The Union convened its first ever Survivors Summit on the eve of the 50th Union World Conference on Lung Health in Hyderabad, India, bringing together dozens of survivors of tuberculosis (TB) and lung disease with the aim of harnessing the power of the community to create a more coordinated global advocacy movement.
To hold governments accountable for global commitments and to lead the development of people-centred health systems and solutions to TB and lung disease, it is essential to place people with lived experiences central in the conversation.
Survivors from across the globe came together to share their personal experiences and discuss the most pressing challenges facing people with TB in their regions.
Here are some of their stories.
Tenzin, 29, USA
“I was diagnosed with multidrug-resistant TB (MDR-TB) in 2013. I should have been diagnosed six months earlier but I had a misdiagnosis, and that speaks to the difficulties with TB diagnostics and the negative impact that it can have on patients. My treatment took about 28 months with 139 days of home isolation. It was difficult to go from being a college undergrad with an active social life to not being allowed to be around anyone. It was a rigorous treatment programme with lots of side effects. Luckily for me I had a lot of support from family and friends, which is not always the case for many people with TB, and that made a huge difference for me in enduring treatment and staying strong mentally.
“I’m here at the Survivors Summit to share my experiences and advocate for better diagnostics and better treatment for TB. There is value in thinking about who is most impacted by TB and some of the most brilliant solutions come from people most impacted. We need opportunities like this to speak on our own behalf and be part of the conversation to improve healthcare for TB patients all across the world.”
Talkmore, 40, Eswatini
“When I heard that there was going to be a TB Survivors Summit I was excited that at last something is happening for us. Usually we don’t have this platform at conferences. Now we can have our voices heard.
“I’m originally from Zimbabwe. I left in 2009 to look for greener pastures in South Africa. As an illegal immigrant you can imagine how difficult it was to find work. In the process of trying to make ends meet, I decided to form a small construction company with three employees. We all stayed together in one crowded room, and from that situation I started developing the symptoms of TB; coughing, night sweats, fever. It took me time to go and seek the cause, because I was scared go to hospital for fear of being confronted by the police and being deported back home. Eventually I decided to seek help and was diagnosed with TB. It was a difficult result to take because of the stigma that I had seen friends go through. They were treated by the community as if they were cursed. And my support system wasn’t great because I was away from home with no family around.
“Even though I have a qualification in chemical engineering, now I want to do something that I am passionate about, so I’m working for two organisations for people with TB. Through these organisations, I can disseminate the information I get from the Survivors Summit into the communities that we work with, so that we can empower them to demand access to treatment and better services for TB.”
Albertina, 47, Eswatini
“I have had TB twice. I was first diagnosed in 1997. I crossed the border into South Africa to get a diagnosis. Because the hospital knew of TB-HIV co-infection, they also advised me to test for HIV, and I found out I was positive for both.
“When I had TB the second time in 2014, I was alone with my daughter, and because I was weak, I couldn’t even clean my house. People were laughing at my house and saying I was lazy. As a woman you might be sick but no one understands, they expect women to be doing things.
“Because of that I started my own organisation for women living with HIV and TB, called Positive Women Together in Action. The information we get as women about TB and HIV is often “one size fits all”. Women have concerns different from men and children. So I wanted something that addresses the unique challenges faced by women.
“The Survivors Summit is important because I can meet other TB survivors and share experiences with them, and it helps to broaden my understanding of TB.”
Paul, 49, UK
“25 years ago I was infected with MDR-TB which was very hard to treat. I believe I am alive today because of the country I was born in. And I’ve come today because I want everybody in the world to have the same treatment that I’ve had.
“I’ve written several books on my experiences with TB and HIV; one of which came out recently called Diary of a Modern Consumptive, and one called the Tuberculosis Survival Handbook. Through writing, I came to work in TB activism. I believe that TB is a human rights issue. Everyone has the right to the best science, the best treatment that is available.
“Everyone at the Survivors Summit has come from different parts of the world, and we all have different stories and different cultures. But it’s our similarities, not our differences, that will guide us in our advocacy objectives over the next year.
“The Survivors Summit is a big move for The Union, and we’re very grateful for it. I commend The Union for supporting this in the way that they have and for making it happen.”
The Survivors Summit is an entirely peer-driven meeting bringing together those whose lives have been marked by TB and other lung diseases.
Photo©The Union/Marcus Rose