Recent Developments

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]

 

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.

Click here for an updated statement.

2020 World Ovarian Cancer Atlas Launched

FOR IMMEDIATE RELEASE

OVARIAN CANCER INCIDENCE SET TO RISE 47% BY 2040 – YET MOST WON’T HAVE ACCESS TO BASIC TREATMENTS

[October 22, 2020 – Toronto, Canada] Recent advances in ovarian cancer treatments have the potential to radically transform outcomes for many women diagnosed with this lethal disease. However, a report published today by the World Ovarian Cancer Coalition finds that most of the projected 434,000 women worldwide to who will be diagnosed with ovarian cancer by 2040 will not have access to these treatments – with many currently not having access to even affordable diagnostics and treatment options that have been in use for many years.

The 2020 World Ovarian Cancer Atlas launched today by the World Ovarian Cancer Coalition paints a disturbing picture where the gap between the standard of care for women who live in low- middle resource settings and those who live in high resource settings is significant and without urgent action will widen.

‘’While wealthy countries are benefitting from game-changing developments in ovarian cancer treatment, the fact remains that the greatest number of women diagnosed with ovarian cancer live in low- and middle-income countries,” explains Clara MacKay, CEO of the Coalition, “and we have a narrow window of opportunity to work together so women aren’t left behind.”

The 2020 Atlas shows that the increase in numbers of women developing ovarian cancer in lower resource settings is set to increase 47% by 2040, and that guidelines, if they exist at all, vary sharply from setting to setting. Intermittent or inadequate infrastructure and financial roadblocks significantly hinder chances of better outcomes for women who simply cannot access best possible care.

“While the Atlas shows that there has never been a more compelling need for progress it also gives us hope, “said Frances Reid, the report’s author and Programme Director of the Coalition. “It is quite evident from this report and the work on our Global Ovarian Cancer Charter that no one country has all the answers. So, no matter where you are, there is room for feasible and aspirational change and there are examples of good practice that can be adopted and learned from. Collaboration is key and women themselves must be at the heart of the process, leading the call for action and informing progress at every step. We each need to recognise ovarian cancer as a regional, national and global priority today.”

The launch of the 2020 World Ovarian Cancer Atlas takes place as the Coalition begins its Charter Summit Series, each focusing on one of the six Global Goals of the Charter. Making Ovarian Cancer a Global Priority is hosted by BBC World Health Check reporter Claudia Hammond, and it will explore the issues with a global expert panel, featuring advocates, patient groups, clinicians working in a variety of settings, and those working in global cancer data and policy.

The Global Charter’s Goals are:

  • Global Priority
    • Ovarian cancer must become a global priority, so that the increasing burden and challenges of successfully treating women with ovarian cancer are recognized and planned for at national, regional, and local levels.
  • Rapid Diagnosis
    • Women must have access to diagnosis without delay.
  • Best Possible Care
    • Women must have access to surgery, treatments and clinical trials that optimize their chances of survival and quality of life, no matter where they live.
  • Family History
    • Women and doctors must have access to appropriate and timely genetic testing and counselling.
  • Data Improvement
    • Data used to develop cancer control plans and treatments must reflect the diversity of local populations to ensure the best possible outcomes.
  • Information and Support
    • Women must have access to good-quality information and support in their own language that helps them to live well with the disease.

If you are interested in covering the event, you are welcome to attend the free event. We can also put you in touch with speakers, and potentially audience members who come from the clinical, patient and cancer policy community from right around the world.

Our next event on data improvement will be on Wednesday 18th November at 1pm GMT. It will feature discussions and interviews on the importance of good quality cancer registration, the challenges of obtaining such data, what can be achieved with registry data, and the importance of diversity in clinical trials.

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About ovarian cancer:
Ovarian cancer is the most lethal of the female cancers for which there is no reliable screening test or vaccine. Most women are diagnosed once the cancer has already spread, making it more difficult to treat. There are often delays in diagnosing the disease, as there is no early detection test, and symptoms are often confused with other, less severe, illnesses. Ovarian cancer is overlooked and underfunded – yet every woman is at risk of developing the disease. Ovarian cancer is cancer arising from the cells in and around the ovaries and fallopian tubes. It forms when there are abnormalities in normal ovarian cell growth. New cells grow unnecessarily, and old and damaged cells fail to die away, causing a build-up that forms a tumour or growth. Those growths have genetic mutations that cause them to multiply.

About the World Ovarian Cancer Coalition:
The World Ovarian Cancer Coalition is a not-for-profit organization that seeks to create a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. With a stellar international Board of Directors, the Coalition builds on the success of World Ovarian Cancer Day (May 8) every year and the Every Woman Study as it looks ahead to further research, awareness raising, and policy work.

