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CFSC Analysis and Opinion: Assessing Davos and the Global TB Campaign by James Deane

For the first time in an initiative of its kind, the Stop Tuberculosis Partnership has adopted a communication approach that blends behaviour and social change communication strategies, social mobilisation and advocacy into a single coherent framework of action. James Deane, the Consortium's managing director for strategy and one of the architects of the Stop TB integrated communication plan, explains why this approach is critical.

Battling TB: Communication Key in New Initiative

The annual gathering of the World Economic Summit in Davos, Switzerland always makes headlines worldwide. The gratifying surprise this year was that the biggest headlines went to one of the most neglected and unfashionable problems facing humanity: TB.

Bill Gates announced that funding from his foundation would triple from $300 million to $900 million to TB research by 2015. He, together with President Olusegun Obasanjo of Nigeria and British Chancellor Gordon Brown joined Dr Marcos Espinal, executive secretary of the Stop TB Partnership, in calling for an impressive $31 billion of funding to fight TB over the next 10 years and for the G-8 and the rest of the global community to make combating the epidemic a top priority.

Behind the headlines, however, was a remarkable partnership"”the Stop TB Partnership, hosted by the World Health Organization (WHO)"”bringing together a broad range of disciplines and sectors to develop an unprecedented, ambitious and coherent 10-year strategy for TB control. The role of advocacy, communication and social mobilisation has been recognised as having an integral part of that strategy"”and of that partnership"”arguably for the first time in an initiative of this kind.

The Communication for Social Change Consortium has been playing an important catalytic role, working with the Stop TB Partnership in developing and prioritising communication issues within it. The result is a detailed, 10-year, $2.8 billion strategy for advocacy, communication and social mobilisation that blends behaviour and social change communication strategies, social mobilisation and advocacy into a single coherent framework of action.

Almost one-third of the world's people carry the TB bacillus, making it the most pervasive of public health problems. While the vast majority of these don't actually contract the disease, the disease kills almost two million people a year worldwide, and it debilitates many millions more. Nine million people develop the disease each year. TB, unlike HIV, is entirely curable, but incidents of drug resistant forms of the disease are increasing rapidly. TB is a major cause of death in people who are HIV positive, and a deadly connection has been established, as the growing prevalence of HIV also fosters the spread of TB. TB is a disease predominantly affecting people living in poor countries.

The 10-year TB control strategy is unprecedented in its ambition and its scope and is designed to fulfil one of the key Millennium Development Goals set by the United Nations, namely to have "halted by 2015 and begun to reverse the incidence of tuberculosis."¯ Key objectives include:

  • Improve treatment access: prevent 14 million tuberculosis deaths and provide treatment to 50 million people.
  • New drugs: develop and distribute the first new tuberculosis treatment regimen in nearly 40 years.
  • New vaccine: develop a safe and affordable vaccine to improve upon the existing vaccine, which has been in use since the early 1900s.
  • New diagnostics: develop efficient, effective and affordable diagnostic tests for tuberculosis"”the first in more than a century

These will be achieved only with effective communication strategies, including communication strategies to help empower people with TB. Patient empowerment is a major component of the strategy, and communication in all its forms has become a far more predominant strand of the global TB containment strategy than has been the case in the past.

In 2005, a new global Advocacy, Communication and Social Mobilisation (ACSM) group was formed as part of the Stop TB Global Partnership, and the Communication for Social Change Consortium was asked to facilitate a strategic development process on behalf of the group to determine the role of communication at country level in the 10-year strategy. The process, which drew on a very wide range of communication organisations and experts, national TB programme managers, doctors, academics and policymakers, was developed under the stewardship of Dr Roberto Tapia, vice minister for health of Mexico, and organized by the Stop TB Partnership.

The strategy focused on how communication could contribute to meeting four fundamental challenges in TB control:

  • Improving case detection and adherence to treatment;
  • Combating stigma and discrimination;
  • Empowering people affected by TB; and
  • Mobilising political commitment and resources for TB.

Improving case detection

A critical component of any TB strategy is finding and encouraging people with the disease to come forward for treatment. This is a particular challenge because TB disproportionately affects the poor, who have less access to TB services, less capacity and time to take advantage of such services and, crucially, often a lack of knowledge of the symptoms and risks of TB. A major component of any communication strategy on TB is a relatively traditional behavioural one of encouraging those who have a cough for two weeks to seek treatment and to encourage those taking treatment to adhere to it.

In the past, TB programmes have been seriously weakened without a communication focus, and the link between a lack of communication and poor case detection has been repeatedly demonstrated. Studies, including from Ethiopia, India, Mexico, Nigeria, Pakistan and Thailand, have shown that patients with little knowledge about the symptoms of TB are more likely to postpone seeking care and getting tested. Studies in Tanzania found that in some communities patients with little knowledge are more likely to visit traditional healers and pharmacists rather than providers of Directly Observed Treatment Short-course (DOTS) services, the backbone treatment regimen for TB control. TB control programmes do a better job at holding, rather than finding, cases and increasing case detection.

