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.

 

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:

• World Ovarian Cancer Coalition logo and brand guidelines
• Every Woman Study™: Low- and Middle-Income Edition logo lockup
• Biographies of Every Woman Study™: Low- and Middle-Income Edition Study Leadership and Oversight Committee Members
  • Headshots

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

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

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

World Ovarian Cancer Coalition stresses the need for awareness never greater

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

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

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

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

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

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

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

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

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

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

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.

-30-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

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

 

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 10^th World Ovarian Cancer Day. On the heels of the most successful campaign to date – with over 18 million people reached – this 10^th 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

Click [here] for a PDF version of this release

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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

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

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 Study^TM 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.”

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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]