Breast cancer advocacy handbook by UICC

Breast cancer advocacy handbook

A handbook to support and inspire cancer advocates

Introduction

Breast cancer is the leading cause of cancer deaths among women, and has become the second most diagnosed form of cancer globally, accounting for 11.5% of all cancer cases worldwide.1 In low-resource settings, it is common for women to present with advanced breast cancer at a healthcare facility; breast cancer survival rates in highincome countries exceed 90%, compared with 66% in India and 40% in South Africa.2

In 2021, the World Health Organization (WHO) established the Global Breast Cancer Initiative (GBCI) aimed at reducing global breast cancer mortality. Breast cancer is the leading or second leading cause of female cancer-related deaths in 95% of countries and must not be overlooked by governments if cancer is to be addressed as a public health issue in their country.

The initiative provides guidance and recommendations for evidencebased interventions across three pillars: early detection, timely diagnosis, and comprehensive cancer management, as outlined in the figure on the following page. Through these interventions, GBCI aims to reduce global breast cancer mortality by 2.5% per year by 2040 and prevent 2.5 million global cancer deaths. If countries do not adopt these interventions, the breast cancer burden is projected to increase to 2.74 million new cases and 875,000 deaths annually by 2030; an increase that will disproportionately affect countries with limited resources. Late stage diagnoses, limited access to treatment and a lack of information regarding early detection and effective therapies, where they exist, leads to higher breast cancer fatality rates, particularly in low- and middle-income countries and among disadvantaged populations.

What is cancer control advocacy?

Cancer control advocacy, which can be applied to breast cancer, is the strategic process of influencing governments, decision makers and other key parties to develop commitments, plans and policies, and allocate the resources needed to drive change.

1. International Agency for Research on Cancer. (n.d.). Global Cancer Observatory: Cancer today. Retrieved August 30, 2024, from https://gco.iarc.fr/today/en/dataviz/pie?mode=cancer&group_populations=1&sexes=0&types=0

2. Global Breast Cancer Initiative Implementation Framework: assessing, strengthening and scaling-up of services for the early detection and management of breast cancer. Geneva: World Health Organization; 2023. Licence: CC BY-NC-SA 3.0 IGO.

GBCI: integrating core pillars with cross-cutting enhancements

Health promotion for early detection

Public health education to improve awareness of the signs and symptoms, and of the importance of early detection and treatment

Timely diagnosis

Public and health worker education on signs and symptoms of early breast cancer so women are referred to diagnostic services when appropriate

Comprehensive breast cancer management

Centralised services and treatment for breast cancer - given that cancer management requires some level of specialised care

60% Early stage

Achieve diagnosis of at least 60% of invasive breast cancers at stage I or II

Enhancing the pillars

60-day diagnosis

Evaluation, imaging, tissue sampling and pathology completed within 60 days

80% treatment completion

80% undergo full courses of multimodality treatment and successfully return home

To build on the above pillars, it is important to consider cross-cutting advocacy efforts, palliative care programmes, survivorship support and the meaningful engagement of people with lived experience.

Targets

Pillars

Executive summary

The Global Breast Cancer Initiative and its implementation framework3 highlight the importance of prioritising breast cancer prevention, diagnosis and treatment, and provide a roadmap for implementable strategies that can be tailored to countries across diverse health systems and resource settings.

Civil society organisations have a critical role to play in driving meaningful action across all regions. In particular, strategic advocacy efforts through coordinated civil society action can contribute greatly to improved prevention, diagnosis, and treatment in line with the GBCI targets, ultimately leading to reduced breast cancer mortality rates and improved health outcomes for those diagnosed with breast cancer.

The global breast cancer community is an active force for change, an influential community that is well known for raising awareness and driving political advocacy. Despite the significant achievements and systems mobilised to support those diagnosed with or affected by breast cancer, the statistics show that much remains to be done. Advocacy wins such as the adoption of new legislation and supportive policies, play a crucial role in advancing progress towards achieving GBCI targets, however, governments must also be held accountable for their subsequent implementation.

To complement the initiative and its framework, this Breast Cancer Advocacy handbook supports the breast cancer community by providing messages, recommended actions, and references for patient groups and the advocacy community to help develop cohesive and impactful advocacy strategies at the community, national and regional levels.

Section 1: highlights the importance of building coalitions, and the key partners and competencies needed within the coalition to inform advocacy strategies and mobilise action.

Section 2: focuses on the importance of the planning steps in developing a national advocacy strategy. The section outlines the GBCI pillars and a tool to help identify the socio-political national context, so that advocates can determine which advocacy angle to use. The section also includes CSO spotlights of successful advocacy efforts related to each of the pillars and illustrates the importance of including the voices of people with lived experience in advocacy plans.

