“UCAP has been buzzing with energy, particularly since this year’s conference is online, giving us huge opportunities to reach more people than we have ever reached before”

“UCAP has been buzzing with energy, particularly since this year’s conference is online, giving us huge opportunities to reach more people than we have ever reached before”

Rhea Lobo is a tuberculosis (TB) survivor, member of The Union's Community Advisory Panel (UCAP), and an international award-winning filmmaker. Having been trained by the BBC as a journalist, Rhea works in all aspects of communications and filmmaking relating to global health.

“One of my career highlights was when Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization (WHO) tweeted about a human rights film I made, which was a tribute to our dear friend and TB survivor, Dean Lewis.” The film Rights and Wrongs was supported by the survivor group TBpeople and the Stop TB Partnership.

Rhea contracted TB and was motivated to improve how people are cared for during treatment, “I was first misdiagnosed and then given the wrong dosage of medicines, putting me at the risk of becoming drug-resistant. I am a woman of privilege, and I used to wonder that if I had suffered as much as I had, what would the situation be like for others without access to doctors or facilities?”

The Union invited Rhea to speak with Indian Members of Parliament at an event to launch the India TB Caucus in Delhi and also at The Union’s ‘India Vs TB’ cricket event to raise awareness of TB.         

Rhea is pleased to note that The Union’s approach has shifted in the past few years, ensuring that community becomes equal partners in all that The Union does, “By getting national TB programmes, scientists, the private sector, researchers, civil society and community all in one space, and encouraging interaction, we are constantly learning from each other. This approach can only improve our chances of ending TB and fighting other lung diseases.

“We have a long way to go before TB becomes a community-led response, but the more an organisation like The Union encourages this attitude, the stronger our health systems and responses will be for the very community we work for.”

Rhea is the South-East Asia representative of UCAP. Since its inception in 2016, UCAP has advised The Union’s board and staff regarding global priorities and needs of affected communities and civil society. Its members are actively involved in the organisation and planning of the Union World Conferences and associated events, including Community Connect, the Survivors Summit, and the conference scholarship programme.  

Rhea says she is looking forward to this year’s Union World Conference: “UCAP has been buzzing with energy, particularly since this year’s conference is online, giving us huge opportunities to reach more people than we have ever reached before.

“One of the biggest developments is that survivors of TB and lung diseases, including COVID-19, get free access to the conference. We are also excited about Community Connect, which covers important topics including human rights and community responses to health emergencies. We have encouraged community organisations to take the lead in developing each track, and these important community discussions will help us strengthen the TB response.”

This year’s Union World Conference will take place against a challenging global backdrop. Rhea is concerned for her own country: “In India, COVID-19 has created utter chaos, particularly with regard to the treatment of other diseases since the priority has been mainly focused on dealing with COVID-19. As a result, countless lives are being lost because people who are sick with TB and other diseases have little or no access to their doctors or hospitals.”

Rhea’s family were supportive throughout her TB treatment, they are involved in her work as a TB advocate and will be there during times of COVID-19. Rhea says: “When a person is sick with TB, people don’t tend to think about the family and what they might be going through. There are a lot of societal misconceptions about TB and its associated stigma; the entire family is fighting the battle, as well as caring for a person who is unwell. There needs to be proper counselling and treatment literacy for the entire family.”

Rhea’s excitement and positivity is undoubtedly a key factor of her success. Only last week, she learnt to ride a bicycle. She said that a friend gave her the best advice while she was learning: “Don’t look down, look ahead!” After listening to that advice, the next thing she was aware of was that she was zooming along the track.

News