Recent Developments

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

For a downloadable PDF of this release click [here]

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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

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.

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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

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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.