We were bowled over by how quickly and professionally Celina set out to fill this gap and we are delighted that this group is now established and will carry Celina’s legacy onward. Reassuring us as we move towards the future is this quote from His Holiness the Dalai Lama, “Just as ripples spread out when a single pebble is dropped into water, the actions of individuals can have far-reaching effects.”

Finally, in the many conversations that we had with Celina she often mentioned her family and her concern about the impact of her ovarian cancer on those she loved most.  We know how heart-breaking it must be for her family, loved ones and many friends. We want you to know that in her life Celina made a difference and we are dedicated to continuing our work with our fond memory of her as a guiding light. We think Co-chair Tracey Adams summed it up best, “May we use Celina’s passion and memory to further drive us with this Study and advocacy for many more.”

 

 

 

LGBTQ2+ Patient Experts

We are excited to share our newest awareness raising campaign that we will be launching to mark Pride month (June) – entitled “No Person Left Behind”. This is just the beginning of work we will be doing to ensure that we better represent all those who are or who could be affected by ovarian cancer.

As a first step, the campaign in June will focus on reflecting the experiences of the LBGTQ2+ community when it comes to ovarian cancer awareness, diagnosis, treatment and overall care. We are recruiting Patient Experts to advise us and inform the campaign and ways forward as we continue to develop more diversified content. If you are interested in becoming a Patient Expert we would love to meet with you – just drop us a line and we can set up a call.

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

Between now and 2020 we will lose over four million women worldwide to ovarian cancer. This is the hard reality of the future of this lethal disease.

Rather, that is unless we take urgent action now.

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

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

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

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

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

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

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

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

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

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

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

Clara MacKay
CEO
World Ovarian Cancer Coalition

World Ovarian Cancer Coalition Data Briefing Projects Loss of Over 4 Million Women to Ovarian Cancer by 2040

World Ovarian Cancer Coalition calls for disease to be made a global priority now

Toronto, Canada, February 1, 2022 – Days before World Cancer Day (February 4), the World Ovarian Cancer Coalition (Coalition) has released a global data briefing with sobering projections about the loss of women to ovarian cancer worldwide and is calling for urgent action and global prioritization of the disease.

“We need to recognize ovarian cancer as the significant global health challenge that it is and take immediate action today to address its trajectory,’’ said Clara MacKay, CEO of the Coalition. “We are seeing a steady increase in women diagnosed with ovarian cancer each year. We need a collective, global commitment and practical action at country level to bolster efforts to prevent, diagnose, and treat women who are at risk or who have ovarian cancer. “

Ovarian cancer is one of the deadliest female cancers with approximately half of women dying within five years of diagnosis. Survival rates for the disease are low globally but are particularly poor in low-income settings.  By 2040 incidence and mortality will have jumped disproportionately in low-income countries, with Africa’s numbers alone almost doubling.

Stark projections for the near future

Key findings and projections highlighted in the Coalition’s Global Ovarian Cancer Charter Data Briefing include:

  • 313,959 women worldwide were diagnosed with ovarian cancer in 2020 – by 2040 this number is expected to rise to 445,721, an overall increase of 42%.
  • In 2020, 207,252 women worldwide died from the disease and that number will increase by 51% by 2040, with a projected number of 312,617 deaths.
  • While the greatest increase of women diagnosed in terms of numbers will be in Asia, the greatest percentage increase will be in Africa, where the number of women diagnosed is expected to rise by 86.8% over the next two decades.
  • The same holds true for ovarian cancer deaths. By 2040, Asia will see the greatest number of deaths overall, but the greatest percentage increase in mortality will be seen in Africa, where it is expected to jump by 92.3% – almost two-fold the number from 2020.

Millions of missing women

Ovarian cancer’s high mortality rate means hundreds of thousands of women die each year from the disease. Current data projections indicate a staggering total loss of 4,145,040 women to the disease by the time we reach 2040.  Millions of partners, colleagues, friends, mothers, sisters, daughters, aunts, and grandmothers will be absent from their families’ tables if the status quo is maintained.

