Publication Year 28 May 2024

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“Being treated for multidrug-resistant TB (MDR-TB) was the hardest and loneliest time of my life. I am a registered nurse and was expected to know everything about this terrible disease and its management. I received no education about the disease or the medication that I was to take. I was shunned when I went to the clinic for check-ups, maybe because I was a health worker. I was terrified about the lack of infection control measures at the health facilities – there was no proper ventilation, and in the box marked “take a mask if you are coughing” there were never any masks available. I felt so ill on the medication, I had no energy, I felt nauseated most of the time and I could not sleep at night. I became deaf with the injections. This was ten years ago. At that time there was no manual available to assist healthcare workers to usefully care for the psychosocial needs of those affected with tuberculosis. I wish there had been as my journey from diagnosis to successful treatment of this terrible disease might have been a lot easier”.
This quote from Trisha Bond, a registered nurse who needed a partial lung resection after falling ill with MDR-TB in South Africa, speaks volumes.
Tuberculosis can be traced in humans back to 6000 BC. In classical times, in the medieval ages and the pre-industrial revolution the disease was known under various names “phthisis”, “scrofula” and “consumption”. During the Industrial Revolution and in Europe particularly, TB rates reached staggering levels. The disease became known as the White Plague.
Then we began to get progress. Between 1880 and 1970, we learnt what causes TB, we developed appropriate tests to diagnose it and we discovered and produced the drugs to successfully treat it. As a result of these discoveries, in the late 1970s and 1980s many experts came to regard TB as a disease of the past, to be confined to the history books. How complacent and mistaken we were.
TB remains a global public health threat and the top infectious disease killer worldwide. Every year, 10 million people become ill with TB – half a million of whom develop difficult-to-treat drug-resistant disease – and nearly 1.5 million people die as a result. We desperately want to end the scourge of TB and have pledged to do so by the year 2030. And as a result, we have become obsessed with targets, interim milestones and large numbers. The UN General Assembly highlevel meeting on TB, held in September 2018, committed countries to successfully diagnose and treat 40 million people with TB and give TB preventive therapy to 1213 30 million people between 2018 and 2022. These are laudable aspirations, but we will only succeed in our goals if each individual person with TB can take daily uninterrupted medication until the end of their course of treatment. And herein lies the challenge. A course of treatment for drug-susceptible TB lasts for six months while for drug-resistant TB the course can last from nine to 24 months. The medications are unpleasant to take. The journey ahead for the affected individual, already weakened by disease, is daunting and is likely to only be completed if there is good support at hand.
So here is where this new manual on psychosocial counselling and treatment adherence support comes in. The manual focuses on the needs of people affected by TB, and their families – providing sound guidance on delivering social and economic assistance and psychological support. It does this through narrative, illustrative tables and figures, case examples and using consolidated learning activities at the end of each chapter. It is comprehensive in its scope covering issues such as stress, stigma, discrimination, barriers to diagnosis and barriers to treatment, and it addresses many of the common co-morbidities that are associated with TB. The manual helps to strengthen health and care workers’ interactions with affected people through guided conversations and it places people affected by TB at the centre of their care. One of the centrepieces is a presentation and discussion of the collaborative multidisciplinary approach and the important role of CSOs in supporting people before and after the diagnosis of TB and during treatment.
This manual is primarily for trained health workers, social workers and care workers who can use its contents as a self-study tool and incorporate its guidance into practice. The manual can also be used to provide training and guidance to both lay and professional TB treatment adherence workers and it can serve as a reference tool for TB clinicians, activists, programme managers and policy makers so that they can understand the sort of challenges that are faced by individuals affected by TB and can appreciate the support that can make a difference.
I commend TB Alert for having the vision to write this much-needed manual. I strongly recommend that it is widely read and its contents digested, so that people with TB can feel and embrace a strong ring of support as they embark on their difficult yet life-saving treatment regimens