Section 3: provides guidance on how to develop advocacy messaging, together with an illustrative example of a successful advocacy campaign for access to breast cancer treatment, and an overview of monitoring, evaluation & learning.

3. Global Breast Cancer Initiative Implementation Framework: assessing, strengthening and scaling-up of services for the early detection and management of breast cancer. Geneva: World Health Organization; 2023. Licence: CC BY-NC-SA 3.0 IGO.

Translating the GBCI into effective national advocacy requires a comprehensive understanding of local national contexts including the disease burden, trends, recommended and ongoing interventions, advocacy opportunities and messages. To that end, the handbook is intended to:

1. Equip advocates with the knowledge and resources necessary to effectively raise awareness with political actors and position breast cancer as a national and global health priority.

This advocacy handbook serves as a comprehensive guide to support civil society organisations or coalitions to affect change in their national context in line with the recommendations of the WHO GBCI. The handbook is part of a portfolio of UICC resources to support advocacy for breast cancer control. Complementary materials include:

→ An advocacy toolkit intended for cancer advocates to access step-bystep guidance to design and implement effective advocacy strategies, and monitor their progress.

→ UICC’s online self-paced foundational course, introducing breast cancer groups to the three pillars of the GBCI.

→ Breast cancer infographics, social media messages, relevant documents and other resources made available on the resources for breast cancer control page.

2. Offer ideas for whom to engage in advocacy efforts, including policymakers, healthcare professionals, communities, and individuals affected by breast cancer.

3. Provide guidance on how to focus advocacy efforts to support breast cancer prevention, early detection, treatment, and supportive care, based on the national context.

4. Highlight successful advocacy campaigns and initiatives from around the world to inspire and inform advocacy efforts.

→ The Advocacy in action: Cancer control stories from UICC members illustrating how common advocacy principles can be applied across different contexts.

→ Knowledge Summaries for Comprehensive Breast Cancer Control, a policy advocacy toolkit developed with key partners to provide a synthesis of the evidence base for breast cancer control to support advocates to engage in local and national level policy advocacy.

A broader collection of resources to support national advocacy for breast cancer can be found on page 25.

Coalition building

Coalition building is essential for effective breast cancer advocacy as it allows diverse organisations to unite their voices, resources, and expertise towards the common goal of reducing the breast cancer burden in their context. By forming coalitions, advocacy groups can amplify their impact, pool together their strengths, and reach broader audiences.

To learn more, UICC’s coalition building toolkit provides information and exercises to support the process of establishing a coalition.

The following checklist proposes a list of potential constituencies that civil society organisations may want to engage specific to breast cancer advocacy, ensuring diversity and a range of expertise.

Coalition members

Patient groups: key to any advocacy strategy is the inclusion of those with lived experience; their collective voices provide firsthand insights to understand the individual impact and inform policies based on the realities and priorities of those directly affected by breast cancer. In addition, ensuring the meaningful engagement of people with lived experience in the development and implementation of cancer policies is critical as part of the right to health, and to ensure quality cancer care.

Non-governmental organisations working on breast cancer, patient support or women’s cancers: such organisations have a vital role to play in providing breast cancer services and can provide data, information and testimonies to inform advocacy efforts. They can also contribute skills in organising advocacy efforts and mobilising target audiences.

Gender equality groups: these groups have expertise in engaging different subgroups of women and can provide helpful insights into the factors that ease or hinder women’s uptake of breast cancer screening and follow-up care. They can, for example, also provide input on effective inclusion and engagement of men in breast cancer prevention and screening.

Non-governmental organisations working on sexual and reproductive health and family planning, maternal and child health: effective synergies can be explored with those working in this field, both for advocacy mobilisation at the national level, and for the organisation of awareness-raising campaigns in rural and urban areas.

Coalition building

Coalition supporters

Public health experts: such as scholars, public health policy specialists and experienced health advocates can support the coalition and address any knowledge gaps, including how the health system can be improved to facilitate timely breast cancer diagnosis and treatment. These individuals likely serve as advisors on national health issues to governments and parliament, providing an opportunity to expand the coalition’s influence and its network to key decision makers.

Human rights and health rights groups: under a human rights-based framework, legal experts can provide advice on whether patient rights are being upheld and what strategies can be explored to raise the issue at a national level.

Current and former parliamentarians: bring a wealth of understanding of national budget cycles, established connections with Members of Parliament (MPs) and parliament staff, and may have influence to persuade existing MPs to champion breast cancer issues in the country.

National Cancer Centres: advocacy groups can provide National Cancer Centres with critical perspectives and insights to their work and the Centre’s research can provide valuable evidence-based resources for advocates and policymakers.