“Additionally concerning is that 70% of women diagnosed with ovarian cancer each year already face overwhelming barriers to access because of geography, economics, or social circumstance.  Treatments are unaffordable; universal healthcare is anything but universal worldwide, and many healthcare systems are just not equipped or resourced to effectively deal with this disease,” added MacKay. “Collectively, we must close the care gap, so no woman is left behind. Everyone living with a diagnosis of ovarian cancer deserves the best chance of survival and the best quality of life possible – wherever she may live.”

While recent advancements in ovarian cancer treatments have been promising, the Coalition’s Global Ovarian Cancer Charter Data Briefing underscores the fact that inequities in access render those developments meaningless for many – particularly for women in poor and developing nations. Increased disease awareness and significant improvements and investment in research, prevention, diagnosis, care, and treatments worldwide are vital so that care gaps can be closed, and all can benefit from progress and have the best possible care.

Read more about the Coalition’s Global Ovarian Cancer Charter here.

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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 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

 

A message from our new Chair

 

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

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

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

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

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

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

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

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

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

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

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

Annwen Jones OBE
Chair, World Ovarian Cancer Coalition

Celebrating 10 years of World Ovarian Cancer Day and 5 years as an organization, the World Ovarian Cancer Coalition commits to a future where no woman is left behind.

For a PDF of this release, click [here]

Toronto, Ontario, October 1, 2021 – Marking its fifth anniversary this year, the World Ovarian Cancer Coalition today has announced significant developments in its evolution as an international network committed to changing the future of ovarian cancer for all women.

Announced earlier this month, the Coalition is partnering with the International Gynecologic Cancer Society (IGCS) on a study of unprecedented scope and scale. The Every Woman Study™️: Low- and Middle-Income Edition will look at the experiences of women with ovarian cancer living in settings that for a number of reasons are not sufficiently understood usually go under-recognized, and are often medically and otherwise underserved.  With up to 30 countries taking part, results from this year-long study will provide crucial evidence and insights in countries that are projected to bear the greatest burden in terms of incidence and mortality over the next twenty years.

Following her retirement as CEO of Ovarian Cancer Canada, Elisabeth Baugh will also be stepping down as Board Chair of the Coalition this December, a position she has held since the organization’s inception 5 years ago. Annwen Jones OBE, Chief Executive of Target Ovarian Cancer in the UK will take over the helm, supported by two Vice-Chairs, Jane Hill of Ovarian Cancer Australia and Robin Cohen, CEO of the Sandy Rollman Ovarian Cancer Foundation.  Of the change, Ms Baugh says, “although no longer Chair I will remain an active member of the Board, and am excited to continue the work that we started over 10 years ago with the establishment of World Ovarian Cancer Day. Our invaluable early partnerships led to the formal creation of the World Ovarian Cancer Coalition several years later. Starting with 30 partner organizations to now close to 200, we have come so far in such a short space of time. We look forward to the future as we scale up our efforts to ensure that no woman – no matter where she lives – is left behind in the fight against this disease.”

As a result of a concerted effort to diversify the Board of Directors, part of that future includes the invaluable knowledge and expertise brought to the Board by two recent appointees, Runcie CW Chidebe of Pink Blue in Nigeria, and Rafe Sadnan Adel of Cancerbd.net in Bangladesh. Both highly accomplished, their experience and perspectives will strengthen the Coalition’s commitment to health equity and the global ovarian cancer community, from low- to middle- to high-income countries.

Another milestone will be reached as plans are already underway for the 10th World Ovarian Cancer Day. On the heels of the most successful campaign to date – with over 18 million people reached – this 10th iteration will reflect the sea change exhibited by the Coalition and its network over the past two years.  On May 8, 2022, the global ovarian cancer community will be called upon to rally together to ensure that no woman is left behind, regardless of cancer type, geography, finances, or situation.

Clara MacKay, CEO of the Coalition sums up the developments this way, “while our accomplishments over the past five years have been great, we are especially excited by the possibilities that lay before us. With a Board of Directors that is stronger than ever, committed strategic partners, like IGCS, and an ever-expanding network of advocates, clinicians, and policy makers, we feel we are truly at the tipping point in our work and that, together, we stand the strongest chance yet of changing the future of this devastating disease”.

