September 19, 2023
12:00PM-12:45PM ET
Event type: Live online
PAST EVENT
TB survivors speak out for better care
Join Doctors Without Borders/Médecins Sans Frontières (MSF) for a virtual conversation with Phumeza Tisile, a tuberculosis survivor and advocacy officer for TB Proof, and Stephen Anguva Shikoli, national coordinator of the Network of TB Champions. In this live discussion, you’ll learn about their experiences surviving TB, which is still the world’s deadliest infectious disease despite the fact that it is curable.
Phumeza lost her hearing as a side effect of the older regimen of drugs often used to treat multidrug-resistant TB. She has worked in partnership with MSF for years to take on Johnson & Johnson and other pharmaceutical corporations blocking people's access to newer and safer treatments, and was recently profiled as one of the TIME100 Next leaders in global health. Phumeza and Stephen are both extraordinary leaders in advocating for access to lifesaving TB treatments and diagnostic tests for everyone, no matter who they are or where they live.
We're hosting this conversation with Phumeza and Stephen in the run-up to the United Nations High-Level Meeting on TB on September 22. MSF and other organizations are demanding that US corporations Johnson & Johnson (J&J) and Cepheid pledge to take action ahead of this landmark meeting to expand access to the lifesaving TB drug bedaquiline and GeneXpert tests, respectively.
MSF is one of the largest nongovernmental providers of TB treatment worldwide, and we also advocate for better care for people living with TB. Shailly Gupta, communications advisor for MSF’s Access Campaign, will moderate the discussion, and Dr. Stijn Deborggraeve, diagnostics advisor for infectious diseases for the MSF Access Campaign, will be available to answer your questions.
Above photograph: A health promoter speaks to the community in Eshowe. South Africa 2020
Meet the speakers
Phumeza Tisile
Phumeza Tisile is a health activist, student at the University of Cape Town, and an advocacy officer at TB Proof. In 2010 she was diagnosed with normal tuberculosis but eventually learned that she had extensively drug-resistant TB (XDR-TB). She went through grueling treatment for multidrug-resistant TB (MDR-TB) that left her deaf in both ears. In February 2015 she got a once in a lifetime chance to hear again through a crowdfunded campaign that helped pay for two cochlear implants. She has led numerous advocacy efforts around the world. In 2014, she co-authored and presented the first DR-TB manifesto, “Test Me, Treat Me,” to the World Health Assembly in Geneva. In 2023, she was named on the TIME100 Next list of influential leaders.
Stephen Anguva Shikoli
Stephen Anguva Shikoli is the national coordinator of the advocacy group Network of TB Champions, based in Kenya. Stephen recovered from this disease in 2009 and has been an avid advocate for better TB treatments since then. He is a member of several national and global working groups, including the Stop TB Partnership. He is also the founder of his own organization in Nairobi called the Pamoja TB group, which advocates for better services for TB and HIV patients while addressing stigma and discrimination in the community.
Shailly Gupta
Shailly Gupta is the communications advisor for the MSF Access Campaign based in Geneva. She is an expert in advocacy and development communications with 15 years of experience in the area of public health and access to medicines. She has worked extensively on advocating and communicating against intellectual property barriers to access to affordable diagnostics, medicines, and vaccines and has worked on disease-specific dossiers including COVID, tuberculosis , HIV, hepatitis C, non-communicable diseases, and neglected tropical diseases including Ebola. She is passionate about finding opportunities to amplify the voices of people from affected communities and holding power to account.
Dr. Stijn Deborggraeve
Dr. Stijn Deborggraeve is the diagnostics advisor for infectious diseases for the MSF Access Campaign. Together with the MSF movement, global health actors, civil society, and country governments, he works to improve access to diagnostics through advocacy for affordable and transparent pricing, sustainable supply, and R&D that meets the needs of low and middle-income countries.
