Today we talk with GFAN Speaker Ani Herna Sari. Ani has been with the speakers bureau for over two years, she is a Chairperson of Rekat Peduli Indonesia, Vice Chair at the National TB Survivor Network POP TB Indonesia, and outside of Indonesia she is a member of the Global TB Community Advisory Board (TB CAB) and on the steering committee of TB Women. On World Tuberculosis Day, we turned to her to tell us about her work and the journey that brought her to where she is.
Ani, can you tell us about some of the projects you have been working on?
Ani: Of course. I want to talk in particular about the importance of giving agency back to TB patient, especially in the form of income generation. In Indonesia, like in many countries, falling sick from tuberculosis isn’t simply a matter of health. The disease hits marginalized people the hardest, and often cuts them off from their jobs. Because they lose their income, nutrition and transportation become difficult – so they weaken when they most need their strength. Offering treatment is not enough, because there are so many barriers to access for the people who fall sick. This is why with Rekat Peduli, we have been working to empower people with TB and give them the skills and the tools they need to maintain their income throughout their treatment.
Today, I want to talk about two income generation schemes we are working on. One is going very well, the other one is struggling to get off the ground – and I want to talk about both, to help people understand why certain project succeed and why others fail. We obtained funding from Stop TB to organize series of craft training for TB patients. We had two parallel series, one where participants learnt how to make Batik – Indonesian patterned fabrics – and another one where they learnt how to make salted eggs. The idea was the same for both series: participants would learn these skills, be given some advice on how to go about selling their product, and leverage the two into a new income stream.
We picked both Batik and salted eggs on similar criteria: they are very popular products in Indonesia, require limited skill and materials for production, and require limited physical efforts, so people with TB would be able to make them.
Quentin: And so you said one of them worked, and the other didn’t?
Ani: Yes, we had a lot more success with the salted eggs than the Batik. Some of it has to do with the cost of material – it’s more expensive to buy what you need to make Batik than salted eggs – but what participants to the program talked about the most after abandoning the making of Batik was that it was harder to sell. And it makes sense – a lot of people make Batik in Indonesia, and a lot of them are very good at their craft. Our training participants did not have the luxury to go through a lengthy apprenticeship, nor the resources to make dozens or hundreds of Batik before selling any, so they struggled to compete with their product. We had focused on what people could make when we designed the program, but did not spend enough time thinking of the way the market for Batik functioned.
But we learnt from that experience, and our other trainings were a lot more successful. Participants learnt how to make salted egg, which are a great product: they require only very simple ingredients (eggs, salt, water and some spices), are very easy to make, and keep for a long time, so there is not too much pressure to sell them immediately. And just as importantly, all salted eggs are pretty much the same – our participants did not have to compete with talented professionals when selling their product. Their eggs were about as good as anyone’s, even after limited training.
Now, a couple of months after the first trainings, the organizations we work with say that they have sold over 6,000 eggs – it’s really something. And it makes a world of difference to the people who benefit from that program. Even though they have TB and have to deal with side effects and stigma, they can earn an income, feel useful to their families and put food on the table. I really hope that more initiatives like this can be set up, especially in countries like Indonesia where there is a real gap for the provision of financial support to people with TB. And we are not giving up yet on our Batik program. We have worked to identify people to agree to buy the products in advance, to solve the issue of competing in a crowded market – and we have had some successes, and hope to get the program running again.
When I started to openly talk about my experience as a TB survivor, and decided to join survivor organizations, I was really hoping I could do my part so that no one would have to face the kind of experience I had when I fell sick. These trainings are a small thing of course, but I really feel like we had an impact.
Quentin: What convinced you to publicly talk about your experience with TB?
Ani: In 2011, I started coughing – a cough that wouldn’t go away. I had to go through four doctors, one of which thought I was allergic to air and should move to New Zealand, but I finally was diagnosed with Multi-Drug Resistant TB. I had been coughing for almost a year by that point, but still, the news was a shock. A few months into treatment, I realized that I was pregnant. The following period was excruciating, the side effects of the TB drugs worsened by the nausea and body ache of pregnancy. I made it through for my son, he gave me the strength I needed even before he was born.
The side effects of the drugs, the effect of TB, of the pregnancy – in a sense, I was expecting them. That did not make them a lot easier to bear, but I knew that I could be cured, and that there was little else to do besides giving up. My experience at the hospital, when I gave birth, that was different. I should not have had to go through that – no one should. Because I had TB, I was put on display, my privacy and my dignity constantly ignored. People were rude to me, throughout, as if I had done something wrong. They were careless with my son, kept him in isolation for a week – really, it was horrible.
I survived even that. It took me years to start talking about my diagnosis in public. Sometime in 2019, almost 4 years after I had finally completed my treatment, I came across Stop TB, met some of their staff, and somehow it gave me the confidence to come forward. I wanted to share my story, to bring change and to become a role model.
We’re really excited to have had the chance to help Ani share her story, and give her a platform to become a global TB advocate. You can read about the income generation programme implemented by Rekat Peduli Indonesia here and here, and about our Speakers Bureau here.