Defining a place to start – the potential of women’s cancers

This article offers some thinking on the issue of where to start cancer control in low- to middle-income countries and suggests that women’s cancers provide a compelling starting position. This view draws on two inter-related arguments. The first argument is the idea of treating cancers that are treatable and argues that a focus on women’s cancers, specifically breast and cervical cancers, is a first step towards developing wider cancer programmes. The second argument centres on the need to mobilize civil society rather than relying on governments for investment in cancer control. We argue for a critical role for NGOs in investing in cancer treatment but also in mobilizing and replicating the successful models of women’s cancer advocacy in breast cancer. We argue that getting it right for women’s cancers can pave the way for the broader development of cancer services.

Inequities in cancer outcomes between people from low- and middle-income countries (LMICs) and high-income countries (HICs) provide significant motivation for renewed efforts in global cancer control. Calls for national cancer control plans offer a necessary mechanism for countries to plan their approach to the cancer problem but fall short of defining the place to start at a time when starting somewhere is the critical objective. The problem can seem too enormous to deal with. Indeed, the call to action eloquently outlined in the 2011 Closing the Cancer Divide by the Global Task Force on Expanded Access to Cancer Care and Control (GTFECCC) report (1) highlights that inequalities are exacerbated by the sheer size of the problem and the need to overcome attitudes that reproduce inequities such as arguments for a singular focus on prevention. The report suggests a focus on what can be achieved rather than what cannot and calls for identification of opportunities that demonstrate success. So where is the starting point?

Internationally the most common approach to thinking about this question centres on the following:

• prevent those cancers that can be prevented;
• treat cancers that are treatable;
• support those living with cancer.

For LMICs this provides a broad framework from which to consider overall investment in cancer control. In prevention the clear starting point is tobacco control given the ongoing rise of tobacco consumption in these countries with 80% of smokers now residing in LMICs. Globally significant efforts are focused on supporting the legislative frameworks that assist governments to reduce the sale and use of tobacco and tobacco products through organizations such as The McCabe Centre for Cancer and the Law. Vaccination for preventable cancers is also a growing focus for LMICs where the majority of cancers related to infections occur. This is a key area where global investment through organizations such as GAVI, the vaccine alliance, is helping to bring low-cost vaccination to those who need it most.

Much larger challenges arise for decisions about investment in cancer diagnosis and treatment. What does treatable mean in the context of LMICs when following the model of treatment adopted in high income countries would cripple economies in a heartbeat? Recent Lancet Commission reports on cancer surgery (2) and radiotherapy (3), alongside WHO recommendations on essential medicines for cancer treatment (4), highlight the divide in terms of treatment access but also begin to outline a starting place for investment and a model to follow. However, these reports present enormous challenges to economies also facing a large burden of communicable diseases, hampered further by limited health infrastructure including workforce. This highlights the dual challenges of access and affordability.

In our region of South East Asia and the Pacific the urgency to tackle NCDs is marred by the re-emergence of infective diseases, such as dengue, SARs, H1N1 which have claimed the attention and resources of already overburdened health systems. There are stark differences between the more developed countries such as Hong Kong, Taiwan and Singapore and those that are developing. In the latter, National Cancer Control Plans are rudimentary or non-existent. Those that exist on paper are barely implemented, thus rendering cancer control strategies inconsistent and ineffective. Driving cancer control initiatives in this context is imperative with the expected increase of >50% in the number of cases by 2025 (5).

This article offers some thinking on the issue of where to start by focusing on two inter-related arguments. The first argument is that there are clear and compelling reasons, consistent with the idea of treating cancers that are treatable, for countries to utilize a focus on women’s cancers, specifically breast and cervical cancers, as a first step towards developing cancer programmes. While breast cancer is often portrayed as getting too much resource in high-income countries, an alternative perspective is that breast cancer has led the way in many aspects of cancer service delivery that could serve as a model for LMICs. The second argument centres on the need to mobilize civil society rather than relying solely on governments for investment in cancer control. We argue for a critical role for NGOs in investing in cancer treatment but also in mobilizing and replicating the successful models of women’s cancer advocacy in breast cancer. We argue that getting it right for women’s cancers can pave the way for the broader development of cancer services.

