Progress on tests to detect ovarian cancer earlier stubbornly slow and globally major inequities are widening
Toronto, Canada, March 22, 2023 – In advance of leading global gynaecological oncology experts coming together this week at the annual Society of Gynecologic Oncology’s (SGO) meeting in Tampa, Florida, the World Ovarian Cancer Coalition has today released its World Ovarian Cancer Coalition Atlas 2023, a comprehensive literature review identifying the global trends in incidence, mortality, and survival of this disease which continues to have the highest mortality rate of all the female cancers. Whilst there have been an encouraging number of new studies on ovarian cancer in the years since the Coalition’s first edition of the Atlas, the need to make the disease a global priority is as urgent as ever.
Based on 2020 mortality rates, it is estimated that by 2040 over 4 million women will be lost to ovarian cancer. A population-wide screening programme remains a long-held but distant dream, and women across all economies face barriers to diagnosis and care, with many diagnosed so late that nothing can be done, if they are diagnosed at all. What comes through clearly in this latest edition of the Atlas is that without action, the gap between those who can access the best possible care and those who cannot will widen significantly.
While those with ovarian cancer in high-income countries fare better overall, there remain major variations across the continuum of care. Inconsistent availability and usage of genetic testing, diagnostics, and the latest options in treatment and specialist centres access mean that many women fall by the wayside – exposing not only geographical but racial divides between and within countries.
In low- and middle-income countries, where over 70% of women with the disease live, the picture is far bleaker, with cases set to rise at a disproportionate rate as those economies grow and develop, further entrenching disparities that already exist. Datasets that can inform cancer control plans are poor and incomplete. Health care systems are weakened by lack of human resource and basic infrastructure. For many women, the cost of their care falls to them and their families causing extreme financial toxicity, deterring many from seeking help to begin with. And geographic and cultural barriers can also hinder appropriate health seeking behaviours.
In order to better qualify and quantify the burden of the disease, the Coalition is undertaking two critical projects in 2023. The ongoing Every Woman Study™: Low- and Middle-Income Edition is being conducted in 24 countries with close to 2000 women expected to share their experiences of ovarian cancer. Conducted in partnership with the International Gynecologic Cancer Society (IGCS), this highly complex Study will, for the first time, give voice to women who have largely been left unheard.
Frances Reid, Director of Programmes and Every Woman Study™ Lead for the Coalition says, “It is encouraging to see an increasing focus on ovarian cancer in recent years, however given the enormous challenges facing women in lower-income countries, for many the latest developments are of little value, and progress overall is slower than it could be”. Tracey Adams, a leading gynaecologic oncologist in South Africa and Co-Chair of the Study remarks, “This version of the Every Woman Study™ will help us bring the reality of women in low- and middle-income countries into sharp relief so that we can not only qualify their experiences, but also shed light onto the key challenges and opportunities that will help the ovarian cancer community advocate for change – on a local, national, and international level.”
As a companion to the Every Woman Study™, the Coalition is also embarking on another critical piece of work, a Cost-of-Illness Study. In the hope of solidifying the case for urgent change, the Coalition will look at the economic and societal costs of ovarian cancer in 11 countries, representing high- to low-income settings. The Study will also shed light on the impact that positive changes to diagnosis and treatment of the disease could make. Attending this year’s SGO Conference, Clara MacKay, CEO of the Coalition says of this Study, “Combined with the patient experience evidence we are generating with the Every Woman Study™: Low- and Middle-Income Edition, it is our hope that these two Studies will help us identify concrete priorities for a global plan of action that will be endorsed by the international community. Ultimately, until we commit to making this disease a global priority, we are sadly facing a future where over 4 million women are lost to this disease, and where women across all economies face a chasm of disparities and poor outcomes.”
Both Studies are set to conclude this year, with initial results becoming public early in 2024.
About the World Ovarian Cancer Coalition
Formally established in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit focused on ovarian cancer. Working with close to 200 patient advocacy organisations around the world, the Coalition is determined that every woman with ovarian cancer should have the best chance of survival and best quality of life – wherever she may live.
The Coalition builds on the significant impact of the annual flagship ovarian cancer awareness campaign – World Ovarian Cancer Day, started in 2013 and the ground-breaking Every Woman Study™ published in 2018. The Coalition launched a Global Ovarian Cancer Charter at the International Gynecologic Cancer Society (IGCS) annual meeting in 2020. The Charter, a living document, pivots around six Global Goals and is a clear call-to-action for all those committed to improving survival and quality of life for women with ovarian cancer. In 2022 and in partnership with IGCS, the Coalition is undertaking the Every Woman Study™: Low- and Middle-Income Edition in 24 countries.. This next generation of the Study will for the first-time detail the experiences of women living with an ovarian cancer diagnosis in settings that, for a number of reasons, have been until now overlooked. Initial results from this Study are due out early 2024.
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- Every Woman Study™: Low- and Middle-Income Edition logo lockup
- Biographies of Every Woman Study™: Low- and Middle-Income Edition Study Leadership and Oversight Committee Members
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World Ovarian Cancer Coalition