Opinion: Quality Tuberculosis care starts with people
The world is seeing tuberculosis (TB) deaths increase for the first time in over a decade, according to the World Health Organization’s Global TB Report 2021. In 2020, 1.5 million people died of TB and the report estimates that almost 10 million people developed TB. Of these, only 5.8 million people were diagnosed and reported, increasing the gap of people missing TB diagnosis and treatment and risking further spread of the disease.
The trend is expected to worsen in 2021 and 2022, The New York Times noted, fuelled by COVID-19 outbreaks worsened by lack of access to vaccines in many low- and middle-income countries. The COVID-19 pandemic, combined with low political will and appallingly low levels of funding has reversed hard-fought gains in the fight against TB, an age-old disease. People and communities affected by TB have long deserved better and are voicing their needs loud and clear. We need quality TB care now more than ever before.
Access to quality care
Access and accessibility are important aspects of quality TB care. One can have access to the international standards of TB care through a nearby healthcare facility, however, due to the high TB burden and barriers at the health system level, often a lack of ‘human resources, material resources, service implementation, and service coordination’, some healthcare facilities struggle to provide quality care for people with TB.
“I really hope that one day every hospital has a committee taskforce that consists of patients and survivors to advocate for treatments with less duration, with more human-centered care. For me, quality TB care is a humanised and dignified TB care with empowerment and agency of the patients and survivors at the center of everything.” – Handaa Enkh- Amgalan, TB survivor and advocate
Further challenges include facilities only being open at specific times, being far away from people’s homes, and not catering for people with inflexible working hours. Sometimes the financial burden of seeing TB care, such as the costly consultation fees in the private sector or transport costs, pushes people with TB into catastrophic expenditures. TB stigma also hinders some from going to health facilities for the necessary treatment they require (For more see the E-book on Quality of Tuberculosis care, 2021).
Access to high-quality healthcare is a human right for all – where the needs, preferences, and experiences of those seeking treatment along with their right to be treated with respect are considered – as affirmed by the UN Committee on Economic, Social and Cultural Rights in 2000.
James Malar, Community, Rights, and Gender Advisor from the Stop TB Partnership, recently said online: “TB quality of care is 100% a discussion about human rights. Irrespective of where people live, or how they identify they have a right to the best quality drugs and diagnostics, free from stigma and discrimination.”
Human rights should be recognised in all TB policies, including enabling each person to know their TB status and to provide them with affordable, accessible, and equitable access to services and care. As argued in a Lancet Commission on Global Health, ensuring quality TB care further involves ‘thorough assessment, detection of asymptomatic and co-existing conditions, accurate diagnosis, appropriate and timely treatment, referral when needed for hospital care and surgery, and the ability to follow the patient and adjust the treatment course as needed.
Cost of poor quality care
The Lancet Global Health Commission on High-Quality Health Systems reported that about 50% of TB-related deaths are the result of poor quality of care. Inadequate quality of care causes people who are sick to lose trust in the healthcare system resulting in prolonged illness and suffering.
Data from low-middle income countries indicates that one in three people have negative experiences with the healthcare system, including poor communication, staff shortages, poor infection control measures, and long waiting hours.
TB care needs to be strengthened to meet each person’s needs and to consider gender roles and address gender inequalities. TB care should ensure that people’s roles in their daily lives are considered to design inclusive health services based on their specific needs. A study done in Malawi on how people with TB symptoms look for care illustrated how men supposedly conceal illness or suppress symptoms based on their socially defined roles. Furthermore, the study revealed how seeking healthcare and being investigated caused anxieties about possibly having something serious and losing control of one’s fate to the medical system. Voices from global health practitioners, policymakers, and perspectives from TB-affected communities should help find solutions to this problem – considering the impact that gender has on the way people experience care.
Jeremiah Chikovore, a sociologist at the Human Sciences Research Council in South Africa and founder & a director of SSHIFTB (Social Sciences and Health Innovation for Tuberculosis) explains, “As part of enhancing the quality of TB care, it is essential to critically reflect on what education and information given to patients and communities can achieve. Teaching communities [about] the need to be investigated when coughing, or even explaining tuberculosis management algorithms, for example, can remain inadequate without addressing structural reasons for tensions communities and patients have about healthcare. Ultimately, a pertinent question is: Whose standpoint gets privileged when ‘patient needs’ are talked about? The voices of patients and communities should be given prominence.”
In the world’s highest TB burden country, India, 50-70% of people with TB first seek care in the private sector. It is therefore critical to better the access of people with TB through public-private partnerships tailored to the local context.
Andrew McDowell, an Assistant Professor in the Department of Anthropology at Tulane University, advocates for engagement with private general practitioners to determine what they need to provide person-centered care at community-level. He described the impact of a project in Mumbai, where general practitioners were supported to link patients with TB to chest physicians, also providing free X-rays, blood tests, and GeneXpert TB diagnosis, it resulted in over 100 patients diagnosed with TB in just three months
Test and treat
To reach people with TB and link them to high-quality TB care, it is time to implement the Test & Treat approach to test all who were in close contact with the person with TB and provide them with TB treatment or TB preventive therapy.
TB testing should be accessible to all which requires expansion of testing services. This could be achieved by offering TB testing during evenings and weekends when people are not at work, via home-based testing by community health workers, or using remote collection and drop-off for patients testing themselves. There is an urgent need to ensure equitable access and universal uptake of TB drugs, diagnostics, and vaccines.
To put an end to TB being a leading infectious disease killer globally, we need to make sure the voices of people affected by TB are at the core of developing person-centered quality TB care, free from stigma and discrimination.
*Human, Schoeman and van der Westhuizen are with TB Proof. Heitkamp, Clinton, and Singh are with TB PPM Learning Network (Canada). Daftary is at York University (Canada) and with SSHIFTB. Chavan Is an independent Public Health Professional in Mumbai (India). Chikovore is with SSHIFTB and the Human Sciences Research Council. Chen is with SSHIFTB.
*Quotes were obtained from a TB PPM/ TB Proof Quality of Care Twitter chat and TB PPM/ SSHIFTB webinar which were held on 1 September and 9 September 2021 respectively. To view the Twitter chat report, click here.
**To watch the TB PPM/ SSHIFTB webinar on person-centered care, click here.
The full webinar report can be accessed here.