Why start with breast and cervical cancer?

There are several key features of breast and cervical cancers that, while having similarities and differences, make them ideal starting points for LMIC investment in cancer service development and treatment investment.

Cervical cancer is predominantly a problem of LMICs with 84% of all cases occurring in less developed countries (http://www.wcrf.org/int/cancer-facts-figures/data-specific-cancers/cervical-cancer-statistics accessed 19 February 2016) and claiming the lives of over 260,000 women annually. Two major LMIC regions, Africa and South America, have the highest incidence of cervical cancer globally along with the Caribbean. Cervical cancer is virtually all related to one causative factor, the human papilloma virus infection (HPV), for which there is an available and affordable vaccine able to prevent 70% of all cervical cancers (6). Importantly, there are global funding mechanisms through GAVI that can support the integration of the HPV vaccine into national vaccination programmes.  For those women already exposed to HPV, early detection of cervical cancer is possible with low-cost technologies such as Visual Inspection with Acetic Acid (VIA) (http://screening.iarc.fr/doc/RH_via_evidence.pdf accessed 5 February 2016;) (7) and for some patients with pre-cancerous lesions immediate treatment is possible, thus reducing health-care costs and problems of loss to follow-up.  VIA is also readily able to be integrated into existing primary care and community health-care services, consistent with calls for integrated or diagonal approaches that mutually strengthen health systems overall while addressing disease-specific priorities (1). A focus on re-skilling existing health professionals in primary, community and maternal care environments will assist with increasing the proportion of women diagnosed with early disease where treatment for localized invasive cancers consists of relatively low-cost surgery and/or radiotherapy.

There are working examples of successful approaches in our region (8). VIA has been incredibly successful in Thailand where before the introduction of VIA, only 5% of women had been screened. Today, the Thai government provides either Pap or VIA in all 76 provinces. By 2008, VIA coverage rates ranged from 26–58%, with some areas achieving 80% coverage (9). Today, in collaboration with the Centre for Disease Control, HPV testing has been introduced in a pilot programme as part of these initiatives.

In Malaysia, a population-based cervical cancer vaccination programme for 13 year old girls was initiated in 2010 with a reported 87% coverage in 2011. A catch up programme has also been implemented for 18 year olds. Through GAVI support, a cervical cancer vaccination programme has started in Lao, whilst in Vietnam, PATH has assisted in developing a similar screening programme.

Each of these experiences adds considerably to the body of experience that can be learnt from and used to inform adoption of initiatives in other countries. A remaining challenge is to ensure good local evaluation capacity and the ability to document outcomes of implementation that will inform future initiatives.

Breast cancer is the commonest cancer in women worldwide with 53% of cases occurring in less developed countries (http://www.wcrf.org/int/cancer-facts figures/ data-specific-cancers/breast-cancer-statistics accessed 5 February 2016). There are also indications that the incidence of breast cancer is rising at a more rapid rate in some countries in Asia than in Western countries possibly due to adoption of western lifestyle and diet (10). Early detection is possible and while population-based mammographic screening may not be economically possible, strategies such as raised public awareness of early detection and clinical breast examination (CBE) performed by primary and community care practitioners are cost effective and will improve outcomes (http://www.iccpportal.org/sites/default/files/resources/UICC_EarlyDetection_BreastAwareness_FA.pdf accessed 19 February 2016). Treatment for early disease is relatively low cost with access to surgery and radiotherapy critical to success.

Thus both cervical and breast cancer provide an investment opportunity to address cancers of high relevance to LMICs and from which there is maximum opportunity to reduce cancer incidence (cervical), improve early detection and achieve cures.

While we will deal specifically with the role of non-government organizations later, it is important to recognize that prevention and screening or early detection interventions in some countries have not been government driven. There is often a critical role for non-government organizations in establishing proof of concept in targeted populations and working in partnership with governments to support programme expansion.  For example, Singapore Breast Cancer Foundation initiated the first mobile mammography screening centre, before its absorption into BreastScreen Singapore run by the Government’s Health Promotion Board. In Malaysia, the first cancer screening services were started by the National Cancer Society Malaysia (NCSM). In the late 1960s, with the assistance of NCSM, the first cytology department was established in the Institute of Medical Research. Pap Smears were conducted through the Society before being introduced into Family Planning Clinics in 1981 and later into Ministry of Health programmes in 1995 (11). Similarly, breast cancer mammography screening was introduced by NCSM in 1985 before integration into Ministry of Health programmes. Today, opportunistic mammography screening is still provided primarily by non-governmental and private centres.