Medical professionals and associations: their contribution to coalitions can take different forms, such as informing the development of advocacy messaging with knowledge on current gaps in the health system and supporting solutions.

Religious and community leaders: due to their influence within the community, breast cancer advocates should engage them to ensure that they convey accurate messages and harness their leadership position to increase screening uptake.

Breast cancer advocacy

Once the diverse, effective and knowledgeable coalition has been formed, it is time to outline the advocacy strategy, messaging and activities that the coalition will use to advocate for breast cancer control at the local and/or national level.

To develop the advocacy strategy, it is important that all coalition members have a sound understanding of the Global Breast Cancer Initiative and gather data and findings on breast cancer globally and in their country. This can include evidencebased publications, which can include the National NCD or Cancer Plan, or resources such as Globocan, an interactive web-based platform presenting global cancer statistics to inform cancer control and research. If not available, advocacy groups can focus efforts on working with the Ministry of Health to draft a National Cancer Control Plan, with the inclusion of specific policies related to breast cancer control. Coalition members should also conduct a self-evaluation to identify strengths and existing skills in the coalition to help support advocacy efforts, and identify key issues the coalition may wish to address given their potentially diverse interests.

A thorough understanding of the issues related to breast cancer mortality, the national context and the coalition’s goals are critical to selecting and implementing the most effective actions to drive national change. The planning process is essential to optimise resources, minimise risks and maximise opportunities. UICC’s Advocacy Toolkit provides practical guidance and exercises to support the development of a national advocacy strategy.

The following section will detail the GBCI pillars and their related goals as a basis for understanding the level of progress in the country in addressing breast cancer, provide a tool to identify the current socio-political context, and subsequently identify realistic and relevant advocacy goals.

To enhance the GBCI pillars, it is important to consider advocacy asks that could support all three pillars, such as the establishment of national cancer registries, national cancer control planning, patient navigation programmes, and the engagement of people with lived experience to inform policies, services and health systems. Beyond the pillars, advocacy efforts can also focus on addressing palliative care needs for breast cancer patients and survivorship support.

Understanding the Global Breast Cancer Initiative pillars

Health promotion for early detection, including both early-diagnosis and screening programmes

Timely and accessible diagnostic services to distinguish malignant from benign breast abnormalities

Comprehensive multimodality breast cancer management, including surgery, radiotherapy and systemic anti-cancer treatment regimens

Goal: More than 60% of invasive cancers are stage 1 or stage 2 at diagnosis

Goal: Breast cancer to be diagnosed within 60 days (two months) of initial presentations to a healthcare system

Goal: Over 80% of patients receive their recommended treatment to completion without abandonment

GBCI pillar 1

GBCI pillar 2

GBCI pillar 3

Identifying the current socio-political context

It is important to assess the level of political will when developing an advocacy strategy, and how advocacy messages and engaging key partners can leverage existing will or increase political will. Depending on the socio-political context of the country, certain advocacy angles may resonate better; some angles to consider are women’s health, human rights, cost-effectiveness of breast cancer interventions based on local disease burden, or budget advocacy.

The scenarios on the next page can help to identify where the country is in terms of progress and identify the right angle that may inform advocacy efforts. In every scenario, it will be important to organise meetings with key

policymakers to encourage an open dialogue, share advocacy materials, and explain the proposed ask and solutions.

To note, as of 2023, approximately 11% of countries have achieved effective breast cancer screening programmes, and in 90% of countries, the GBCI recommends early diagnosis programmes to raise public awareness, health literacy and participation in programmes for individuals, and the need for policy makers to address social determinants of health4

4. Assessing national capacity for the prevention and control of noncommunicable diseases: report of the 2021 global survey. Geneva: World Health Organization; 2023. Licence: CC BY-NCSA 3.0 IGO.

Implementation

If there is high political will to invest in breast cancer programmes in the country, however progress is slow, it would be useful to focus on a few highimpact interventions, such as improving existing legal and policy frameworks on breast cancer.

In this context, the advocacy priority might be to emphasise the cost-effectiveness of recommended interventions or identify specific opportunities for legal or policy reform that will help to ensure timely and equitable care, supported by policy briefs. This context could also be an opportunity to highlight progress achieved in countries implementing evidence-based recommendations and champion effective breast cancer control programmes.

Sustaining momentum

If there is high political will to invest in breast cancer programmes and robust progress achieved in recent years, it will be important to keep the momentum going and support decision makers to improve effectiveness of interventions and continued funding.

In this context, the advocacy priority might be to celebrate the progress and keep breast cancer on the public agenda. Advocating for robust data collection systems, including national cancer registries can help to inform evidence-based and effective policy decisions and identify disparities in breast cancer care to ensure equitable access. Advocates can also collaborate with decision makers on sustainable financing for breast cancer in the context of universal health coverage.