Combating Stigma

There is also an explicit emphasis within the ACSM strategy that making people aware of TB symptoms, and of the availability of TB services, is not enough to increase case detection. Other factors, and particularly the high levels of stigma associated with TB -- exacerbated by factors of discrimination, marginalisation and poverty -- prevent people from accessing TB services.

TB-related stigma and discrimination are evident in every country and region of the world. Stigma is harmful, both in itself, since it can lead to feelings of shame, guilt and isolation of people with TB, and also because negative thoughts often lead individuals to do things, or omit to do things, that harm others or deny them services or entitlements.

Health workers are often a key source of stigmatising behaviour through their treatment of people with TB; hospital or prison staff may deny health services to a person with TB. Employers may terminate a worker on the grounds of his or her actual, or presumed, TB-positive status. Families and communities may reject and ostracize those living, or believed to be living, with TB.

Studies repeatedly demonstrate that stigma deters people from seeking care and diagnosis and that women bear the highest burden of stigmatising behaviours. Stigma and discrimination are triggered by many forces, including lack of understanding of the disease, myths about how TB is transmitted, prejudice, lack of access to diagnosis and treatment, irresponsible media reporting, the link between HIV/AIDS and TB, and fears relating to illness and death.

Stigma results in part from misinformation or a lack of information. Misinformation about what causes TB, how it is transmitted and whether it can be cured is linked to the stigmatisation of people with TB. However, stigma has its roots not only in a lack of information but also in deep-seated social mores and structures. Stigma particularly affects women because social pressures and status often make them especially vulnerable to marginalisation and discrimination with the consequences of contracting TB, sometimes leading to divorce, desertion and separation from their children.

The historically well-documented stigma of TB as a "disease of the poor,"¯ persists and has been compounded more recently by the link with HIV/AIDS. HIV/AIDS stigma, which affects TB patients, has been shown in high HIV-prevalent communities, including in Ethiopia, Pakistan and Thailand demonstrating that TB patients with HIV suffer a double stigma.

Any ACSM strategy to confront these issues has to focus on social as well as individual behavioural challenges. Advocacy, communication and social mobilisation programmes are essential in empowering people with, or affected by, TB to take community action to confront stigma, and to educate broader communities to reduce stigma. The 10-year plan recognises explicitly that any communication strategy designed to combat TB needs to support both a process of social change in society to tackle stigma and marginalisation of people with TB, together with a process of behaviour change to persuade people to seek treatment.

Empowering People: The Heart of the Response

ACSM programming must combat insufficient inclusion of people most affected by TB and related diseases in the design, planning and implementation of TB-control strategies. An important lesson from other health crises, particularly HIV/AIDS, is that the greater inclusion of those most affected in the response to these crises, the greater the impact such responses are likely to achieve and sustain.

Communication strategies have much to offer in this regard, both in terms of advocacy interventions and how different communication actions/programmes can enable people with, and affected by, TB to have their voices heard in the public domain.

Contemporary health communication, and particularly communication for social change strategies, are increasingly concerned with providing spaces and channels where people affected by health issues can make their voices heard, engage in dialogue and debate and achieve increased visibility as people with important perspectives that deserve attention. This is a critical component of the ACSM strategy.

Community empowerment has also been shown to be critical to successful implementation of DOTS programmes, and some of the most successful examples of TB programming have been rooted in strategies with a strong community empowerment component, particularly in countries like Mexico and Bangladesh.

Securing Political Commitment

Political commitment is a crucial element of DOTS. Lack of political will has hampered the development of appropriate TB-control policies and the successful implementation of TB policies at the central, district and local levels. Even when good TB policies exist, there is often a gap between the policies and the programmes on the ground. Advocacy is a major component of communication for social change.

  • Experience suggests that TB-control services are negatively affected without strong commitment from a variety of sectors of society, particularly decision-makers and influential political and community leaders. Challenges in relation to insufficient political commitment can include insufficient resources"”both human and financial, lack of local ownership and buy-in of TB programmes, low level knowledge among policymakers and other stakeholders about TB as well as many other factors. Advocacy, both at the national and global level, is a growing element of the overall global TB strategy at the global and national level. A separate strategic process has been developed for global advocacy on TB.

The role of communication for development in general, and communication for social change in particular, has become increasingly recognized as a mainstream, central pillar of effective interventions in some of the most pressing health and development issues of our time.

Clearly, the role of communication in TB is this most recent"”and particularly compelling"”example of that trend.

Further reading:

Behavioural Barriers in Tuberculosis Control: a Literature Review, Silvio Waisbord, The CHANGE Project/ AED, Draft document, 2005

A Human Rights Approach to TB: Stop TB Guidelines for Social Mobilisation, WHO, 2001.

Missing the Message: 20 Years of Learning From HIV/AIDS, T Scalway, Panos, 2002.

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