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Sound the alarm: We are failing to meet targets to beat TB but Khayelitsha’s care model during COVID-19 shows exactly how it should be done

Dr Norbert Ndjeka has received an honorary doctorate from the University of Cape Town
Written by Anja Reuter

During the course of the 52nd Union World Conference on Lung Health last week, Doctors Without Borders (MSF) announced the results of TB-PRACTECAL, the first-ever multi-country, randomised, controlled clinical trial to report on the effectiveness and safety of a six-month treatment regimen for multidrug resistant TB (DR-TB). Historically this is a form of TB that is very difficult to treat, requiring multidrug regimens that have to be given for a period of 9-24 months.

MSF and partners tested a regimen of four medications (known as “BPaLM”) containing two of three new medicines that have been developed in recent years. The study compared the results of this four-drug, six-month regimen to those obtained from a group that received the locally accepted standard of DR-TB care offered in the public healthcare system. Overwhelmingly, a total of 89 per cent of patients on the new regimen were cured, compared to 52 per cent in the standard of care group.

This is excellent news, and we hope that the results of this trial will add to growing evidence from other sources and lead to global treatment recommendations being updated. In many countries around the world, people with DR-TB still face lengthy and toxic treatment regimens of up to 20 months that can include painful injections and up to 20 pills a day.

The fact is, though, that even with shorter, effective treatment the number of pills that need to be taken remains high, the side effects remain numerous and the period of treatment remains onerous.

It is imperative that in addition to these advances in treatment we invest in finding people with TB disease early, and in preventing TB disease where we can. Collectively, we are miserably failing people in these areas, and COVID-19 has worsened the situation.

This was shockingly underscored last week when the World Health Organisation (WHO) released the 2021 Global TB Report, showing that TB-related mortality has risen for the first time since 2012, with 1.5 million individuals dying from TB in 2020.

Failing people with TB

At a 2018 high-level UN meeting, the TB community committed to starting 40 million people on TB treatment and 30 million people on TB preventive therapy by 2022, and yet we now know that in place of progress there was an 18% reduction in diagnosis of TB in 2020. This means almost half of the estimated 10 million people who became newly sick with TB in 2020 were not diagnosed or started on treatment for the disease. Even before COVID-19, the global TB community had fallen woefully short of the goal to eliminate the catastrophic costs faced by people with TB by 2020, with an estimated 50% of people with TB who face this terrible reality of life and wellbeing becoming impoverished and circumscribed by TB illness.

But it is lived reality that brings this catastrophe home. In Khayelitsha near Cape Town, the Kuyasa* family lives in a 30m2 home (smaller than a garage) off a busy street. In 2019, a member of this family sickened in the neighbouring Eastern Cape Province, and was diagnosed with drug sensitive TB and initiated on treatment. This young adult stayed far from a water source and being ill, decided in 2020 it would be better to join the family household in Khayelitsha township in the Western Cape Province.  This was the period when people were confined to their homes in line with COVID-19 lockdown regulations, and when the young man fell sick again the other adults in the house grew concerned, both about his wellbeing, their own health and the health of their children.

Was it COVID-19? The young man tested, and the results came back negative. No, it was TB, and it was active, because in June 2020 this young man’s sister, Sinidiswa*, was diagnosed with DR-TB, and soon afterwards three of the household’s six children were diagnosed with DR-TB, and another child was diagnosed with drug sensitive TB. The young man died of TB. Imagine the situation at this point – five people infected with the disease in a heartbroken household lacking any breadwinners, and everyone under one roof all day long including the four people who were not yet showing signs of having TB.

A devastating picture, and yet this is a story that inspires some hope.

But there is hope

When Sindiswa* visited her nearest clinic and was diagnosed with DR-TB, she took the brave decision (brave because TB remains highly stigmatised in the community) to let her doctor, nurses, and the counsellors caring for her know about the situation at home – her brother sick, many family members under one roof including several children.

Part of her medical team works for MSF, an organisation with a long history of collaboration with Khayelitsha’s communities and the Department of Health to address DR-TB. At the time Sindiswa was diagnosed, one of the organisation’s key focus areas was the identification and screening of all household contacts of DR-TB patients, especially children. An important aspect of this work was the delivery of preventive therapy for those who were exposed to DR-TB, to stop them from developing the disease.

Thanks to this programme and the Kuyasa family’s willingness to participate, four children were diagnosed who would otherwise not have been for some time and their TB disease was identified early, while still mild. They were initiated on treatment and are able to return to school. The three family members who were not diagnosed with DR-TB disease were initiated on TB preventative therapy to stop them from developing the disease.

The results and experience of this programme also featured at this year’s Union conference, at a multidisciplinary session chaired by Dr. Norbert Ndjeka, DR-TB focal point for the government of South Africa. The MSF team shared how they initially began providing services in the homes of patients as a response to COVID-19, and in the process realised that this approach vastly improved the delivery of services. These services included compassionate counselling aimed at the entire family unit; identification of people sick with DR-TB—especially children—early in the course of their illness; and the offer of TB preventative therapy to family members who shared the same air.

Thanks to this work, diagnosis and treatment of paediatric DR-TB increased six-fold, 150 child and adolescent contacts were identified, and 119 were initiated on TB preventative therapy.

The UN High Level Meeting targets around treatment initiation and TB prevention were not just paper tigers put in place just to be promptly ignored. They represent the work that must be done if we are serious about ending TB. The fact that we will fall so short of achieving them demonstrates that we are failing on a fundamental level, and we have a duty to sound the alarm but also show the way forward. The Khayelitsha model developed during COVID-19, and which the Kuyasa’s benefitted from, shows exactly how this should be done. – Health-e News

About the author

Anja Reuter

Dr Anya Reuter is a medical doctor who works for Medicins sans Frontieres.