It is also critical to recognize that a focus on prevention and early detection is only ethical if it is backed up by access to appropriate treatment and or palliative care. Without this all efforts to change public attitudes towards a belief that there is value in early diagnosis will fail and negative stereotypes of cancer as equal to death will prevail. The successful programmes around breast cancer diagnosis and management in Jordon through the King Hussain Cancer Centre (KHCC), a non-government funded institution, rested on this critical factor. Indeed KHCC’s ability to attract the best medical leaders and to start treatment programmes that achieved outcomes equivalent to those in HICs was a key factor in building public confidence and in turn investment (personal communication, Princess Dina Mired).

Why start with curable cancers?

Globally cancer is stigmatised and associated with fatalistic beliefs, and while the fatalism many people feel about cancer is abating for most cancers in high-income countries, these beliefs remain paramount in many LMICs. Important work in 2007 by the Livestrong Foundation (http://images. livestrong.org/downloads/flatfiles/what-wedo/our approach/reports/cancerstigma/LSGlobalResearchReport.pdf) identified that for many people cancer continues to be associated with inevitable death and awareness of cancer prevention, early detection and treatment is low. The report also found that there are largely untapped opportunities to capitalize on “…shifting perceptions and positive change”.  The stories of cancer survivors are key to building on these opportunities.

In high-income countries survivors of breast cancer, and to a lesser extent cervical cancer, have been at the forefront of positive change in both public awareness of early detection and a reduction in cancer-associated fatalistic beliefs. Patient stories and publically visible role models of survival offer hope and motivation to women to take positive steps to safeguard their own health through participation in early detection, but also to act on symptoms they might experience.

Why is an advocacy movement critical?

Cancer advocacy is highlighted in Closing the Cancer Divide report (1) as an important component of any approach aimed at mobilizing stakeholders and constituencies and the effectiveness of movements led by patients and families is highlighted by Mukherjee (12) in his book the Emperor of all Maladies. Cancer survivors are a key to such movements but will require support to both focus their agenda on the strengthening of health systems (1) and to become organized. Cancer NGOs are critical to this.

Interestingly, though cervical cancer strategies have gained more traction within the health systems of LMICs with the adoption in most countries of some form of screening, this has not been reflected in a specific rise in related women’s advocacy movement. However, the opposite is true for breast cancer, where there is minimal government-led intervention but strong civil society movements. Many of the consumer initiatives in breast cancer are modelled on and mentored by global organizations. The low prevalence of cervical cancer in HICs mean that consumer initiatives are less evident and this may reduce the ability to support LMICs in this cancer. This perhaps suggests there would be merit in a broad focus on women’s cancers in supporting consumer initiatives in LMICs.

Internationally existing strong women’s networks in breast cancer are available to support and mentor those wanting to make a difference in their own country. For example, “WeCan” – Women’s Empowerment Cancer Advocacy Network based out of the United States (http://www. womenscanceradvocacy.net/en.html  accessed 5 February 2016) connects medical professionals, patients, advocates and policymakers seeking to change outcomes for women in developing countries. Starting an advocacy network can be readily supported by linkages through such networks who are willing to share their resources, experiences and expertise with others.

The power of patient stories to influence policymakers and investors is well recognized internationally as evidenced through the growth of organizations such as Patients Canada with a focus on using stories to make an impact

(http://www.patientscanada.ca/index.cfm?id=51196 accessed 5 February 2016). Patient stories also resonate with the media, opening up an important mechanism to raise public awareness and for the targeting of prevention, early detection and treatment messages and for encouraging investment in treatment. While in high-income countries there is a growing academic interest in using health experiences in policy (13) the genesis of this interest came from the many empowered patients who were motivated to change the systems of care.

