Yes! we can end TB
Ten years ago Handa was a happy outgoing 15 year-old teenager full of hopes and dreams living on the outskirts of Ulaanbaatar, the capital city of Mongolia. But then on and off she kept feeling feverish, but just like a typical teenager she shrugged it off thinking that everything would be OK as the symptoms would come and go. But then one day during an exam Handa coughed up blood and realised that something was seriously wrong. In her own words she continues her story:
"So my Mum and I decided to go to a nearby hospital, which was about two hours away by bus….it was a long journey, but we managed to do an x-ray and from the moment of my [TB] diagnosis, me and my mum, my family started feeling discriminated or stigmatised… [My 6 months of treatment on antibiotics] were probably some of the longest times I had to endure, and that's not only because the illness itself is so difficult to overcome...it was difficult…so many side-effects, constant nausea, the antibiotics were strong, constant pains in my chest area…it was a difficult disease, but looking back, what made it really difficult was stigma. The social and the self-stigma…And I spoke with many TB survivors and patients and you will hear this from many of them. Stigma was one of the biggest barriers, next to the actual illness itself."
I first 'met' Handaa Enkh-Amgalan via zoom at the Results UK National conference in July 2022 where she shared her story as a TB survivor and advocate. 126 years previously in July 1896 a young French Carmelite sister also coughed up blood for the first time. Therese had joined the Carmelites at age 15, another teenager full of hopes and dreams. In a time when a cure had not yet been discovered, diagnosed with TB St Therese of Lisieux was to die a slow and agonising death from the disease.
Today, unlike in St Therese's time TB is curable and costs only $10 to treat if caught in time, but the tragedy is that TB is still around and annually kills 1.6 million people a year globally while in 2021, an estimated 10.6 million people fell ill with tuberculosis. In the UK too over 4000 cases are reported annually in the UK of which 16000 cases are in London
It is tragic that TB remains a major health threat in many countries owing to the lack of an effective vaccine and a historical lack of political will and investment. The Global Plan aims to eliminate catastrophic underfunding of TB programmes and accelerate the development of new TB vaccines, diagnostics and medicines but governments need to step up their commitments and include TB into discussions about global health security, pandemic preparedness and response, and universal health coverage.
Behind each statistic are stories of people like Handa and Therese and their loved ones. Pope Francis consistently speaks out about the dangers of stigmatising people. Handa said that stigma was one of the biggest problems in dealing with her illness, and describes how the social stigma of having TB made her feel unworthy and says she was constantly blaming herself for putting her family through this. "TB" she says "is something that could happen to anyone, why am I judging myself just because society has decided that we with TB are 'not worthy'. Handa considers "that's something really important to consider in addition to tackling the illness with antibiotics with treatments, also social treatments are needed to really end stigma and simultaneously end tuberculosis…"
In December 2022 the Vatican convened a High level dialogue to assess progress on and intensify commitment to scaling up prevention, diagnosis and treatment of Paediatric HIV and TB in children.
Although the action plan has not been published yet, the faith-based global health organization CMMB (Catholic Medical Mission Board) presented important commitments to scaling up the prevention, diagnosis and treatment of TB for children in Haiti, Kenya and Zambia. In particular it made commitments towards combatting Stigma and Discrimination in TB. They stress that stigma and discrimination depress uptake of testing and impede prevention and thus prevent children and adolescents at risk for acquiring TB infection of infected by TB from living healthy lives. CMMB committed to collaborating at all levels and working in communities, schools, and faith and healthcare settings to disseminate the Messages of Hope for TB and to combat TB-related stigma and discrimination, including among faith leaders. They also committed to working to mobilize these leaders and their faith communities in support of these anti-stigma and anti-discrimination efforts via evidence-based education and training.
World TB Day is observed annually on March 24 to raise awareness about TB and efforts to end the global epidemic, marking the day in 1882 when the bacterium causing TB was discovered. World TB Day 2023, with the theme 'Yes! We can end TB!', aims to inspire hope and encourage high-level leadership, increased investments, faster uptake of new WHO recommendations, adoption of innovations, accelerated action, and multisectoral collaboration to combat the TB epidemic. One of the key messages this year is on tackling health inequalities to ensure health for all. The Covid 19 pandemic has drawn attention to the deep disparities that persist between and within countries. People with TB are among the most marginalised and vulnerable facing barriers in accessing care. The World health organisation is calling for global action to address health inequalities for people with TB and other diseases.
And what of the UK government's response?
In 2022, the UK Government committed £1 billion for the next three years to the Global Fund to Fight HIV, TB and Malaria. While this was welcome, it was £800 million less than the Global Fund needed. The UK Government must recommit itself to leading the fight to end the TB epidemic. The UK has some of the best research and development (R&D) academic institutions in the world, some of which are working to develop new TB vaccines and drugs. It is to be hoped that the UK Government will support this effort with plentiful R&D funding, which will also be a valuable investment to combat future pandemics. The UK Government should also take a leading role in the UN High-Level Meeting. The success of these events often relies on the seniority of the people in the room at the time. We are asking Development Minister Andrew Mitchel MP to attend, and to urge his international partners to do the same. Many of us are contacting our MP's and asking them to write to Development Minister Andrew Mitchell MP
In his homily on Ash Wednesday Pope Francis spoke of the season of Lent:
'Lent is the favourable time when we can break the chains of our individualism and isolation, and rediscover, through encounter and listening, our companions along the journey of each day. And to learn once more to love them as brothers and sisters.'
I would suggest that if we were to look into our family tree we would find that TB has touched each of us in some way (for me it was my paternal grandfather who died of silicosis and TB and a maternal great grandfather who also died of TB). I like to think of them as a 'companions along my journey' cheering me on in the little bit of advocacy I can do. Perhaps your ancestors are doing the same? Why not give it a go?
And to get you started here are some ideas:
Results UK action file www.results.org.uk/sites/default/files/files/March%202023%20action.pdf
Shortened link: https://bit.ly/3LyO1b6
World TB Day
www.who.int/campaigns/world-tb-day/2023
Shortened link: https://bit.ly/3LA0Ulp
Video of Handaa Enkh-Amgalan telling her story: www.youtube.com/watch?v=PF_l8XyQVcQ
Shortened link: https://bit.ly/3lqFfkU
Vatican high level meeting on HIV and TB in children and young people December 2022
Shortened link: https://bit.ly/3ZZVcxw
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