In 2015, the first TB survivor communications training event was held in Atlanta, GA, co-located at the 2015 National TB Conference and conducted by Stop TB USA and the National Tuberculosis Controllers Association (NTCA). From that inaugural class the importance of providing an opportunity for TB survivors to use their voices and their stories for advocacy, education, and peer-to-peer support was crystalized.
From this small group of survivors, Carrie, mother of Scarlett, launched we are TB. Carrie’s participation in the training and the opportunity to connect with others who had been impacted by the disease allowed her to recognize that her family’s experiences of delayed diagnosis and the challenging journey from diagnosis to treatment to cure were not unique and were replicated throughout the United States every day. The shared experiences of frustration about the lack of available educational materials and social support systems for patients and their families, the devastating stigma associated with the disease, the challenges for treatment completion due to side effects, the length of treatment, and the impact on the entire family and community motivated Carrie to take action to develop a community of survivors and family members so that others would not have to experience the isolation expressed by all members of that first training cohort.
Carrie applied for and received support from her employer (Deluxe) to contribute 100+ hours to the NTCA and used this volunteer opportunity to nurture and grow we are TB.
With Carrie’s leadership, a second TB survivor training was held in Denver in February 2016 and 12 additional TB survivors participated in the training. The partnership between we are TB, Stop TB USA, and NTCA expanded to include RESULTS, TB PhotoVoice, and industry partners – Aeras, CDC DTBE, QIAGEN, Oxford, Sanofi, Stop TB Partnership, and TB Alliance. Included in the 2016 cohort were several of the core members of the current we are TB community: Kate, Tenzin, Derek, Nauman, Tanwa, and Nicole.
Within weeks of the 2016 training, the we are TB community lost Nora Rodriguez, a member of the 2015 class and a facilitator of the 2016 training. Nora’s tragic and unnecessary death solidified for many the importance of the nascent work of we are TB. Nora’s life, her commitment to TB advocacy efforts and education of her own Mexican-American community in Denver, combined with her quiet and courageous spirit have served as inspiration to many and this website, and our ongoing work, is dedicated to her memory.
The 2018 survivor training brought many survivors together new and old, including Kadijah, Jackson and Kristen, Kristi, Earl, and Sue.
From the 2018 cohort, Kristi emerged as a leader and has translated the vision of Carrie and others into this website, the public-facing access to the we are TB community.
There are many individuals and organizations working in effective and engaging ways to end TB in the United States. The Centers for Disease Control and Prevention (CDC) U.S. TB Elimination Champions Project provides an opportunity to recognize accomplishments and learn best practices from people who are making a significant contribution to preventing and controlling TB in the United States. In 2019 the CDC honored we are TB as one of the 2019 U.S. TB Elimination Champions.