Despite the lack of empirical evidence (14), the power of individuals motivated towards change cannot be under-estimated. In reflecting on the work of the then titled Susan G Komen Breast Cancer Foundation, Braun (15) outlined four key steps in creating an advocacy movement in breast cancer: priming the market where key survivors or family members began to talk openly about breast cancer; engaging consumers where activities focused on public awareness, breast health and information; political advocacy where networks of consumers became more organized and were able to begin influencing policy change in areas such as quality standards and research funding; and, finally becoming organized into structures such as the foundation that would provide an ongoing sound base to ensure that cancer control efforts in breast cancer remain strong. These steps provide a useful way for motivated individuals to consider the steps they might take in establishing an advocacy movement and platform. To date the Foundation has invested more than US$ 2.6 billion in breast cancer research, community outreach, advocacy and programmes in 30 countries contributing to an overall reduction in breast cancer deaths in the United States by 34% since 1990 (http://ww5.komen.org/pages/templates/twocolumn.aspx?pageid=12884903789 ).

Femama, a breast cancer network in Brazil, is a powerful example of a successful advocacy movement in a low-resource environment (16). Femama was established by Dr Maira Caleffi, a breast surgeon who on return from training overseas was motivated to do something about the alarming breast cancer mortality in Brazil. Her approach was centred on mobilizing civil society around the importance of early detection and public health policy. Since its inception in 2006 Femama – the Brazilian Federation of Philanthropic Breast Health Institutions – has become a powerful network of 57 NGOs across Brazil aimed at improving better access and quality in the diagnosis and treatment of breast cancer and impacting on the lives of over 1 million citizens. Femama has achieved important policy changes including legal requirements for treatment within 60 days of diagnosis and around provision of mammography screening, attesting to the critical contribution civil society cancer make.

It is clearly apparent that many cancer control initiatives in HICs and LMICs, particularly those in prevention and screening have been initiated by the not for profit sector or by civil society organizations. This is especially true in women’s cancers where visible action can be undertaken to alleviate the cancer burden and the suffering of cancer patients through prevention and early detection. In some instances, women themselves can precipitate and influence change more readily, especially in perception and willingness to undergo conventional therapy investigations and treatment, in the face of traditional and alternative therapies.

NGOs – a blueprint for action

To summarize our argument to date, it is that women’s cancers provide an ideal model to bring about a change in community attitudes through a joint focus on prevention/early detection and curative intent treatment investment. We also argue that the criticality of civil society in raising awareness and mobilizing change is well established in both HICs and in successful models arising in LMICs. We end here by outlining a set of potential focus points for existing or emerging NGOs wishing to take up this challenge.

Support the development of national cancer control plans – in the absence of government-led cancer control plans NGOs have a critical role to play in assessing local priorities and establishing the agenda for action.

Mobilising others – While most NGOs may not have the capacity to undertake the work associated with these plans they can utilize the plans to mobilize other civil society organizations and individuals towards a common agenda. Having clear goals is critical to mobilizing support. NGOs are also well placed to connect to potential supporters and mentors in other countries who have programmes able to be replicated or adapted for local use.

Coordinating activity – One of the critical challenges for LMICs with the rise of highly motivated individuals and organizations from HICs undertaking in-country projects is dealing with duplication, overlap, projects not aligned to national priorities and short-term engagement. NGOs have a potential role in helping to direct and coordinate the work of motivated groups, ensuring that short-term investment builds on prior investment and focuses on sustainability.

Resourcing skilled clinicians – A key to successful treatment initiatives is capacity building. While one approach is to send clinicians overseas for specialist training another is to attract skilled clinicians to lead services and capacity building locally. This has the advantage of being embedded in local health settings and local needs but often requires a salary advantage over what is possible in local institutions. NGOs are well placed to raise funds for such positions and to offer appointment approaches that do not cause equity issues for local staff.

Setting a quality agenda – NGOs have a critical role in defining the quality of service required and in supporting institutions to ensure that service availability is about more than access but also about ensuring best possible quality of care and outcomes.

Conclusion

The growing divide in health between LMICs and HICs is everyone’s problem. We must move beyond the inertia creating by the size of the problem to small steps towards reducing the inequity. Women’s cancers provide a unique opportunity to make advances through approaches aimed at mobilizing civil society and strengthening health systems in ways that will build the base for scaling up as resources are identified. The time to start is now.

References

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