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Nigerian Health Leaders partner with Global Coalition on Ovarian Cancer Initiatives

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Abuja, Nigeria – 8 May 2024 – Marking World Ovarian Cancer Day, today the Nigerian Institute for Cancer Research and Treatment (NICRAT) and the World Ovarian Cancer Coalition have announced that they have signed a letter of agreement setting out a shared commitment to improving outcomes for women with ovarian and other gynecological cancers in Nigeria.

Rising incidence and mortality rates underscore the critical need for collaboration to addressing the challenges of the disease, including prevention, diagnosis, treatment, and ongoing care.

Professor Usman Malami Aliyu, MBBS, MPH, FWACS remarked, “Through this agreement the World Ovarian Cancer Coalition and NICRAT are making a positive statement about the power of collaboration between patients, patient advocacy organizations, health care professionals, researchers, and policy makers. We believe that together we can harness our diverse expertise to accelerate solutions that will improve outcomes. This partnership exemplifies our shared commitment to making a significant impact in the lives of women in Nigeria.

According to the latest Globocan data, global ovarian cancer incidence is set to rise by 55% and mortality by almost 70%. With significant variations between countries, the Coalition will later this year release data from two key studies, an Ovarian Cancer Cost-of-Illness Study and the Every Woman Study™: Low- and Middle-Income Edition. Both studies involve patient advocates and healthcare professionals based in Nigeria.

Clara MacKay, CEO of the Coalition explains the importance of these two key pieces of work for the country: “Featured in both studies, the data we will have for Nigeria will help us better understand challenges and opportunities. Our intention is that these Studies will help inform our global advocacy efforts but also be a powerful resource for organizations working at country level. We are delighted that Nigeria is the first country from these Studies to agree to a partnership of this kind.

Goals of this new partnership include:

Strengthening the role of NICRAT in national ovarian cancer initiatives
Fostering collaboration among stakeholders
Improving funding for research and access to quality care across the country

Her Excellency Dr. Zainab Shinkafi-Bagudu, a global health advocate, Chairperson of First Ladies Against Cancer of Nigeria, and World Ovarian Cancer Coalition Ambassador highlighted the significance of this partnership: “With incidence set to rise by 120% and a similar surge in mortality expected to occur in Nigeria by 2050, it is vital that we find ways to work together on the challenge of ovarian and other women’s cancers. The establishment of NICRAT was a such an important, groundbreaking moment for cancer-care in Nigeria. This new his partnership is a hugely positive development and I know will help us ensure that we leave No Woman Behind.”

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 everyone living with, or at risk of, ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. More information can be found on www.worldovariancancercoalition.org

Leveraging the momentum of their annual flagship World Ovarian Cancer Daycampaign, established in 2013, and insights from the groundbreaking Every Woman Study™ in 2018, the Coalition continues to spearhead initiatives for change. At the International Gynecologic Cancer Society (IGCS) annual meeting in 2020, it introduced the Global Ovarian Cancer Charter, emphasizing six Global Goals to enhance care and outcomes. Furthering its research, the Coalition, in collaboration with IGCS, is conducting the Every Woman Study™: Low- and Middle-Income Edition across 22 countries, focusing on previously underrepresented populations. This effort is complemented by an 11-country Ovarian Cancer Cost-of-Illness Study commissioned by the Coalition. The study will evaluate the economic impact of ovarian cancer, exploring direct and indirect costs of the disease across low-, middle-, and high-income countries. Results from these comprehensive studies are anticipated in 2024, promising to offer pivotal insights and foster targeted interventions to mitigate the disease’s burden.

About NICRAT

The National Institute for Cancer Research and Treatment (NICRAT), established by the Federal Government under the NICRAT Establishment Act 2017, is tasked with leading and coordinating cancer research, treatment, and control across Nigeria. NICRAT’s mission is to eliminate cancer through the implementation of rigorous regulations and policies, supported by high-quality, evidence-based research and treatment strategies, executed by a team of highly competent professionals. As a visionary leader in the field, NICRAT aims to significantly impact cancer prevention, treatment, and control, not only within Nigeria but across Africa. Its strategic objectives include providing policy advisory services, regulating and enhancing access to cancer care, driving research and development, mobilizing resources, maintaining a cancer registry, promoting public education, and building capacity in cancer prevention and control.

