Tuberculosis (TB) is one of the world’s oldest and deadliest infectious diseases, claiming over a million lives each year. Over the last few years, we have seen an increase in cases in the UK. However, as we explored in our Stigma Kills report, it is not just the bacterial infection which makes TB so lethal; it is also society’s response to it. At the 2023 UN High Level Meeting on TB, countries committed to ending the stigma surrounding TB.
On World Zero Stigma Day (21 July), it is important to share the experiences of TB survivors, to raise awareness of TB-related stigma, the impact it has on people and how we can start to tackle it.
Low levels of awareness of TB in both the public and medical communities mean that many people experience TB symptoms but are not aware of the severity of their illness. In most cases, people have many medical visits before they receive a TB diagnosis. This is only the start for people affected by TB. Once they receive a diagnosis, they are rarely informed of what TB is, the treatment options, side-effects from drugs, or what the diagnosis means for them. This lack of person-centred care is a common occurrence reported by TB survivors in many countries.
Caroline’s story:
Caroline attended doctor and hospital visits for many weeks when she was feeling very ill. She initially got a diagnosis of pneumonia. Caroline’s condition worsened, and she was eventually hospitalised. It was confirmed that she had TB and had been misdiagnosed.
“The doctors or the health professionals also need to be more aware or educated about TB. If the first doctor I went to realised that I had been coughing for some time, if he had just done a TB test and diagnosed me, then all these events that came later wouldn’t have come along”.
Caroline, TB survivor and advocate, Kenya
Alongside low levels of awareness of TB, people who are diagnosed with TB across the world face widespread stigma and discrimination. This may involve being isolated from their communities, or denied access to work, education, and even healthcare.
In many settings, TB is still seen as a ‘disease of the poor’ or wrongly associated with HIV, or with substance misuse. It is often perceived as the result of a ‘curse’. These stereotypes are damaging: they further perpetuate the cycle of discrimination and delay people’s access to life-saving treatments.
Stigma creates many obstacles to healthcare for people with TB. For example, someone with symptoms of TB may delay seeking a diagnosis and treatment for fear of being labelled, which then increases the risk of TB spreading further. Fear of public shame and mistreatment means people may also hide their diagnosis or abandon treatment. This is why the stigma associated with TB makes the disease so much more dangerous. It fuels misinformation, breaks trust in healthcare systems and undermines efforts to control TB through contact tracing and preventing new infections.
Fatima’s story:
Fatima was initially diagnosed with TB, which later turned out to be multidrug-resistant TB. Fatima was hospitalised and in an isolation room on her own for 50 days, and experienced stigma from healthcare workers and the public.
“I didn’t know about different forms of TB; I just knew there was TB. He [the doctor] didn’t explain what drug-resistant TB was. I didn’t know my body was immune to the medications or anything like that…..no one told me anything about the diagnosis, no one told my parents anything; I was just left in the room alone. I didn’t know if I was going to survive. I had times in that room where genuinely I thought I was going to die, like I wasn’t going to see anyone the next day”.
Fatima, TB survivor and advocate, UK
Despite the devastating impact of stigma on people with TB, efforts to reduce it are usually not given enough attention or funding in TB programmes. Ending TB requires strong engagement from affected communities and civil society, as recommended by the TB Political Declaration. The support and funding for civil society in TB programmes is lacking. The StopTB Partnership’s Challenge Facility for Civil Society (CFCS) was a funding mechanism that filled this gap. CFCS enabled affected communities and civil society to support national TB programmes, increasing awareness, dispelling myths, and empowering communities to understand what TB is and how to manage it. With the recent cuts to TB funding from the US administration, CFCS funding is now on hold until further notice. The ability to continue work on stigma reduction strategies is now at risk.
With reduced space for civil society and health misinformation, the need for clear information and awareness on TB is vital for affected communities to reduce the stigma associated with TB and to protect human rights.
In 2024, Results UK interviewed six remarkable people who had experienced TB, who are now advocates for change and leaders to end the TB epidemic. They shared their stories to help change the public perception of TB, de-stigmatise the condition, and promote person-centred, gender and rights-responsive care and treatment. Our Champions of Change report calls for training for healthcare professionals on stigma and TB-appropriate language and awareness-raising campaigns with the public on TB symptoms and where to get help. In addition, the report calls for increased investment to end TB in line with the globally agreed goals.
Commitments from governments are important in ending stigma, but so are the actions of individuals. We can all make a difference. On Zero Stigma Day, increase your awareness of TB-related stigma by reading the stories of TB survivors, and how they managed their illness and learned to advocate for themselves when no one else would, in doing so, becoming beacons of hope for other people affected by TB.