Combating stigma and discrimination to promote the treatment of TB patients

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Extract from the article: The Knowledge, Attitudes, Practices and Beliefs (KAPB) survey carried out in Togo in 2012 on tuberculosis confirmed that powerful metaphors associating tuberculosis with death, guilt and punishment, crime, horror and "others" built and legitimised th

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The Knowledge, Attitudes, Practices and Beliefs (KAPB) survey carried out in Togo in 2012 on tuberculosis confirmed that powerful metaphors associating tuberculosis with death, guilt and punishment, crime, horror and "others" built and legitimised the stigma established at the start of the epidemic. The use of this language can be explained by another aspect that underpins and reinforces the stigmatisation process: people are afraid of fatal diseases. This is the case of the Ewe language, spoken mainly in Togo, "YOME KPE", which literally means "the cough of death".  The stigma is partly based on people's fear of the consequences of TB infection, particularly the high case-fatality rates (especially when treatment is not widely available), the fear of transmission or of seeing someone with advanced TB decline rapidly.

In Togo, rejection, stigmatisation, discrimination and marginalisation of people with tuberculosis are still a reality. And yet, like many other diseases, tuberculosis can be treated and even cured free of charge.

At what levels of society is discrimination associated with tuberculosis?

At several levels: First of all, in the family or community context, what is sometimes described as "effective" stigmatisation: these are acts which push individuals to do things, or forget to do things, which put others in danger or deny them services or rights. Examples of this form of discrimination against people with tuberculosis include: ostracism; shunning the person or avoiding contact with them on a daily basis; verbal harassment; physical violence; discrediting and verbal reproaches; gossip. Secondly, in the institutional environment, particularly in the workplace, healthcare services, prisons, educational establishments and social centres. This discrimination translates actual stigmatisation into institutional policies and practices that discriminate against people with TB, or on the contrary, into the absence of anti-discrimination policies or redress procedures. Examples of this form of discrimination against people with TB include: health care services, workplaces, schools and learning centres, prisons, families.

At national level, discrimination may reflect stigmatisation that has been officially sanctioned or legitimised by laws and policies that have already been put in place and promulgated in the form of practices and procedures. This can further reinforce the stigmatisation of people with TB and therefore legitimise discrimination.In many countries, laws have been enacted to restrict the rights of people and groups affected by TB.These include compulsory screening and testing of groups and individuals; prohibition of recruitment of cured TB patients for certain positions and types of employment; compulsory isolation, detention and medical examination and treatment of infected persons; restrictions on foreign travel and migration, including TB testing for persons applying for work permits abroad, and deportation of foreigners with TB.Discrimination can occur by omission, for example when laws, policies and procedures to redress and safeguard the rights of people with cured TB are not applied or are lacking.

Who are the most stigmatised people when it comes to tuberculosis?

 Tuberculosis is more common among people facing social and economic inequalities, particularly those living in poverty and overcrowded conditions (prison environments) and people living with HIV.

What are the possible consequences of stigma and discrimination?

The consequences of the stigma associated with tuberculosis for patients and communities can be: Social: for example, isolation and loss of opportunities for family support.By blaming particular individuals or groups who are 'different', others may avoid recognising their own risk, confronting the problem and taking care of those affected. Portrayals of people with TB in the media and on television that suggest it is a 'disease of poverty', a 'disease of infidelity', a 'superstitious disease' or a misinterpretation of the link with HIV can reinforce stigma. This last idea is reinforced by the concept of sin in religious belief, which also supports and reinforces the idea that HIV infection is a punishment for deviant behaviour.

There are economic consequences: for example, the loss of a job or paid leave, or refusal to be taken back on after recovering from tuberculosis. There are also medical consequences: many patients who appear to be carriers of the germ on the basis of the few symptoms detected reject the disease and do not go to the clinic so as not to become suspects, also, for example, unfavourable health outcomes, including death, and an obstacle to the recruitment of health workers in the community). Stigma and discrimination therefore prevent people from getting tested, recognising that they are ill, and seeking care and psychosocial support. The lack of any significant reduction in the incidence of tuberculosis over the past decade reflects our inability to tackle its underlying social causes, including stigma and discrimination against people with the disease.

Is the NTP faced with this scourge of stigmatisation and discrimination of people with the disease?

The June 2012 national survey on knowledge, attitudes and practices relating to tuberculosis in Togo reveals that patients "complain of being isolated, marginalised or arousing feelings of mistrust.A minority choose voluntary isolation.  Stigmatising patients and refusing to sleep with them are negative reactions. In all regions, and more particularly in Lomé Commune and the Maritime region, the proportion of people who say they refuse to sleep with a tuberculosis patient is low.  Attitudes such as abandoning the patient or indifference represent very low proportions overall.  This represents a major advance in people's attitudes to tuberculosis. But this progress must be maintained.

These representations can lead to a defeatist attitude towards illness, mistrust and rejection of the patient. On the one hand, believing that the disease inevitably kills is an attitude that does not encourage dynamic action to combat it.It will be essential to use communication messages to try to reverse this negative attitude. On the other hand, there is a lack of knowledge or awareness of the disease.The public needs to be properly informed, with a clear distinction drawn between the real causes and the risky behaviour that encourages contagion. Clearly, if two smokers exchange cigarette butts, for example, or two lovers kiss and breathe together when one of them has tuberculosis, the risk of contagion is very high, and in some cases unavoidable.However, tobacco, alcohol and adultery are in no way factors that cause tuberculosis.

What has been done to combat the stigmatisation of TB patients?

At a global level, the Dahdaleh Institute for Global Health Research at York University in Toronto has spent the last 15 years studying and addressing the healthcare drivers of TB, in particular the stigma of TB and its impact on treatment adherence among people with drug-resistant disease and HIV co-morbidity.Much of her research is based in South Africa, where she draws on the perspectives of patients, providers and the community to help develop person-centred approaches to TB and TB-HIV care.

In Togo, awareness campaigns are also aimed at providers and the community.Providers must be ethical and deontological so as not to divulge information about a patient to anyone.The community is made aware of these issues through discussion forums and other means.  The patient's community is a source of healing. The work of associations and NGOs helps to raise awareness of illnesses and health in general. Key messages: « You can eat with a TB patient who is taking his medication without being contaminated » « After two weeks of taking medication correctly, the risk of contamination by the patient decreases. » « We need to give our TB patients moral and material support, so that they can quickly regain their health. » « When a patient is on anti-tuberculosis treatment, they must not miss any medical appointments. Their lives and the lives of others depend on it. »

Pour les patients qui sont des fonctionnaires ou des salariés, ils ont le droit d’être protégé par leur hiérarchie et d’être soutenu. Après guérison, ils doivent regagner leur poste. On ne doit pas les licenciés ou les pénalisé du fait qu’ils ont fait la TB. En bref, lutter contre la stigmatisation, un déterminant social incontrôlé de la tuberculose.

Source : PNLT