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About the World Ovarian Cancer Coalition

Established in 2016, the Coalition is a not-for-profit organization with 145 patient advocacy organization members in 37 countries working to reduce the impact that ovarian cancer has on the lives of women and their loved ones.  More information can be found on www.worldovariancancercoalition.org

For more information contact:

Phaedra Charlton

Director of Communications and Marketing

World Ovarian Cancer Coalition

phaedra@worldovariancancercoalition.org

Inaugural World Ovarian Cancer Coalition Impact Award Winners Announced

Click [here] for a PDF version of this release


Toronto, Ontario, September 21, 2021 – With a formal ceremony set to take place at the end of September, today the World Ovarian Cancer Coalition released the names of this year’s recipients of the inaugural World Ovarian Cancer Coalition Impact Awards.

Twelve awards in 5 categories will be handed out at the Coalition’s Global Partner Meeting, being held virtually September 30 and October 1st. The winners, by category, are:

Charter Champion Award – This category recognizes the exemplary efforts related to the 6 goals of the Global Ovarian Cancer Charter, which was released last year at the International Gynecologic Cancer Society Annual Meeting. All the winners in this category have already established themselves as Charter Champions.

• The Clearity Foundation, United States
• Eierstockkrebs Deutschland e.V., Germany
• The Dempsey Center, United States
• Ovarian Cancer Australia
• Target Ovarian Cancer, United Kingdom
• Kolkata Gynaecological Oncology Trials and Translational Group (KolGOTrg), India

World Ovarian Day Award – This category acknowledges contributions to the annual World Ovarian Cancer Day (May 8) Campaign. The winners for 2021 are:

• Ovacare, Ireland
• Cure Our Ovarian Cancer, New Zealand
• Loto Onlus, Italy

The Every Woman Study™️ Award – this Award is to recognize those that are demonstrating that they are using the Every Woman Study™️ to drive positive change for women within their own settings or country. The award this year goes to:

• Ovarian Cancer Canada

Transformational Research Award – For individual researchers who have demonstrated, through their work, a long-standing commitment to furthering progress in the understanding of ovarian cancer and approaches that have potential to benefit women impacted by the disease. The 2021 award goes to:

• Dr. Garth Funston, United Kingdom

Outstanding Achievement Award – This final award recognizes the lifetime achievement of an individual or organization who has significantly impacted the ovarian cancer community through their work. The inaugural recipient, who was instrumental in founding World Ovarian Cancer Day and the World Ovarian Cancer Coalition is:

• Elisabeth Baugh, outgoing Chair, World Ovarian Cancer Coalition; Ovarian Cancer Canada

Robin Cohen, incoming Vice Chair of the Coalition, CEO of the Sandy Rollman Ovarian Cancer Foundation, and emcee for the ceremony, explains her excitement, “the past two years have been so challenging for us all, so what better time to acknowledge the amazing work of the global advocacy community”. Clara MacKay, CEO of the Coalition adds, “despite the enormous obstacles, our community has shown that we are resilient, adaptable, and 100% dedicated to supporting those impacted by a diagnosis of ovarian cancer – we only wish we could give everyone an award this year as all of our partner organizations are so truly deserving.”

The awards ceremony will be streamed on October 1st during the World Ovarian Cancer Coalition Partner Meeting. More information on the meeting can be found here: https://worldovariancancercoalition.org/partner-meeting/

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About the World Ovarian Cancer Coalition
Established in 2016, the Coalition is a not-for-profit organization with 145 patient advocacy organization members in 37 countries working to reduce the impact that ovarian cancer has on the lives of women and their loved ones. More information can be found on www.worldovariancancercoalition.org

For more information contact:
Phaedra Charlton
Director of Communications and Marketing
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org

THE EVERY WOMAN STUDY™️: LOW- AND MIDDLE-INCOME EDITION

INTERNATIONAL GYNECOLOGIC CANCER SOCIETY AND WORLD OVARIAN CANCER COALITION LAUNCH GLOBAL JOINT INITIATIVE FOR WOMEN –
THE EVERY WOMAN STUDY™️: LOW- AND MIDDLE-INCOME EDITION.