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

NICRAT:
Dr Musa Ali-Gombe
Director Clinical Services
National Institute for Cancer Research and Treatment (NICRAT)
aligombem@nicrat.gov.ng

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One Woman Health: Opportunities to Benefit All Women

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The World Ovarian Cancer Coalition works with a diverse group of nearly 200 patient advocacy organizations from around the world. Many of these organizations focus on ovarian cancer – but many have an interest more broadly in women’s cancers and/or women’s health. This special event held on June 23, 2022 explored the social and economic detriments that undermine access to good health for women – and the opportunities that may exist to work together to achieve change for women in relation to ovarian cancer and/or other health concerns.

Here are the initiatives and organizations mentioned in the video above:

Thank you to our sponsors for helping to make this event possible

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Remembering Celina

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Last week we shared the very sad news of Celina May’s passing with The Every Woman Study™️ Oversight Committee. Celina was a part of this dedicated group of international doctors and patient advocates that is overseeing the largest ever study of the experiences of women with ovarian cancer in low- and middle-income countries. Response to the news about Celina from our colleagues on the Committee was immediate and heartfelt.

Celina will be greatly missed by all of us that had the great privilege to meet and work with her. But we firmly believe that Celina’s contribution to The Every Woman Study™️, which has the potential to drive significant change for the many, many women diagnosed with ovarian cancer, will be long-lasting and far-reaching.

Sadly, the many women currently living with or to be diagnosed with ovarian cancer in the future will not have the honour of knowing Celina, but they will directly benefit from her commitment and passion. The Every Woman Study™️: Low- and Middle-Income Edition has the potential to be undertaken in up to 31 countries collecting the views of up to 2.500 women. At its conclusion, we will finally have essential evidence about the experiences of women in these countries which will form the foundation for change to improve outcomes for those diagnosed with the disease.

Celina generously shared her views with us on every aspect of the Study from the perspective of what someone living with the disease should want and expect from us – but also professionally as an experienced communications expert. Malaysia is one of the countries that is leading the way and likely to be one of the first to start implementing the Study at country level. Celina, alongside team Malaysia, Professor Dr. Woo Lin Ying and Sook Yee Yoon worked hard and with urgency on behalf of women in their country and beyond. Her passion and fierce determination to support other woman and to make a difference in her own country, led to Malaysia’s very first support group for women with ovarian cancer, Ovarian Cancer Malaysia. We were bowled over by how quickly and professionally Celina set out to fill this gap and we are delighted that this group is now established and will carry Celina’s legacy onward. Reassuring us as we move towards the future is this quote from His Holiness the Dalai Lama, “Just as ripples spread out when a single pebble is dropped into water, the actions of individuals can have far-reaching effects.”

Finally, in the many conversations that we had with Celina she often mentioned her family and her concern about the impact of her ovarian cancer on those she loved most. We know how heart-breaking it must be for her family, loved ones and many friends. We want you to know that in her life Celina made a difference and we are dedicated to continuing our work with our fond memory of her as a guiding light. We think Co-chair Tracey Adams summed it up best, “May we use Celina’s passion and memory to further drive us with this Study and advocacy for many more.”

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LGBTQ2+ Patient Experts

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We are excited to share our newest awareness raising campaign that we will be launching to mark Pride month (June) – entitled “No Person Left Behind”. This is just the beginning of work we will be doing to ensure that we better represent all those who are or who could be affected by ovarian cancer.

As a first step, the campaign in June will focus on reflecting the experiences of the LBGTQ2+ community when it comes to ovarian cancer awareness, diagnosis, treatment and overall care. We are recruiting Patient Experts to advise us and inform the campaign and ways forward as we continue to develop more diversified content. If you are interested in becoming a Patient Expert we would love to meet with you – just drop us a line and we can set up a call.