National drive

If there is low political will to invest in breast cancer programmes, a national drive will be needed to inject a sense of urgency. Increasing public awareness and support in this context will help to encourage commitments from government.

In this context, the advocacy priority might be to increase awareness of the global impact of breast cancer and emphasise the urgent need for improved national breast cancer outcomes. Positioning breast cancer in the context of women’s health could help to prioritise breast cancer through an integrated approach. Alternatively, highlighting the social impact of inaction can garner attention, particularly in low and middle-income countries where over 70% of breast cancer deaths occur prematurely, leaving behind maternal orphans and perpetuating social and economic hardship5

Leverage progress

If there is low political will to invest in breast cancer programmes, for example as a result of a recent government turnover or priority shift, but promising progress achieved in recent years, it will be important to document progress and results achieved. It will also be important, as per the section on ‘national drive’, to highlight the impact and cost of inaction.

In this context, the advocacy priority may be to document progress to date so that you can demonstrate the benefits of the successful breast cancer programmes to the broader healthcare system and make a case to safeguard the progress made in women’s health. To inspire continued investment, advocates may also demonstrate the contribution the country is making to regional targets and position it as a success model in the region.

5. Galukande M, Schüz J, Anderson BO, et al. Maternally Orphaned Children and Intergenerational Concerns Associated With Breast Cancer Deaths Among Women in Sub-Saharan Africa. JAMA Oncol. 2021;7(2):285–289. doi:10.1001/jamaoncol.2020.6583

High Political Will

Developing your advocacy goal

Once the coalition has an understanding of the country’s progress towards the GBCI targets and the socio-political context, these can be brought together to identify an overarching advocacy goal. The following section organised according to the GBCI pillars, provides some illustrative examples of how to identify this goal, along with real-life breast cancer advocacy wins from UICC members.

For practical templates and general guidance on building an advocacy strategy, please refer to the UICC’s Advocacy toolkit.

Idea

Check out ‘Know Your Lemons’, a charity focused on breast health education with programmes and tools designed to overcome taboo, fear, and literacy issues. Their World Breast Alliance Partnership Programme seeks to increase the capacity of organisations to educate and improve early detection for breast cancer in the communities they serve.

Advocacy for health promotion for early detection (GBCI pillar 1):

→ A country with low political will and slow progress (national drive stage). For example, in a context where the majority of breast cancer cases are diagnosed at an advanced stage, advocacy efforts can focus on the development of early detection programmes to support stage shifting.

Stage shifting means detecting breast cancer at an earlier stage, leading to better treatment outcomes and higher survival rates, however a timely and accurate diagnosis, and access to treatment are needed to successfully shift breast cancer from being diagnosed at a late stage to early stage cancer. Early detection programmes may begin with awareness raising for breast health among the population, addressing cultural barriers and stigma, examining symptomatic patients with CBE (clinical breast exam) at a primary health care facility, and training healthcare providers on CBE. Note that CBE is cost-effective and highly feasible in all resource settings.

→ A country with high political will and robust progress achieved (sustaining momentum stage). For example, in a country with capacity to conduct effective mammography screening with adequate coverage, advocacy efforts can focus on communicating the data and celebrating achievements to date and utilising resources to expand access to hard-toreach populations to ensure equitable access to cancer care. Advocating for the establishment of a national breast cancer early detection programme, in which there is significant focus on breast health awareness and women in a target age group are invited to undergo annual clinical breast examination can be a starting point with a goal to establish

a national screening programme once the required financial resources, health infrastructure and quality-control measures are in place.

CSO spotlight: El Salvador

In El Salvador, the Asociación Salvadoreña para la Prevención del Cáncer (ASAPRECAN) engaged key regional collaborators including PAHO and the Ministry of Health of El Salvador to strengthen the national strategy for the early detection of breast cancer and integrate breast cancer screening into the existing cervical cancer screening programme, using a model of care previously developed and tested in Peru. By establishing relationships with key decision makers, ASAPRECAN held a Parliamentary Forum on the Early Detection of Breast Cancer in alliance with the Commission on Women and Gender Equality of the Legislative Assembly of El Salvador, which resulted in a training programme for healthcare professionals being developed and included in the annual operational plan of the Ministry of Health. The training includes modules on clinical breast examination, fine needle biopsy, screening with ultrasound and promoting breast health in the community. The culmination of ASAPRECAN’s advocacy efforts also resulted in the Legislative Assembly of El Salvador allocating funds to continue the project.

Idea

In countries with a strong maternal and reproductive health programme, advocate for the integration of CBE or mammogram. e.g. a policy update to include CBE in ante-natal visits for women of reproductive age.