Toronto, Ontario, August 31, 2021 – One year following the announcement of their Strategic Advocacy Partnership, the World Ovarian Cancer Coalition (Coalition) and the International Gynecologic Cancer Society (IGCS) are announcing the launch of The Every Woman Study™️: Low- and Middle-Income Edition at today’s Presidential Plenary of the IGCS Virtual Annual Global Meeting.

With the potential for up to 30 countries to participate in this global study, the objective of this joint initiative is to document for the first time ever, on this scale, the experiences of women with ovarian cancer in Low- and Middle-Income countries (LMIC) from pre-diagnosis through post-treatment. Specifically, the Study is being undertaken because of the current lack of evidence and insight about women’s experiences in LMIC countries – with a view to helping to address global health inequities and because it underscores the belief of both organisations that every woman, no matter where they live, should have the highest quality of care and experience best possible outcomes.

July 2021 projections from GLOBOCAN reveal that the incidence of ovarian cancer will rise overall by 37% worldwide by 2040; however, LMICs will experience a much greater increase. Over the next 20 years the burden of the ovarian cancer will be felt disproportionately by those least able to access the latest in surgery and other treatments. Building on the success of the first Every Woman Study™️ released in 2018, this new edition will specifically look at those settings that for a number of reasons were not sufficiently covered, usually go underrecognized, and are often medically and otherwise underserved.

According to the Coalition’s Programme Director and overall Study Director, Frances Reid, “The first Study provided a wealth of information about the experiences of over 1500 women living with ovarian cancer from around the world. However, with responses mainly from high-income countries, we were always clear that we needed a complete picture of the reality of ovarian cancer for women living in lower income countries. It is our ambition that this Study will reveal the challenges and perspectives of these often-neglected women. Ultimately no woman should be left behind as we work to change the future of this disease and this Study will help provide crucial evidence for work going forward, particularly as these communities will bear the heaviest burden of increases in incidence and mortality in the forthcoming years.”

Guided by an international Oversight Committee co-chaired by Robin Cohen and Dr. Tracey Adams and comprised of leading clinicians and patient advocates, the Study will run over the course of a year primarily in hospitals and clinics. “The Every Woman Study:™️ Low- and Middle-Income Edition is a hugely complex initiative but one that is urgently needed. Despite the many challenges facing clinicians and patients, including COVID-19, we have been humbled by the level of interest in participating in the Study. We believe this represents a genuine opportunity to tackle the very stark health inequities that exist in these settings through global collaboration,” remarked Mary Eiken, IGCS CEO.

Clara MacKay, CEO of the Coalition goes on to say, “We cannot let the gaps in knowledge, diagnosis, treatment and care widen as higher-income countries benefit from access to new medicines. We are also confident that this Study and its results will support the development of strong alliances between the clinical and patient advocacy communities, which we know can be a powerful driver for change.”

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About The Every Woman Study™️ (2018)
Guided by an international expert advisory panel, the World Ovarian Cancer Coalition undertook the first Every Woman Study™ in 2018. The Study included the largest-ever global survey of women with the disease. The objective was simple: to address the evidence gap and identify a way forward to ensure the best chance of survival and the best quality of life for women with ovarian cancer.

Peer reviewed and published in the International Journal of Gynecologic Cancer, the Study’s survey was completed by over 1500 women in 44 countries and 15 languages. Results from this Study led to the development and launch of the Global Ovarian Cancer Charter in 2020.

About the World Ovarian Cancer Coalition
Established in 2016, the Coalition is a not-for-profit organization with close to 200 patient advocacy organization members in 37 countries working to reduce the impact that ovarian cancer has on the lives of women and their loved ones. More information can be found on www.worldovariancancercoalition.org

About the International Gynecologic Cancer Society
Established in 1987 as a not-for-profit, IGCS is a partnership of advocates, gynecologic oncologists, radiation oncologists, medical oncologists, pathologists, and other scientists who devote their professional lives to the field of gynecologic oncology and to uniting the globe in the fight against gynecologic cancers. Currently, IGCS has over 3200 members representing more than 115 countries. More information can be found at www.igcs.org.

