By THE GLOBAL FUND
When Meirinda (Mei) Sebayang was diagnosed with multidrug-resistant tuberculosis (TB) in 2006, she spent five months in near-complete isolation, on the second floor of her family home in Bandung, Indonesia.
Treating multidrug-resistant TB is brutal.
Her illness made her weak and unable to work. While grateful to be able to afford TB treatment – which was then far out of reach for so many – she suffered. At 28 years old, she lost her hair and couldn’t walk on her own. Antibiotic injections left her with hearing loss that she still struggles with.
But the treatment finally worked. Eighteen months later, she was cured.
“It was hell. But it made me realize who I am,” Mei says.
Today, Mei is fighting to end TB in Indonesia. She is the chair of Jaringan Positif, a network of people living with HIV in Indonesia. She is also a member of Indonesia’s Country Coordinating Mechanism, the national committee that submits funding applications to the Global Fund and oversees grants on behalf of the country.
As an HIV and TB advocate, Mei offers support to people fighting TB in her community and advocates for policy change to end the stigma, gender inequality and discrimination that prevent people from accessing prevention and treatment services for TB.
She says that those who are most impacted by TB should be at the heart of any successful response to combat the disease. Communities should be the ones to chart the path forward.
“Being part of a marginalized group should not be a barrier to achieving your dreams,” she says.
Mei recently visited a community shelter in Bogor, where five children were being treated for TB. She enjoys spending time with the children, sharing their love for drawing, and listening to their stories. Mei knows how hard the battle with TB can be, and by sharing in the burden of their struggle, she aims to lend strength to the children who are affected by the disease.
“I just want to see in their eyes that they still have hope,” she says. “Because children, they are the future of this country.”
TB is an age-old disease that was officially identified in 1882, but remains the world’s second deadliest infectious disease, only behind COVID-19.
According to the WHO Global TB Report 2022 , 10.6 million people fell ill with TB in 2021, up from 9.9 million in 2020. This is the first time the number of people falling ill with TB has increased for most of the past two decades. The COVID-19 pandemic disproportionately affected TB services and challenges with providing and accessing essential TB services continue. Of the 10.6 million people who fell ill, 40% were “missed” – meaning they went unreported or untreated and continued to suffer from and spread the disease to others.
The report also revealed that an estimated 1.6 million people died of TB last year, and that TB remains the leading killer of people living with HIV, causing 1 in 3 deaths.