For more information contact:
Clara MacKay
Chief Executive Officer
World Ovarian Cancer Coalition
cmackay@worldovariancancercoalition.org

World Ovarian Cancer Coalition launches Global Ovarian Cancer Charter

For a downloadable PDF of this release click [here]


FOR IMMEDIATE RELEASE

Powerful Together: World Ovarian Cancer Coalition launches Global Ovarian Cancer Charter at International Gynecologic Cancer Society Annual Global Meeting

 

September 12, 2020 – Toronto, Canada – Fewer than five years since its inception, the World Ovarian Cancer Coalition today launched the Global Ovarian Cancer Charter at the Presidential Plenary of the International Gynecologic Cancer Society xDigital Annual Global Meeting.

Built on the landmark Every Woman Study™ conducted by the Coalition in 2018, the Global Charter is a living document that seeks to make impactful changes through its six Global Goals:

  • Global Priority
    • Ovarian cancer must become a global priority, so that the increasing burden and challenges of successfully treating women with ovarian cancer are recognized and planned for at national, regional, and local levels.
  • Rapid Diagnosis
    • Women must have access to diagnosis without delay.
  • Best Possible Care
    • Women must have access to surgery, treatments and clinical trials that optimize their chances of survival and quality of life, no matter where they live.
  • Family History
    • Women and doctors must have access to appropriate and timely genetic testing and counselling.
  • Data Improvement
    • Data used to develop cancer control plans and treatments must reflect the diversity of local populations to ensure the best possible outcomes.
  • Information and Support
    • Women must have access to good-quality information and support in their own language that helps them to live well with the disease.

Incidence of ovarian cancer is set to increase by almost 50% by the year 2050 and remains the most lethal of female cancers.  While significant advances in treatment have been made in very recent years, women’s access to them is far from universal, especially in low- to middle-income settings, where the majority of women with ovarian cancer live.

Using the Charter as a framework for change, the Coalition is working with Charter Champions around the world to bring forward examples of inspirational good practice to foster collaboration and sharing. Champions are mainly, but not limited to, patient and clinical organizations who have existing or upcoming programmes that speak directly to one or more of the goals,  The aim is to reduce variations between regions and countries and ensure that women with ovarian cancer have the best chance of survival and best quality of life, wherever they may live.

“We are thrilled to have such a high-profile platform to launch the Global Ovarian Cancer Charter, ” said Elisabeth Baugh, chair of the Coalition and CEO of Ovarian Cancer Canada, “thanks to our Strategic Advocacy Partner and Charter Champion IGCS for this amazing opportunity.  We are truly more #PowerfulTogether as we work to bring together patient and clinical advocacy.  While the challenges are enormous, the opportunity to showcase inspiring programmes from around the world will help drive ovarian cancer awareness and action so that as many women as possible benefit.”

“The International Gynecologic Cancer Society is pleased to have the World Ovarian Cancer Coalition launch its Global Ovarian Cancer Charter during our Presidential Plenary,” remarks Mary Eiken, CEO of IGCS, “which will bring international attention to this important call-to-action. We welcome the opportunity to collaborate with organizations such as the Coalition, to unite regional and international organizations to achieve common goals that include promoting research and ensuring that every woman affected by ovarian cancer has access to the best possible care to optimize her survival and quality of life, wherever and under whatever circumstance she might live.”

The Charter launch marks the start of an active year for the Coalition, with a series of virtual summits planned that will speak to the individual goals and will involve high level organizations, policy influencers, advocates, and reflections on patient experience.  It will also be working with a number of the Champions in low resource settings to pilot a variation of the Every Woman Study™ to provide invaluable evidence to drive action at national and regional levels.

The first Charter event is slated to take place 22 October and will coincide with the release of the 2020 World Ovarian Cancer Atlas.  Moderated by BBC World Health Check presenter Claudia Hammond, this session will focus on the need to make ovarian cancer a global priority and will directly address the significant disparities highlighted in the Atlas.

 

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About ovarian cancer

Ovarian cancer is the most lethal of the female cancers. Most women are diagnosed once the cancer has already spread, making it more difficult to treat. There are often delays in diagnosing the disease, as there is no early detection test, and symptoms are often confused with other, less severe, illnesses. Ovarian cancer is overlooked and underfunded – yet every woman is at risk of developing the disease. Ovarian cancer is cancer arising from the cells in and around the ovaries and fallopian tubes. It forms when there are abnormalities in normal ovarian cell growth. New cells grow unnecessarily, and old and damaged cells fail to die away, causing a build-up that forms a tumour or growth. Those growths have genetic mutations that cause them to multiply.