For more information contact
Clara MacKay, CEO
World Ovarian Cancer Coalition
cmackay@worldovariancancercoalition.org

Mary Eiken, CEO
International Gynecologic Cancer Society
mary.eiken@igcs.org

CLICK HERE FOR A PDF VERSION OF THIS RELEASE

STATEMENT ON THE RELEASE OF UKCTOCS STUDY RESULTS

Thursday, May 13, 2021 – Released today in the Lancet, the disappointing results from the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS) study only underscore the urgency to develop new screening tools for ovarian cancer, a disease that is often diagnosed at late, less treatable, stages.

UKCTOCS was the largest study of its kind. Starting in 2001, the study focused on the two mainstay tools of the time, CA125 and ultrasound, to see if they could be used to detect ovarian cancer before symptoms develop, thereby allowing women a better chance at survival.

Initial results 6 years ago found that annual CA125 tests followed up with ultrasound for those with abnormal results, did indeed detect more ovarian cancers at an early stage versus no screening at all. However, with a lack of evidence that this would save lives, this did not translate into a recommendation to develop a screening programme.  The results published today have given researchers time to fully analyse the longer-term impact of the screening. Unfortunately, the conclusion is that this kind of screening progamme, for asymptomatic women with no family history of the disease, would not be effective in saving lives.

Clara MacKay, CEO, of the World Ovarian Cancer Coalition:

“Sadly, the findings confirm that this approach to screening does not save lives. However, it is important to note that in the years since the UKCTOCS trial was launched, our understanding of how different types of ovarian cancer start and spread has grown considerably.”

“The lack of an imminent ovarian cancer screening programme, in the way that we have breast and bowel cancer screening programmes, reinforces the vital importance of women seeking help when they experience symptoms, and doctors acting quickly on those concerns. Whilst CA125 and TransVaginal Ultrasound are not suitable for screening women without symptoms, there is very good evidence that they are currently the best way to find women experiencing symptoms who may have ovarian cancer and need further assessment.  It’s so important that process happens promptly. Our Every Woman StudyTM showed that the average time to diagnosis from symptom onset was six months.  In that time a considerable proportion of women will become too unwell to ultimately start and tolerate treatment. This is something we must overcome. “

This is particularly important since the development of new treatments and approaches to surgery, which can offer significant benefits to women.  Whilst the result is disappointing to the global ovarian cancer community, Clara MacKay does see hope on the horizon:

“With more conversations in the clinical community focusing on molecular profiling and performance status rather than disease staging, there is a lot of exciting work being done in research. And while the UKCTOCS study itself did not yield the results we had hoped for, it may still yet prove to be fruitful. With a biobank of samples spanning several years from women who went on to develop ovarian or other types of cancer, there is an invaluable resource for researchers to tap into as they work to find new ways to detect ovarian cancer sooner than we ever have before – paving the way for screening tools for the future.”


About Ovarian Cancer:

‘Ovarian cancer’ is not a singular diagnosis, rather it is an umbrella term for a multitude of different types of cancer that affect the ovaries, fallopian tubes, and the primary peritoneal cavity. It is estimated that there are more than 30 different types of ovarian cancer, and there is a very wide variation in incidence and outlook in terms of the different types.

According to Globocan’s 2020 projections, by 2040, the number of women around the world diagnosed with ovarian cancer will rise almost 42% to 445,721. The number of women dying from ovarian cancer each year is projected to increase to 313,617 an increase of over 50% from 2020.

Five-year ovarian cancer survival rates vary between countries. For example, in more developed countries, current rates range from 36% to 46%. However, in some countries the figure is much lower. Overall, survival rates fall well below that for other cancers, like breast cancer, where five-year survival rates in many countries are close to 90%.

For more information:

Clara MacKay, CEO

World Ovarian Cancer Coalition

cmackay@worldovariancancercoalition.org

Media Contact:

Phaedra Charlton, Director of Communications and Marketing

World Ovarian Cancer Coalition

phaedra@worldovariancancercoalition.org

For a PDF of this statement click [here]