The Union World Conference on Lung Health 2022 (WCOLH) is officially underway. Today’s press conference, chaired by President and Interim Executive Director of The Union Prof. Guy Marks, shed light on diverse topics such as the outcome of the ambitious TB-PRACTECAL clinical trial on pregnant patients, the role of social media in empowering youth advocacy and increasing TB awareness, the impact of COVID-19 on youth TB testing and diagnosis, and the harrowing tale of a TB advocate who tested positive while pregnant.
The event takes place against the backdrop of increasing TB cases and deaths, conflict around the world and with much still to be done to tackle the COVID-19 pandemic.
Press Conference Speakers and Topics
Trailing the TB-PRACTECAL final trial results
Bern-Thomas Nyang’wa, Medical Director at Médecins Sans Frontières and Chief Investigator for the TB-PRACTECAL clinical trial, previewed the final results. TB-PRACTECAL is a phase II/III adaptive, randomised controlled trial examining six-month treatments for rifampicin-resistant TB. The final results will be presented on Friday 11 November, 12:30 CET.
Bern-Thomas shed light on the observed outcomes for pregnant patients who tested positive for drug-resistant TB, and were then treated with new and repurposed drugs. “Without a specific design for it, these regimens looked safe, especially when that consisted of bedaquiline and linezolid, and also the treatment outcomes were positive.”
Prof Guy Marks, President and Interim Executive Director of The Union, commented: “Thank you to MSF for its excellent work in undertaking this study, which is crucial to the evidence base for treatment of people with multidrug-resistant TB.”
Indonesian TB advocate to speak about her experience of having TB while pregnant
Ani Herna Sari highlighted the untold difficulties of testing positive for TB while pregnant with her child. “Women with TB who are pregnant should get more attention because we have two lives to save.
“My struggle to find the right treatment was not without sacrifice, because I changed from one specialist to another, went to several doctors and spent a lot of money on medicine.
“Until I was six months pregnant I still got the TB injections and after eight months of pregnancy I gave birth to my son. This time was one of the hardest because I faced discrimination as a person with TB. I was placed in a glass isolation room, at that moment my privacy and confidentiality was ignored, because I was on display and should have been focusing on giving birth. That was the most embarrassing moment of my entire life.”
Prof Guy Marks reflected: “Thank you for sharing your story, Ani. It highlights a whole lot of issues around TB: people not getting accurate diagnosis in a timely manner, difficulty in accessing appropriate care and the indignities of receiving care that is stigmatising and discriminatory.”
Ani’s presentation is part of the ‘Maternal TB: Current status, research gaps and way forward’ session today at 17:00 CET.
The impact of COVID-19 on TB testing and diagnosis in children and adolescents in the Western Cape Province, South Africa
Little is known about the impact of the COVID-19 pandemic on child and adolescent TB. Karen Du Preez, Senior Researcher and Clinical Epidemiologist at Stellenbosch University in Cape Town, spoke about trends in TB investigation and diagnosis in the Western Cape Province of South Africa, and why improvements in TB case detection in children and adolescents remain a priority. “In 2021, 1.2 million children between the ages of 0 to 14 fell in with TB globally this is approximately 11% of the total TB burden, yet only 7% of all TB notified cases were in children.
“Essentially more than half of the 1.2 million children with TB were undiagnosed and untreated.”
“We know that the COVID-19 pandemic, caused devastating effects of the tuberculosis care globally and resulted in repeated disruptions to services and reduced access to care. Yet little research has been done to date to measure the impact on children and adolescents.
“We compared annual average TB testing and diagnosis from a pre-COVID period of 2017-2019 to what was observed in 2020 and 2021. Initial results from our study found that in 2020 TB testing in children (0-9 years) and adolescents (10-19 years) declined by nearly a third, and was nearly twice as much as the 15% decline observed in adult testing.
“Encouragingly in 2021, adult testing almost returned to the pre-COVID testing average, but in children and adolescents there was a remaining deficit 14% and 16% respectively.
“What was quite concerning was that case detection in adolescents have only increased by 1% between 2020 and 2021.
“TB case detection in children and adolescents has been a challenge before COVID-19, but COVID has definitely exacerbated the challenge. It should be a key priority in our national TB recovery plan and not only in South Africa. We don’t have a lot of data, but I am sure this is a problem many other countries are facing.”
Prof Guy Marks added: “At the most superficial level the fact you are finding less cases of TB in children might appear to be good, but it is not as the cases are still occurring, it is just that we are not detecting it. This means more transmission of TB and more people will have morbidity and more risk of mortality from TB. And now we are seeing that in the latest global TB data.”
The full results will be presented during the ‘OA-34 Important topics in child lung health’ session on Friday 11 November at 16:30 CET.
Social media approach in raising TB awareness for youth
Siva Anggita, Leader of the Youth Movement of Tuberculosis in Indonesia, spoke about the importance of harnessing the power of social media to increase TB awareness and maximise outreach. “Many people find it challenging to seek the right information. For example if we have TB symptoms, like a cough, fatigue or we lose weight. If we type that in any online search it somehow appears that we have late stage cancer. That makes young people more afraid to attend health facilities.
“By raising the tuberculosis information, we will hopefully help young people understand what they have and that it can be cured.
“What makes this campaign different is that we are not only engaging famous people who have many followers, we try to engage young people who have a medical background to join this campaign and to bring the best information to the people about the TB so that they will not get any misinformation.
“In this case we are engaging TikTok Indonesia. By engaging the social media platform we can make a very good use of the technology behind the platform and engage more people and influencers and get a bigger outreach.”
Prof Guy Marks said: “The message that I would like to get out to the young people of Indonesia is that they have a right not to be infected with tuberculosis. They should demand from their civil societies and governments that they are protected from developing TB.”