 

About the World Ovarian Cancer Coalition

The World Ovarian Cancer Coalition is a not-for-profit organization that seeks to create a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. With a stellar international Board of Directors, the Coalition builds on the success of World Ovarian Cancer Day (May 8) every year and the Every Woman Study as it looks ahead to further research, awareness raising, and policy work.

About International Gynecologic Cancer Society

The International Gynecologic Cancer Society (IGCS) is a professional medical society with over 3,100 members from low-, middle-, and high-income countries. It is dedicated to the prevention, treatment, and study of gynecologic cancers, and its mission is to enhance the care of women with gynecologic cancer worldwide through education and training and public awareness. In its global fight against gynecologic cancers, IGCS achieves this mission through strategic collaborations with regional and international organizations, scientific meetings, research and publications, mentorship and training programs, outreach, and patient and advocacy community engagement.

 

For more information contact:

 

Clara MacKay
Chief Executive Officer
World Ovarian Cancer Coalition
cmackay@worldovariancancercoalition.org

 

Mary Eiken, MS
Chief Executive Officer
International Gynecologic Cancer Society
mary.eiken@igcs.org

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.  According to a recent survey led by the Coalition, many patient organizations are facing significant challenges in the wake of the pandemic,  You can read the results from the survey here. The text of the joint statement is below, or you can view the PDF here.


INTRODUCTION

As representatives of 9 global cancer coalitions and alliances, representing 750 patient advocacy and other cancer organizations and the interests of over 14 million patients around the world1, we have united to share the following statement on COVID-19 and a call for a global plan of action for cancer to meet the challenges of future pandemics or health crises.

Although in some countries we are seeing encouraging signs that the worst phase of the pandemic is coming to an end albeit with concerns about a potential second wave, in other countries COVID-19 continues to pose severe challenges. However, we believe that this is a crucial time to start addressing how we can restore cancer services safely and effectively and without undue delay where at all possible.

As an alliance of cancer organizations representing patients from all over the world, we believe we have an important role to play in sharing and reinforcing critical key messages. This includes messages to encourage those who are living with cancer to continue treatment and to those with concerns about symptoms to visit their primary health care providers as soon as possible. It is also essential that we support organisations working at national and local level who are directly providing support and information for cancer patients at this challenging time.

THE CHALLENGES

We have seen first-hand the devastating impact that COVID-19 has had on cancer services and patients in many countries including:

  • Suspension of many screening and diagnostic services;
  • Delays on the part of those with symptoms that could be cancer in seeking medical assessment or postponing planned investigations – which will undoubtedly lead to an increase of cancers diagnosed at later stages and with higher mortality rates;
  • Cancellation and/or deferrals of life-saving treatments, including surgery, chemotherapy, immunotherapy, targeted therapy, and radiation;
  • Changes in treatment regimens to ones that allow for the best balance between clinical efficacy and protection against exposure to the virus;
  • Interruption of vital research and clinical trials that are essential to developing effective future cancer treatments;
  • Plummeting incomes for charities and not-for-profit patient advocacy organizations that play a vital role in supporting cancer patients – at a time when these organizations are reporting a significant COVID-19 related increase in demand for information and support, including demand for new information resources that are COVID-19 specific. There is a real threat that this fall in income will mean many cancer patient advocacy organizations will cease to exist;
  • The need for these same charities and not-for profits to change working practices almost overnight including major upscaling of technical know-how and equipment, moving face-to-face services and activities to virtual platforms, moving from office to home based working and managing the impact of reduced staff numbers due to financial stresses.

THE WAY FORWARD

We must do whatever is required to combat the impact of the above challenges.

We acknowledge the efforts that have been made by national front-line workers and healthcare systems to deal with the pandemic. We are aware of the tremendous toll that this crisis has had on the physical and emotional well-being of all healthcare workers, including those from cancer services. They must be fully supported to recover from the physical and emotional impact experienced during this time.

We applaud efforts that have been made in some areas to provide cancer patients continued access to the best treatment and care possible. It is especially important that we recognise these good practices as measures that can be implemented in a future health crisis.

Best practices include:

  • Hospitals that are designated or designed as COVID-19 free centres where cancer patients can be treated at much lower risk of catching the virus;
  • Where this is not possible, onsite separation of cancer patients who need to visit hospital from those who may have COVID-19. Cancer patients must be confident that they can safely access services;
  • A focus to ensure that there is a rapid catch-up to post COVID-19 levels of cancer treatment as well as in screening programs and follow-up investigations;
  • Ambulatory services designed to deliver, where practical, safe and possible, treatments or tests at a patient’s home;
  • Tele-medicine services – including telephone, online, and virtual connections to healthcare teams and individual clinicians, decreasing the need for in-person hospital visits, particularly for routine follow-up appointments;
  • Innovative ways of involving family and carers to participate in consultations where patients may not be allowed to bring anyone with them, for example, through virtual services.

