South Africa (SA) has one of the highest tuberculosis (TB) incidence rates in the world with a high HIV/TB co-infection rate and a large drug-resistant TB burden. In 2016, treatment success rate was only 83% for drug-sensitive TB, 52% for multidrug-resistant (MDR) TB and 28% for extensively drug-resistant tuberculosis (XDR) TB. TB remains the leading cause of death since 2007.
Prevailing TB stigma is a major contributor to diagnostic delay and treatment interruption. Although TB-related stigma is well documented, few interventions have been attempted to address stigma in vulnerable populations.
Unmask Stigma, an international awareness and education campaign, aims to unmask (expose the true character or hidden truth) the stigma (a set of negative and often unfair beliefs about a particular circumstance, quality or person) surrounding tuberculosis.
The motivation for the campaign was based on personal experiences of health care workers and TB sufferers faced with different scenarios relating to stigma. A few examples of stigma:
- A medical student wrote to TB Proof questioning the sense of complacency that reigns in academic hospitals fueled by unintentional, yet deeply pervasive stigma: “The attitude of doctors and nurses towards wearing masks and taking precautions when dealing with patients with such disease is uncomfortably relaxed. If one does wear an N95 mask you are glared at by nurses and doctors alike…Why do we knowingly expose ourselves and our colleagues to this deadly disease?”
- A retired nurse commented in response to a story of a doctor that contracted MDR TB: “I worked as a nurse in the public sector for 52 years with very severe TB cases and I know of only one of my colleagues that contracted TB… What was the reason that this doctor’s resistance was so low? People working in health care should know how to look after their own health through good life style habits.”
- A man from Pakistan was rejected by his family after he got TB and was told he will never find a wife because of TB.
- A young doctor lost her hearing after her physician ignored her concerns, telling her that her hearing loss was imagined.
- A woman walked to the other side of town every day to avoid people from her local neighbourhood seeing her receiving TB treatment.
- A nurse in London was frustrated that her two Asian patients of the same cultural background refused to be introduced to each other for emotional support, because of their fear of stigmatization.
- A doctor from Malaysia sent an email to TB Proof in desperation, asking, “Why did I get XDR TB? What did I do wrong?”
Such accounts motivated the TB Proof community to start fighting stigma. By revealing and subsequently addressing stigma we encourage health care workers to protect themselves. We encourage TB patients not to be ashamed after contracting this disease, or about having to wear masks to protect others, and to be proud of surviving TB. By sharing TB survivors’ stories, we encourage patients to complete their treatment and live normal lives after being cured from TB.
The Unmask Stigma Initiative was launched in 2014 with the support of Dr Mario Raviglione, head of the World Health Organization’s Global TB Programme. This initiative aims to address TB stigma in communities through education, sharing of personal stories and social mobilization. Annually on World TB Day, participants of the Unmask Stigma campaign are asked to post a picture of themselves wearing a mask on social media to show solidarity with patients; the intention is to effect a change in society’s perception of vulnerable groups affected by TB, including health care workers and people living with HIV.
The Unmask Stigma website was reviewed by a WHO ethics expert. Advocacy materials are distributed to partners, including pamphlets on TB symptoms, prevention and stigma. Several short-films about local TB survivors were developed in collaboration with partners and are shown on various platforms. Collaborations have been formed between local and international advocacy groups, universities, non-profit organizations, hospitals and clinics.
To join the initiative or read more, visit the Unmask Stigma website.