Sixteen tuberculosis survivors met with leaders on Capitol Hill in Washington, DC, to share their experiences with those who have responsibility for determining the US government’s response to TB both in the US and worldwide.
Sixteen tuberculosis (TB) survivors met with leaders on Capitol Hill in Washington, DC, to share their experiences with those who have responsibility for determining the US government’s response to TB both in the US and worldwide. This was part of World TB Survivor Advocacy Day – an annual event coordinated by the US-based TB Roundtable, on whose secretariat The Union serves with other partner organisations.
The meetings in the US capital included briefings in both the House of Representatives and the Senate. The group also met with the offices of dozens of legislators.
The testimonies of TB survivors highlighted to policymakers the personally devastating and stigmatising reality of this disease. Kristine Steward-East, mother of Jack who survived TB in infancy, spoke at a briefing in the U.S. House of Representatives, about the challenges she and her family faced in the course of treatment.
“I didn’t know if he would survive,” said Kristine, “When Jack got sick, I had only ever heard the word TB maybe twice in my life. Luckily, I knew Texas Children’s Hospital, where I had given birth. Thanks to them, Jack is a survivor and has no developmental delays.”
Throughout the day a clear message was given of the importance of sustained funding for TB research and development efforts to develop new drugs, diagnostics, and vaccines. This funding is particularly crucial for the urgent crisis of drug-resistance, there were 558,000 cases of drug-resistant TB globally in 2017.
Kate O’Brien, a survivor who was diagnosed with TB in pregnancy, said, “I still remember what it felt like having TB at its worst. Choking out painful bloody coughs and honestly wanting to just curl up and give up. If I didn’t have my baby to live for that could have happened, I was so sick when I was finally diagnosed. Those memories haunt me and anger me. That pain was preventable. All of it, for everyone - the pain, the death, the drug-resistance problem we now face, it’s all been preventable. This is a problem we can solve. We just need people to care.”
Paul Jensen, Director of Policy and Strategy, The Union, attended the meetings and explains the significance of the event. “Political support from the United States government is critical to ending TB,” he said. “Congress passed a much-needed increase for global TB programmes last year, and it’s critical to ensure this added support is sustained into the future. Because TB receives so little funding compared with the actual need, any decreased funding creates a public health.
“Out of every 7 people who developed drug-resistant TB last year, only one received a diagnosis and successfully completed treatment. The diagnostics, the medicines, even the TB vaccine is inadequate. We have so far to go in providing TB care and supporting research to end the epidemic, and having stronger political support is the only way we will end TB.”
This could not be more pressing, given the World Health Organization’s 2018 Global TB Report identified a gap of US$1.3 billion per year between what is needed for TB research and development, and the funding actually invested.
World TB Survivor Advocacy Day was coordinated by the American Thoracic Society, the National TB Controllers Association, IAVI, RESULTS, TB Alliance, The Union, Treatment Action Group, and We Are TB, a partnership that is vital to mobilising funding for treatment and prevention, and for research, to end the world’s deadliest infectious disease.