In her previous blog, Rose Brade, policy advisor for Cancer Research UK’s international cervical cancer prevention programme, wrote about her personal experiences with vaccine hesitancy and cervical cancer prevention. In this follow-up piece, Rose and Benda Kithaka, health advocate and co-founder of Women4Cancer, discuss what the newly adopted ‘World Health Organization (WHO) Global Strategy towards eliminating cervical cancer’ means for women and girls around the world, and how civil society has a vital role to play. This comes as governments around the world begin implementation of the Global Strategy at country level.
What is civil society and why is it important?
Civil society includes charities, development NGOs, community groups, women’s organisations, faith-based organisations, professional associations, trade unions, social movements, coalitions and advocacy groups, as defined by WHO. It’s a diverse grouping and part of the reason why it’s such a force to be reckoned with when we consider efforts to reach elimination. As discussed previously, high uptake of cervical cancer prevention and treatment requires social mobilisation in combination with clinical innovations. Too many women and girls face stigma or contend with low awareness in their communities─ this can be the difference between accessing a life-saving vaccination or screen, even where services are available. To this end, Benda and I take this opportunity to deep dive into the work of our two organisations, Cancer Research UK (UK based) and Woman4Cancer (Kenya based) who work across social engagement and research functions, to demonstrate the breadth and scale of civil society action. We’ll also discuss the significance of when such civil society organisations come together.
Cancer Research UK
In 2019, Cancer Research UK’s international prevention programme expanded its remit to cervical cancer, in recognition of the moral imperative to ensure cervical cancer prevention is for all women, including those in low-and middle-income countries (LMICs) who shoulder 84% of the global burden and account for around 90% of deaths. To help advance knowledge of the protective immunity of a single dose of the HPV vaccine, we’re proud to be co-funding — with the Bill & Melinda Gates Foundation and the National Cancer Institute, part of the National Institutes of Health— the ongoing PRIMAVERA trial in Costa Rica. If one dose is proved feasible, we’d need half of current stocks. Today, only 15% of age-eligible girls globally are fully vaccinated against HPV. Whilst reasons for this shortfall are complex and many, lack of supply has played a role. Strengthening one dose evidence could therefore transform access and affordability of the vaccine, accelerating progress to WHO’s 2030 target of 90% of girls fully vaccinated.
Over the past 8 years, Women4Cancer has worked tirelessly to highlight cervical cancer as a public health problem to both government and the community in Kenya. A first step was to raise general cancer awareness, initiating Kenya’s first national cervical cancer awareness week in January 2019, which has since been adopted as an annual event by Kenyan Ministries of Health. Women4Cancer’s work is largely volunteer-led, recruiting dedicated volunteers with skills to engage in policy advocacy, community education and technical assistance. The team offer integrated screening for cervical and breast cancers free of charge for women in rural Kenya who are historically underserved ─ as well as setting up robust patient navigation programmes led by survivors. This has helped ensure that after screening camps, any woman with results suspicious for cancer is not lost to follow-up, but instead accesses quality and timely treatment. We’ve demonstrated that innovating away from traditional approaches, for example ─ decentralisation of services from hospitals into the community and drawing on the lived experience of survivors to promote health-seeking behaviours ─ can have unique cut-through. This will be a strategy to increase leverage as we look to community action to achieve elimination ─ and civil society is paving the way.
Cervical Cancer Action for Elimination (CCAE) is a global civil society network of organisations and individuals working together to accelerate progress towards cervical cancer elimination. Established in 2007, it was the first global partnership aimed at reducing cervical cancer in high-burden, low-income countries and has raised the number of advocates working in this space. Cancer Research UK recently became co-chair of the network, alongside The American Cancer Society (ACS) and the Union of International Control (UICC). Similarly, Women4Cancer joined CCAE in 2019. CCAE’s objective is to support national and regional civil society organisations to promote the implementation of the Global Strategy. In practice, the vision is to capacity-build local actors so that implementation is needs-driven and tailored to specific contexts. We’re a long way off. However, our plan is one of social mobilization ─ to empower local partners to have conversations with decision-makers in their country, drawing on local data and case studies to make the case for cervical cancer to be prioritized. We’re creating toolkits with specific asks of governments and will facilitate training workshops, led by advocates for advocates, to strengthen outreach.
We know this approach works. For Women4Cancer, working with ‘big sister’ organisations like ACS UICC and CRUK has meant that as a younger organisation it has been possible to achieve key milestones without the pain of the learning curve. For example, advising the government on best practice for cervical cancer prevention has been a hallmark of civil society working in this space for years. Women4Cancer has paralleled this way of working and achieved great successes─ playing a key role in the recent national introduction of the HPV vaccine for girls aged 10 in Kenya.
Diversity in civil society action
Whether it’s technical assistance, research funding, leading advocacy campaigns or driving forward national implementation, we’ve hopefully shown that civil society will be instrumental in ensuring the WHO Strategy translates to action. For this to happen, CCAE calls for the establishment of interim progress targets by governments, that can be monitored and reported against at global events. 2030 targets are a good first step, but we recognise the pre-requisite of regional partners working with host governments for actionable benchmarks, to ensure cervical cancer remains on the national and global agenda.
For more information on example collaborations, information on our network members, or resources to help in your cervical cancer advocacy, visit CCAE.
The views expressed are those of the author. Posting of the blog does not signify that the Cancer Prevention Group endorse those views or opinions.