Advocacy for timely diagnosis

(GBCI pillar 2):

→ A country with high political will but slow progress (implementation stage). For example, in a context where national guidelines are in place, advocacy efforts can focus on pushing for the implementation of referral pathways and organised patient navigation programmes to support the goal of diagnosis within 60 days of initial presentation with a breast abnormality. Timely diagnostics require a series of coordinated services for a definitive cancer diagnosis and staging; delays increase the likelihood of a latestage diagnosis leading to lower survival rates.

→ A country with high political will and robust progress (sustaining momentum stage). For example, in a context where populationbased screening is in place, advocacy efforts can focus on interventions to promote timely breast diagnostics, such as organising services to increase access, well-organised sample-transport and information systems that can minimise patient travel. It is important to keep breast cancer high on the public health agenda and advocate for data collection and research to inform evidence-based policy making or implementation to address inequities.

CSO spotlight: Rwanda

In Rwanda, Rwanda Cancer Relief through their Board Members and network of oncologists created collaborations with the Ministry of Health, Rwanda Biomedical Center and Rwanda Cancer Center to align national healthcare policies and institutions, receive regulatory support, and access data and resources. Rwanda Cancer Relief conducted an initial baseline survey to assess the knowledge level of general practitioners on cancer and NCDs, which was used to inform training for healthcare providers supported by the Ministry of Health, and strengthen referral processes, including the creation of guides and tutorials for healthcare providers, with information on referral patterns and delays in breast cancer cases. Continued extensive research on the breast cancer health landscape and referral pathways was conducted, resulting in the publication of a research paper outlining trends, determinants and policy implications that support evidencebased advocacy for health system changes.

Idea

In response to the need to improve time to diagnosis, FEMAMA, a prominent advocacy group in Brazil, advocated for the 30-day law, which mandates that patients within the public healthcare system must receive a definitive diagnosis within 30 days of initial presentation. FEMAMA played a crucial role in the law’s enactment in 2019 by lobbying for policy changes raising public awareness, and collaborating with lawmakers. Two years later, in 2021, the GBCI set the goal of diagnosing breast cancer within 60 days of initial presentation. Find out more here.

Advocacy for comprehensive breast cancer management (GBCI pillar 3):

→ A country with low political will and declining progress (leverage progress phase). For example, in a context where national guidelines are in place but a change of government has led to de-prioritisation or reduced access to medicines for breast cancer, advocacy efforts can focus on increasing public awareness and highlighting the urgent need to re-prioritise access to essential medicines. This could be supported by positioning breast cancer in the context of women’s health and rights, and including breast cancer treatment in the universal health coverage (UHC) package to ensure there is reimbursement of services and a reduction in out of pocket payments. Incomplete treatment can lead to poorer patient outcomes, including worsened survival, and reduced quality of life.

→ A country with high political will but slow progress (implementation phase). For example, in a context where guidelines and services are in place but many patients are not able to access the recommended care and complete treatment, advocacy efforts can focus on the development and implementation of a national patient navigation programme or supportive services to increase adherence to treatment. Addressing patient- and system-related barriers can support treatment completion and reduce abandonment.

CSO spotlight: Tajikistan

In Tajikistan, treatment abandonment was high due to out-of-pocket expenses and limited political will to address breast cancer. In response, NGO Avesto calculated the cost of basic chemotherapy treatment for the population of Tajikistan using data from

several pharmacies to calculate the average cost based on treatment protocol. Through a series of meetings with the Ministry of Health and the Oncology Institute, including closed meetings, roundtable discussions, and informal meetings with patient advocates, they presented the results to demonstrate the affordability of treatment using generic drugs. NGO Avesto also organised roundtables with journalists to garner national media attention and share stories of people with lived experience. As a result, national health funding was allocated to cover four treatment cycles of che apy and NGO Avesto obtained permission from the Ministry of Health to collaborate with a humanitarian assistance programme for the procurement of oncology medications, including organising the customs clearance and logistics for delivery to the Oncology Institute. In addition, supportive services to increase patient compliance were established, including a hotline for patients and a patient support group.

Idea

Conduct a survey of women with breast cancer to understand their needs and barriers to treatment adherence. Results can inform the development of local or national patient navigation programmes.

After surveying women with metastatic breast cancer, ICANSERVE Foundation, Philippines, rolled out a patient navigation programme and contributed to the 2018 Philippines Cancer Bill, which includes mandatory patient navigation programmes. Find out more here

Enhancing the pillars:

Across the pillars, it is important to consider cross-cutting advocacy efforts, for example supporting the establishment of national cancer registries, national cancer control planning, and patient navigation programmes. If a cancer registry is not yet established, advocating for its implementation can help increase political will; the Global Initiative for Cancer Registry Development (GICR) is a key resource for capacity building for cancer registry implementation. Similarly, if a National Cancer Control Plan doesn’t exist or is outdated, this may be the primary advocacy focus; the International Cancer Control Partnership (ICCP) hosts a database where users can search for and access National Cancer Control Plans and NCD plans to assess the current status in their country.