We also know from our own member organizations that there are many excellent examples of good practice in relation to supporting cancer patients during this time, for example, by offering direct access to psychological support services specifically for those experiencing anxiety as a result of COVID-19 and the establishment of app-based support groups.

Indeed, many new services offer the potential to increase accessibility to vital support, not just during a pandemic, but once we return to some state of normality.

The current international health crisis has also seen a sometimes fractured and competitive cancer community come together, with regular online meetings to share experiences, implement new ways of working and, most of all, improve communications. Other key players within the sector (including pharmaceutical, bio-tech, technology and academia) have also come together in innovative collaborations to tackle the COVID-19 challenge.

We believe that actions like those described above should form part of a clear and thorough global plan of action for our cancer communities that can be drawn upon during this, as well as, future pandemics or crises.

At the global and national level, patient advocacy organizations, governments and health services, must work together with other key stakeholders including industry and academia, to ensure that we regain the ground that has been lost to the COVID-19 pandemic.

We the undersigned are here to play our part in this crucial work.

Advanced Breast Cancer Global Alliance
Global Lung Cancer Coalition
Global Colon Cancer Association
International Brain Tumour Alliance
International Kidney Cancer Coalition
Lymphoma Coalition
World Bladder Cancer Patient Coalition
World Ovarian Cancer Coalition
World Pancreatic Cancer Coalition


 

1 Globocan 2018 https://bit.ly/Globocan accessed 20/6/2020

Estimated number of prevalent (5-year) cases in 2018, worldwide, both sexes, all ages

 

Cancer 5-year prevalence (Global)
Kidney 1,025,730
Ovary 762,663
Bladder 1,648,842
Colorectum 4,789,635
Non-Hodgkin Lymphoma 1,353,273
Hodgkin Lymphoma 79,990
Primary malignant Brain tumours (CNS), all ages 771,110
Lung 2,129,964
Pancreatic 282,574

Prevalence data for advanced breast cancer is not available on Globocan. The 14m figure used includes an estimated figure of 2m people worldwide living with advanced breast cancer. This is based on an assumption that of the 6,875,099 people (Globocan, 5-year breast cancer prevalence) living with breast cancer one-third are living with advanced breast cancer.

 

Joanne Kotsopoulos, Ph.D., Women’s College Research Institute


I am part of a large team of scientists, collaborators, research staff, and trainees at Women’s College Research Institute (WCRI) in Ontario, Canada dedicated to improving the management continuum of women who are at a high risk for breast and ovarian cancers. Much of our team’s research focuses on women with a BRCA1 or BRCA2 mutation who face significantly increased risks of developing those cancers.

Approximately 20% of ovarian cancers are attributed to a BRCA1 or BRCA2 mutation. Fortunately, women who know they carry either mutation are able to make evidence-based decisions to prevent this fatal disease with risk-reducing surgery. By identifying mutation carriers and offering them timely preventative surgery we can help prevent ovarian cancer from starting. Our ongoing study at Women’s College Hospital, The Screen Project, offers genetic testing for these BRCA gene mutations to anyone in Canada irrespective of their family history.

Unfortunately, surgical removal or the ovaries and fallopian tubes, called bilateral salpingo-oophorectomy – remains the only effective way to prevent ovarian cancer and improve survival in this population. We are working closely with women who are BRCA mutation carriers and are undergoing oophorectomy, to collect valuable information on quality of life, menopausal symptoms, bone health, and other non-cancer outcomes following preventive surgery. This allows us to offer evidence-based management options to help alleviate both the short- and long-term effects of early menopause that result from this surgery.

As part of a large international collaborative study, we have the power to produce high quality data that can be implemented worldwide for the greatest impact. Our deepening understanding of hereditary cancers at a fundamental level will ultimately help us to deliver personalized strategies to improve women’s health through lower incidence and mortality rates globally. We continue to evaluate the role of several risk factors, including hormones and reproductive factors, as well as screening, on the risk of developing or dying of this disease.

Lately there has been widespread interest in studying the fallopian tubes as the origin site for some ovarian cancers – a very new area of research that is currently understudied. Some experts have proposed that just removing the fallopian tubes, called salpingectomy, may prevent some cases of the disease. Our team at WCRI recently received funding to investigate how this procedure impacts ovarian cancer risk and outcomes in women with either a BRCA1 or BRCA2 mutation. These critical findings will ensure that only highly effective prevention options are offered to this high-risk population.