On September 28, 2022, the World Ovarian Cancer Coalition held a media breakfast briefing in New York City prior to the International Gynecologic Cancer Society Annual Meeting. Below is the replay from this event.
World Ovarian Cancer Coalition to Unveil New Report that Highlights Gaps in Ovarian Cancer Care within Low- and Middle-Income Countries
Insights will outline challenges and opportunities to improve equitable access and affordability to essential medicines in ovarian cancer
Toronto, Canada, September 7, 2022 – Today, The World Ovarian Cancer Coalition (Coalition), announced that it will release findings from a new report titled, The Journey to More Equitable Ovarian Cancer Care, Access to Essential Medicines Roundtable Report, that identifies challenges and opportunities surrounding access and affordability of essential medicines in low-and-middle-income countries (LMICs) for women with ovarian cancer. The report summarizes insights from an April 2022 roundtable discussion convened by the Coalition, featuring a diverse panel of global experts including clinicians, policy experts, NGOs, and ovarian cancer patient advocates. Highlights of the report are to be presented prior to the International Gynecologic Cancer Society Annual Meeting on Wednesday, September 28, 2022, at 8:00am EDT at the Arlo Nomad Hotel in Manhattan, NY, with a virtual option.
By 2040, the number of women around the world diagnosed with ovarian cancer will rise almost 42% and the number of women dying from ovarian cancer each year will increase by 50%. Furthermore, based on 2020 mortality rates, if nothing changes, by 2040 it is estimated that over four million women will die from ovarian cancer worldwide, with the majority of those lost from LMICs. The Roundtable aimed to identify challenges and opportunities to improve access to essential medicines and inform the Coalition on actions it could take to advocate for better access to cancer medicines.
“The burden of ovarian cancer disproportionally impacts countries with minimal resources as over 70% of women diagnosed with ovarian cancer live in LMICs. Access to treatment is vital for all women regardless of where they live, but for those in lower income settings it is especially important to address the access challenge now,” said Clara MacKay, CEO of the Coalition. “Barriers to accessing basic care are complex and require coordinated efforts. By partnering with the International Gynecological Cancer Society to expand our initial Every Woman Study™, and with the knowledge gained from the Roundtable, we hope to empower the global community to recognize that ovarian cancer needs to be a priority that requires action at a global and national level.”
In addition to discussing the access to medicines results, the briefing will also cover early anecdotal reports and details of the Every Woman Study™: Low- and Middle-Income Edition. Presenting in person or virtually at the event will be representatives from the Coalition including the Study Lead, their Study partner, the International Gynecologic Cancer Society, along with several of the Study’s Oversight Committee members. Expanding on the 2018 Every Woman Study™️, this new iteration will document the experiences of women with ovarian cancer in up to 30 LMICs, highlighting the true patient experience and the ways in which ovarian cancer is impacting the lives of women around the world. Initial results are expected in the second half of 2023.
“There is a significant lack of local data within LMICs which hinders the development of accessible cancer treatment and services for those populations,” said Frances Reid, Director of Programmes for the Coalition and Study Lead of the Every Woman Study™: Low- and Middle-Income Edition. “By expanding these data, we hope to raise awareness of those gaps in care and support women and clinicians to tackle the societal, systematic and practical barriers that prevent women from accessing the best care possible.”
“The time is now for global policymakers and governments to recognize the impact of ovarian cancer on women, families, societies, and economies,” said Mary Eiken, CEO of the International Gynecologic Cancer Society. “The concept of equity is embedded into the core of our work and this joint project speaks to the power of collaboration and the importance of bridging the widening gap for women worldwide.”
Click here for the electronic press kit
About the World Ovarian Cancer Coalition
The World Ovarian Cancer Coalition is a not-for-profit organization, formally established in 2016, working across the globe towards a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live.
The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018. Building on the Study, the Coalition launched the Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™️: Low- and Middle-Income Edition in over 25 countries. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out in 2023.
About the International Gynecologic Cancer Society
Established in 1987 as a not-for-profit, the International Gynecologic Cancer Society is a partnership of advocates, gynecologic oncologists, radiation oncologists, medical oncologists, pathologists, and other clinicians and researchers who devote their professional lives to the field of gynecologic oncology and to uniting the globe in the fight against gynecologic cancers.
The mission of IGCS is to enhance the care of those affected by gynecologic cancers worldwide through education and training and public awareness. The society works to achieve its mission through strategic collaborations with regional and international organizations, hosting and supporting scientific meetings, promoting research and publications, providing mentorship and training opportunities and patient advocacy programming.
The concept of global health equity is embedded in the IGCS mission and is reflected in the breadth of its membership and the design and implementation of its programs. With over 3,000 members from low-, middle-, and high-income countries around the globe, IGCS has purposefully developed an inclusive membership framework that encourages interaction and growth across diverse social, political, and health care systems. Through this framework, IGCS connects members with specific needs to those with corresponding resources and programs; forms partnerships; educates, trains, and mentors clinicians, survivors-patients, and caregivers. More information can be found at www.igcs.org.