Advocacy efforts can also focus on palliative care programmes for those with metastatic breast cancer and survivorship support to improve their quality of life by providing comprehensive physical, emotional, psychological, and social support, tailored to their individual needs and those of their families. Across the pillars, advocacy efforts should also focus on bringing the voices of people with lived experience to the forefront and engaging them as experts in policies, services and health systems that are designed for them. The shift from the traditional understanding of patients as merely recipients of health care services to their conceptualisation as active participants in all aspects of their health is critical to ensure equitable access to cancer care as part of the right to health.

Resource

WHO framework for meaningful engagement of people living with NCDs, and mental health and neurological conditions

CSO spotlight: Nigeria

In Nigeria, Project PINK BLUE - Health & Psychological Trust Centre developed a comprehensive advocacy and awareness programme known as the Breast Cancer Navigation and Palliative Programme (BCNPP) to facilitate access to care for metastatic breast cancer patients. Through BCNPP, Project PINK BLUE brought a US-based oncology patient navigator to Nigeria to train nurses and other healthcare workers and established the first patient navigation programme in Nigeria in 2015, creating an online map identifying 116 breast health facilities and establishing a toll-free telephone hotline for patient support, which has now been expanded to five states across the country. Through the BCNPP, they also founded the first cancer support group in Nigeria, which has grown to over 200 members; two of which contributed to the development of Nigeria’s National Cancer Control Plan 2018-2022.

CSO case study: Brazil

In Brazil, FEMAMA has been working for 18 years with its extensive network to impact public health policy decisions, especially for women facing breast cancer. In June 2024, FEMAMA brought together 27 of its most active patient advocacy leaders for the 11th edition of the Women’s Health Leadership Conference, one of its key advocacy projects, aiming to create a favourable political environment for advancing the public health agenda for women. The year’s focus was on the recently sanctioned National Policy for Cancer Prevention and Control, and the need for its regulation and implementation.

In December 2023, the sanctioning of a law, which established the National Policy for Cancer Prevention and Control and the National Patient Navigation Programme, marked a historic milestone for cancer care in Brazil, giving new hope to those who depend on the Sistema Único de Saúde (SUS), Brazil’s government-run public health care system, about 75% of the Brazilian population. In February 2024, FEMAMA leveraged World Cancer Day to mobilise institutions and society to present a manifesto to the Ministry of Health, urging the swift regulation of this policy. In July 2024, this law, that institutes the National Policy for Cancer Prevention and Control, and the National Cancer Patient Navigation Programme, came into force and FEMAMA focused their advocacy efforts on implementing the law in the health system. Conscious of the complexity involved in this process, FEMAMA drew the attention of lawmakers and the Ministry of Health to the most urgent points: guidelines for ensuring the supply of essential oncology medicines; financing, acquisition, and distribution of technologies; and the National Cancer Patient Navigation Programme.

The Conference successfully seized a politically opportune moment to discuss oncology policies in Brazil. With representatives from the national executive and legislative branches, renowned civil society organisations and the pharmaceutical industry, the event was a milestone in coordinating socially and politically relevant actors in the oncology sector. As part of the event, FEMAMA leaders visited the offices of 63 lawmakers, approximately 10% of the total members of the National Congress, in the Chamber of Deputies and the Federal Senate of Brasilia.

Divided according to their respective states and regions, each of the FEMAMA leaders was responsible for visiting the legislators that represent their region, providing information about breast cancer in Brazil and their respective region, and urging congress representatives to pressure the Ministry of Health to publish new regulations ensuring compliance with the recently sanctioned law. To support this dialogue, FEMAMA leaders delivered a manifesto from the FEMAMA Network at each visit, stating the urgency of implementing this law to expand access to early diagnosis and adequate treatment of female cancers, as well as educational materials on cancer produced by their associations.

As a result of these visits, many lawmakers who were not closely monitoring the progress of public policies for cancer prevention and control decided to engage with the topic, resulting in several immediate formal expressions of support directed at the Ministry of Health, calling for action to meet sector demands, such as the creation of the National Patient Navigation Programme and ensuring centralised procurement of medicines in cases required by law, thereby enabling more people to access them. The Conference concluded by highlighting the power of network advocacy and consolidating new relationships between FEMAMA and congress representatives, who will now be recurring political supporters of FEMAMA.

