The Voices of Our Champions: Reflecting Back on the Stop TB Talk Show
The voices of our champions – their call to action on poverty and health is what keeps us going, it’s what inspires us and — we hope — our elected leaders. But imagine having them all on a televised talk show to tell their stories on tuberculosis, HIV/AIDS and human rights! That’s what took place on July 22nd at the Newseum in Washington, DC and it is definitely worth watching either in its entirely or in segments – now archived at www.stoptb.org/talkshow/. You will be inspired and energized!
The Talk Show was the product of a collaborative effort among many parties, including RESULTS, led by the Stop TB Partnership and co-produced with the International Federation of Red Cross and Red Crescent Societies, with the goal of bringing to the discussion on global health the voices of those most directly impacted by tuberculosis and TB-HIV.
Natalie Skipper of Tennessee, a young American who told a harrowing story of acquiring drug resistant tuberculosis while a volunteer in South Africa, was one of the featured guests. It took three years for her tuberculosis to be properly diagnosed and cured and she urged more investment in development of better medications. Natalie also spoke at a congressional briefing, sponsored with the The video of her moving story is not to be missed.
“Who is listening to the sufferer?” was the resounding question at the event, posed by South African TB survivor Gerry Elsdon, who has been an avid campaigner on tuberculosis and who published an op-ed with Archbishop Emeritus Desmond Tutu the same week. She and fellow journalist Jeanne Meserve, formerly with CNN, took turns putting key officials from UNAIDS, WHO, and the Global Fund on the spot with tough questions.
A call for patients’ needs to be put at the center of the response and for governments to muster the necessary political will was the main theme, strongly made by pediatrician Jennifer Furin, MD, of Case Western Reserve University in Ohio, who has served with Partners in Health in Lesotho and Haiti.
Dr. Furin said countries must stop denying they have a problem with tuberculosis and they must address the needs of children affected by the disease. Another physician, Dr. Krishna Jafa of PSI, told her own story of acquiring TB in India at the age of 10, undergoing painful treatment, and years later seeing what she called a “horrific” level of fear and stigma about the disease among medical students.
Young patient-advocates from Africa powerfully made the case that the enormous shame and fear about the disease need to be broken down if we are going to save lives. Fifteen-year-old Hermanique Hess, from South Africa bravely told her story of getting tuberculosis when she was seven. Alice Birungi, from Uganda, who started a youth organization to help others in her area or rural Uganda, told us that because people fear TB more than HIV the level of stigma about TB is actually higher. She spoke about the challenges women face and said all services fully integrated.
Dr. Jafa noted the large gap in available resources for TB and reminded the audience that by simply missing three doses of medication a patient can begin to develop drug resistant tuberculosis. Christoph Benn, Director of External Relations and Partnerships at the Global Fund, told the audience that the Fund is ready and willing to scale up financing for tuberculosis, including drug resistant TB, and that it is eager to receive proposals from countries that combine TB and HIV services.
Special guest Regan Hoffman, Editor in Chief of POZ Magazine, said that by breaking the silence about TB we can “evolve the conversation” and combat stigma. As a person living with HIV, she said that the community of people living with HIV is ready to help and will demand action on tuberculosis.
Please watch the video in segments or in its entirety; the talk show really was a great format to discuss the need to focus on TB-HIV.