Media Contact:
Phaedra Charlton
Director of Marketing and Communications
World Ovarian Cancer Coalition
phaedra@worldovariancancercoalition.org
Too Late To Treat – Average Time to an Ovarian Cancer Diagnosis is Almost 8 Months
World Ovarian Cancer Coalition stresses the need for awareness never greater
Toronto, Canada, May 5, 2022 – On the eve of the organization’s 10th World Ovarian Cancer Day (May 8), the World Ovarian Cancer Coalition (Coalition) has today released an analysis showing that if actions were taken across all countries to equalize the ovarian cancer diagnostic pathway, the average, time from symptom appearance to diagnosis could be almost halved by close to 4 months. This conclusion is based on a further analysis of the 2018 Every Woman Study™️ findings that showed that, globally, the average time to an ovarian cancer diagnosis from when first noticing symptoms is 31 weeks, or 7.75 months.
“The sooner a woman is diagnosed with ovarian cancer the more likely she will be well enough to start and tolerate treatment,“ states Clara MacKay, CEO of the Coalition, “Yet, sadly too many women receive their diagnosis when they are so unwell that few, if any, options remain. With the advent of new treatments for those with specific genetic mutations or characteristics, this means that many women will miss out on the chance of benefiting from improved outcomes.”
With no screening programme yet available, clinicians who took part in the Coalition’s 2018 Study agreed that raising awareness of ovarian cancer symptoms and risks among women and their physicians provides the best chance of reducing this time to diagnosis. Crucially, the Study found that the more women knew about the disease, the faster they went to their doctor and the more rapidly they were diagnosed.
Key findings from the Coalition’s Every Woman Study™️ highlighted in the Data Briefing on Rapid Diagnosis include:
- Over two-thirds of women who contributed to the Study said they knew very little or nothing about ovarian cancer prior to their diagnosis.
- 9 in 10 women experience one or more key symptoms prior to their diagnosis
- 4 in 10 women felt their doctor didn’t take their concerns seriously
In some countries women are waiting twice as long for a diagnosis than others
The Briefing also compared annual incidence and prevalence of ovarian cancer and concluded that up to 89,826 women die with ovarian cancer within one year of diagnosis.
With incidence and mortality rates set to climb by 2040, the need for awareness have never been greater. “Too many women are being left behind,” explains MacKay, “even when it comes to symptom and risk awareness. This is something we are determined to change and is why on this our 10th World Ovarian Cancer Day, and for the next two years, we are adopting the theme of “No Woman Left Behind””
To help drive the global awareness movement, the Coalition this year has worked with many of their close to 200 patient advocacy partner organizations to provide core social media materials in as many languages as possible. “Thanks to our supporters and partner organizations, we now have key messages available in 24 languages with more coming in,” said Phaedra Charlton, Director of Communications and Marketing “As we are a global organization, we want to ensure that we reach as many of those at risk as possible, so no woman – no person – is left behind. Last year, thanks to our partners, our message reached over 100 million people, but we still have a lot of work to do.” For many, the opportunity of co-branded translated awareness assets is an important step forward in their work. Raising awareness both amongst women and health professionals are two of the three core activities identified in the latest Data Briefing to reduce delays in diagnosis.
Part of that work, as outlined in this latest Data Briefing includes:
- Raise awareness of symptoms among women so they know when to seek help
- Improve knowledge among health professionals so they know when to refer women on
- Build capacity in health systems to enable timely access to diagnostic tests.
“Rapid Diagnosis” is one of the six Global Goals as set out by the Coalition’s 2020 Global Ovarian Cancer Charter, and states that: “Women must have access to diagnosis without delay. Symptom awareness must be improved so women seek and access appropriate help quickly. Doctors also need support so they know who should undergo testing and that they have access to tests without delay so more women can start and tolerate treatment quickly.”
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.
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 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
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
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
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]
World Cancer Day: COVID-19 Impact Report Released
Late last year we asked our partner organisations to participate in a follow-up COVID-19 impact survey. This was an initiative of the Global Cancer Coalitions Network (GCCN), of which we are a member.
We are happy to share the final results of that survey with you. Released on World Cancer Day during the GCCN Coalition Connection inaugural event on COVID-19, the survey results show that patient advocacy organisations are facing a clear and present danger with few signs of reprieve as the pandemic continues. The video replay of the Coalition Connection event can be found [here].
We encourage everyone to share this report with colleagues, contacts, and corporate partners, as it clearly articulates the resource challenges many of our partner organisations face as a result of the pandemic. In addition to the report, the GCCN has also created a series of social media panels that can be used on all channels. All resources can be accessed by clicking [here].
Updated Joint Statement on COVID-19
In response to the global pandemic, the World Ovarian Cancer Coalition collaborated with 8 other global cancer coalitions and alliances in order to jointly call for a plan of action to ensure that we regain ground that has been lost as a result of COVID-19 and protect cancer services and patients.