As a federation, FEMAMA continues to monitor and follow the political movements of the National Policy for Cancer Prevention and Control through public demonstrations, interviews and events, democratising access to information on the subject and advocating with the national congress and senate. Leading up to the next Conference actions will be taken to further connect each visited congress representative with the respective patient associations in their region, leveraging opportune moments such as Pink October to reinforce these relationships.

Developing advocacy messaging

Once the advocacy goal and activities are determined, tailored messaging that is clear, concise and evidencebased is critical for advocates to reach and influence target collaborators.

When it comes to identifying advocacy messages for breast cancer, it is important to remember that the ultimate beneficiaries of dedicated national policies will primarily be women who do not necessarily have a ‘voice’, who may live in remote areas and may not be particularly aware of their rights, opportunities and life choices.

Advocacy efforts should consistently be supported by activities to raise awareness, educate and support the community, which in turn, will inform and shape advocacy messages with key decision makers. Advocacy messages and strategies should also be tailored to align with the cultural context, religious beliefs and local languages.

Idea

#DOTHEBREADEXAM is a bread recipe that implicitly teaches women how to self-check for breast cancer. First launched in Lebanon, it featured Um Ali, a famous local baker who used tradition to talk about breasts while overcoming cultural taboos (and social media restrictions).

The following four-fold approach can be adopted to develop robust advocacy messages:

• Define the challenge: use data to identify the national context in relation to the GBCI targets.

• Tell a story: bring it to life by including the voices and experiences of those with lived cancer experience.

• Outline the action: detail precise, cost-effective and locally relevant interventions that can help improve the health systems and promote equitable access.

• Show the result: showcase the health and economic benefits of such interventions.

Advocacy efforts can achieve a higher impact when organised around key dates and events that generate national, regional and global interest. Such dates include international awareness days, the national annual budget cycle, WHO regional meetings, and relevant conferences or United Nations High-Level Meetings. In addition, the following opportunities can also be leveraged:

World Cancer Day, 4 February, inspires collective action bringing together civil society, governments and the private sector around a shared purpose.

World Cancer Congress, every other year, provides opportunities for the global cancer community to showcase progress, share knowledge and good practices, and expand networks.

Breast Cancer Awareness Month, also known as ‘Pink October’ is an opportunity to raise awareness about breast health. UICC has ready-to-use social media cards and messages available here.

Using the media, and social media, is a powerful tool to influence decision makers and inform the public. It will be important as a coalition to design a media advocacy strategy to support targeted activities and advance advocacy goals. UICC’s Advocacy toolkit provides more information on engaging with the media and communication channels.

Illustrative example

Rethink Breast Cancer in Ontario, Canada, started the ‘Bitterest Pill’ petition in 2021 focused on ensuring cancer patients have equal access to take-home cancer drugs. Their robust advocacy messaging for the petition serves as an example of clear, concise and evidence-based messaging that uses the above fourfold approach. Their advocacy ask relates to GBCI pillar 3, with a focus on access to treatment for marginalised populations.

As a result of the petition, all the political parties targeted in the petition committed to improving access to take-home cancer treatments during the election.

Tell a story

Ontario cancer patients younger than 65 years must navigate a maze of financial and administrative challenges to access innovative and effective take-home cancer treatments that are easily and affordably available to patients in other provinces and territories.

How is this fair?

Imagine living in Ontario and while fighting for your life you encounter this stressful process just to get cancer treatments your doctor has prescribed:

• Step 1: Exhaust all private pay options – including maxing out your private drug insurance if you have it.

• Step 2: Apply to the Ontario Trillium Drug Program – encountering risky delays that take an average of one month for approval.

• Step 3: Pay the government an average $4,000/year deductible while working on a reduced income during cancer treatment.

Define the challenge

To put it simply: Canadians living in our Western Provinces, Northern Territories and Quebec have better, faster and more affordable access to advances in cancer treatments than patients in Ontario. Regardless of age, socioeconomic status, or cancer type –when patients in these regions receive their diagnosis, they will be prescribed the approved treatment they need and get it when they need it.

Ontario’s cancer funding is a decade behind the majority of Canada. This is unacceptable.

Outline the action/ Show the result

For approximately $30 million/year, Ontario can close the gap and provide significant financial and emotional relief to patients and their families. That is just 1/10th of 1% of the estimated $63 billion that Ontario spent on healthcare in 2020.

During the pandemic, we’ve been told to stay at home as much as possible to prevent infection spread. For cancer patients who are immunocompromised and at higher risk of complications, taking their treatment at home is the safe choice.

Ontario’s General Election is on June 2nd, 2022.

It’s time for all political parties to commit to equal access to take-home cancer drugs in their platforms.

