Tackling the stigma surrounding TB and HIV is crucial for improving health outcomes in South Africa. By breaking down these barriers, we can empower communities, enhance treatment access, and save more lives.
Social stigma surrounding tuberculosis and HIV undermines public health efforts. Photo: THINK
In South Africa, the fight against tuberculosis (TB) and HIV is not just a battle against disease. It is a battle against stigma. Despite significant advancements in medical treatment, the social stigma surrounding these conditions continue to undermine public health efforts. This stigma, often unspoken but deeply embedded in society, is a significant barrier to care and exacerbates the heavy burden of these diseases.
HIV and TB stigma at home and work
TB and HIV are among the most pressing public health challenges in South Africa. Despite considerable efforts to curb these diseases, such as shortened treatment periods for TB, the country remains one of the hardest hit globally. There is also a high comorbidity of TB and HIV, as people with HIV are 29 times more likely to develop TB than those who are HIV-negative.
Stigma persists as a powerful force, deterring people from seeking care. The stigma attached to TB and HIV is pervasive, influencing every aspect of life for those affected, from their ability to access healthcare to their social interactions at home and work.
My colleague, Dr Suzanne Staples, THINK’s chief science officer in South Africa, has experienced stigma not just keeping people from accessing care, but keeping them from living their lives. We see patients who delay treatment and avoid discussing their diagnosis with even close family members because of fear. This fear doesn’t just cost lives, it destroys the quality of life for countless others.
The stigma surrounding TB and HIV does not stop at the clinic door. It permeates every aspect of a person’s life, including their work and home environments. Oftentimes, employers are not very well informed. The moment someone discloses that they have TB, there is immediate concern. This concern often leads to unfair treatment or even dismissal, as employers fear the implications of bringing an employee with TB back into the workplace, despite their non-infectious status post-treatment.
The socioeconomic impact of HIV and TB is devastating, especially when workplace stigma leads to job loss. Losing employment can drive people and their families into poverty, worsening their mental health and deepening the struggle to meet basic needs. This cycle of stigma, unemployment, and declining wellbeing harms not just individuals, but entire communities.
The stigma can be even more severe at home, where family members may distance themselves out of fear. My colleague, Munira Khan, THINK’s head of research and clinical trials in South Africa, recounts a particularly heartbreaking case where a TB patient was forced to live outside their family home during winter, deprived of food and security. Unfortunately, there is little we can do in terms of intervention because social services are not the strongest in finding placement for patients who have TB, highlighting the limitations of support systems in these situations.
Perpetuating a cycle of illness and fear
Moreover, the psychological toll of stigma cannot be underestimated. People who internalise the stigma surrounding TB and HIV may experience depression, anxiety, and social isolation. These mental health challenges further complicate treatment adherence, as people may turn to substance abuse or other harmful behaviours to cope. The stigma thus becomes a self-fulfilling prophecy where fear of the disease leads to actions that exacerbate the very conditions that make TB and HIV so deadly.
Indeed, the health risks associated with TB and HIV stigma are severe. Delayed diagnosis and treatment, often caused by fear of stigmatisation, lead to more advanced disease states and increased transmission within communities. TB is highly infectious and thrives in conditions where people avoid or delay seeking medical attention. The longer someone with TB remains untreated, the higher the likelihood of spreading the disease to others, often within their own household or community.
This perpetuates a cycle of illness and fear that is difficult to break. When our healthcare professionals talk to patients, they hear the same stories over and over. People impacted by TB and HIV feel ashamed, isolated, and unsupported. This emotional and mental burden directly impacts their ability to stick to treatment regimens, which worsens their health outcomes, increases the spread of the diseases, and deepens health inequalities. It is a vicious cycle that we must break.
Breaking the cycle of HIV and TB stigma
Education can help to break down stigma and dispel myths about tuberculosis and HIV. Photo: THINK
To break this cycle, the stigma must be addressed at multiple levels. Education is crucial. At the community level, there needs to be a concerted effort to demystify TB and HIV and dispel the myths that fuel the stigma. Educating people at the community level is crucial. Suzanne often shares an example in her educational work, explaining that if people understand that TB is not spread from sharing utensils, then there is no need to ostracise a family member. This basic understanding, as one example, can significantly reduce the stigma within communities.
It is important to emphasise that TB and HIV are preventable and treatable and that people infected lead long, productive lives when they adhere to treatment. This requires not only public health campaigns, but grassroots efforts that involve community leaders and influencers who can shift perceptions and normalise conversations around these diseases.
By fostering a culture of compassion and understanding within healthcare facilities, we can reduce the stigma that patients feel and encourage earlier, more consistent engagement with treatment.
Healthcare worker training is also essential. Those on the front lines of care must be equipped to handle TB and HIV patients with the empathy and respect they deserve. Healthcare providers are often the first point of contact for patients, and their attitudes can significantly impact a patient’s willingness to seek and sustain their care. By fostering a culture of compassion and understanding within healthcare facilities, we can reduce the stigma that patients feel and encourage earlier, more consistent engagement with treatment.
Policy interventions are needed to protect the rights of those living with TB and HIV. Legislation that ensures workplace protections and prevents discrimination is crucial. Employers must be educated about TB and HIV so they can provide supportive environments for employees undergoing treatment, rather than contributing to the stigma that drives them away from care and exacerbates inequalities.
A global issue demanding a shared approach
The fight against TB and HIV cannot be won by the healthcare system alone. It is a global issue that demands a shared approach. Governments, NGOs, community groups, and individuals all have a role to play in dismantling the stigma associated with these diseases. International partnerships and funding are essential for sustained public health campaigns and for the development of interventions.
This shared responsibility extends to the global health community, which must prioritise stigma reduction in its strategies. The burden of TB and HIV is felt most acutely in countries like South Africa, but the implications are global. Infectious diseases do not respect borders, and the stigma that exacerbates these conditions can have ripple effects far beyond impacted communities.
We cannot view this issue as one of a single country or continent. Stigma-driven delays in care and treatment fuel the global spread of TB and HIV. This is a global health crisis, and we all have a role to play in addressing it.
It is time for decisive action to combat the stigma that fuels the TB and HIV crises in South Africa. This is not just a medical issue; it is a social justice issue. By addressing stigma, we can not only improve health outcomes for people living with TB and HIV but also prevent the spread of these diseases, ultimately saving lives.
We must confront stigma with the same urgency and determination that we bring to the fight against the diseases themselves.
The time to act is now. We must confront stigma with the same urgency and determination that we bring to the fight against the diseases themselves. Only then can we hope to turn the tide against TB and HIV in South Africa and beyond.
The opinions expressed are those of the author and do not necessarily reflect the position of Re:solve Global Health.
Michaela Higgins Sørensen is a half-Danish, half-South African communications professional with a background in international development. She is the communications officer at THINK, a non-profit organisation working to improve the quality of life of people affected by TB and HIV in South Africa and around the world.
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