Monitoring, Evaluation & Learning

Developing a well-designed monitoring, evaluation and learning (MEL) framework is critical to assessing progress against the expected results and objectives of an advocacy strategy, and planning for sustainability of the advocacy work.

At its core, MEL provides an opportunity to identify if organisations or coalitions are accomplishing their advocacy goals, and the extent to which successful advocacy will result in tangible changes nationally, and why the change has taken place. Advocacy is not a linear process; it requires consistent effort, adaptability, and perseverance to navigate challenges and sustain momentum toward achieving long-term goals. An MEL framework with defined indicators and activities is an essential tool to continue to track progress over the lifespan of an advocacy strategy and determine whether it is being successfully implemented. Using an MEL framework enables continuous reflection on progress and provides a structure to adjust activities as needed, ensuring they contribute effectively to the expected results.

Resource

UICC’s ‘Essentials of leadership and management for CSOs in cancer control’ online course includes modules on strategic communication and monitoring, evaluation and learning.

The Global Cancer Observatory (Globocan) is an interactive web-based platform presenting global cancer statistics to inform cancer control and research.

The International Cancer Control Partnership (ICCP) hosts a database where users can search for and access country profiles, National Cancer Control Plans and NCD plans.

The Global Initiative for Cancer Registry Development (GICR) is a key resource for capacity building for cancer registry implementation.

The Integrated Cancer Control Initiative in Latin America (ICCI-LA) provides a comprehensive policy study on health systems response to cancer control in Argentina, Brazil, Chile and Colombia.

A study in JAMA Oncology quantifying the number of maternally orphaned children and the intergenerational consequences of breast cancer deaths among women in sub-Saharan Africa.

The Economist Impact report on rising to the metastatic breast cancer challenge: current and future policy responses assesses barriers, enablers and areas of opportunity in uppermiddle and high-income countries.

The Economist Impact report on the case for investing in women’s cancers in Asia Pacific examines the current disease burden and quality of policies and programmes in six countries.

Country profiles developed by ThinkWell provide insights for CSOs and decision makers to inform evidence-based policy dialogues and engage in health financing advocacy.

The Breast Cancer Revealed initiative published an article on the status of breast cancer in Latin America, and strategies and high-impact priorities to improve clinical outcomes.

The World Health Organisation’s ‘Best Buys’ provides policymakers with a list of recommended interventions to address noncommunicable diseases.

UICC’s advocacy toolkit is intended for cancer advocates to access step-by-step guidance to design and implement effective advocacy strategies, and monitor their progress.

UICC’s coalition building toolkit supports cancer advocates to map coalition members, shape a shared agenda, and determine a coalition governance structure and communication channels.

UICC’s breast cancer infographics, social media messages, relevant documents and other resources made available on the resources for breast cancer control page.

UICC’s online learning offer provides UICC members with access to specialised knowledge and expertise by internationally recognised leaders in their field on priority topics in cancer control.

The Knowledge Summaries for Comprehensive Breast Cancer Control, developed in collaboration with key partners, to support advocates to engage in local and national level policy advocacy.

WHO’s framework for meaningful engagement supports WHO and Member States to cocreate and enhance policies, programmes and services with people with lived experience.

WHO’s technical brief on patient navigation for early detection, diagnosis and treatment of breast cancer provides an understanding of context-specific models for sustainable breast cancer navigation programmes.

Acknowledgements

UICC would like to thank the Working Group for their input and support in developing the Breast Cancer Advocacy handbook: Reem Al-Ajlouni, Jordan Breast Cancer Program/ King Hussein Cancer Foundation and Center; Anna Cabanes, Global Focus on Cancer; Maira Caleffi, FEMAMA; Mishka Kohli Cira, Center for Global Health, National Cancer Institute US; Julie Gralow, American Society of Clinical Oncology; Mary Nyangasi, World Health Organization; Mary Wong, Global Chinese Breast Cancer Organizations Alliance; and Udie Soko, Zambian Cancer Society.

UICC also acknowledges the contributions of the various organisations who have shared their experience in breast cancer advocacy to provide illustrative examples: ASAPRECAN, El Salvador; FEMAMA, Brazil; NGO Avesto, Tajikistan; Project PINK BLUE - Health & Psychological Trust Centre, Nigeria; and Rwanda Cancer Relief, Rwanda. UICC also expresses its thanks to UICC members engaged in the Breast Cancer programme, the Cancer Advocates programme, and the Patient Group Mentoring programme who engaged in the consultation process to review and input to the Breast Cancer Advocacy handbook.

This work was made possible through the support of UICC’s Breast Cancer programme partners, including Pfizer, Daiichi Sankyo, Novartis, NCI Center for Global Health and Susan G Komen.