TB survivors bring their stories to policymakers on Capitol Hill

More than 20 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 U.S. and worldwide.

The meetings in the U.S. capitol marked World TB Day and included briefings in both the House of Representatives and the Senate. The group also met with the offices of individual legislators, including Congressman Jim Himes of Connecticut, who was moved by the personal testimonies of those who have overcome TB.

The testimonies brought home to policymakers the devastating and stigmatising reality of this disease. One of the survivors was a five-year old survivor of drug-resistant TB, who had prepared her own impassioned speech about the personal importance of tacking the disease.

Kate O’Brien, a survivor who was diagnosed with TB in pregnancy, said, “I received so much support from friends and family during my ordeal, that I feel obligated to speak for TB patients suffering from stigma and lack of a support system. It's important to remember that TB often goes under the radar because those suffering are hiding out of fear."

These meetings come at a critical moment. The presidential administration of Donald J. Trump last week released a brief budget document laying out spending priorities for 2018. The document urges Congress to fulfil prior commitments that the U.S. government has made to support the Global Fund to Fight AIDS, Tuberculosis and Malaria, as well as commitments to the U.S. global AIDS and malaria programmes. The same document, however, asks Congress to reduce the budgets for diplomacy and international development by 28 percent. Such a large reduction in funding for USAID could have a major impact on the government's capacity to address TB. 

In response, advocates are making the case that TB – as the world's deadliest infectious disease, and a disease where drug-resistance is a critical challenge – is a public health priority that urgently needs more resources. Advocates are requesting that Congress provide $450 million for global TB programmes administered by USAID, $243 million for CDC to support TB prevention and care in the US, and $1.3 billion for the Global Fund—the primary source of international funding for TB care and prevention worldwide. Advocates also urged Congress not to eliminate the U.S. National Institutes of Health’s Fogarty Center, which conducts operational research and trains researchers working on TB, HIV/AIDS and other infectious disease priorities.

Impressed upon all staff in these meetings was the importance of supporting the scaling up of the delivery of TB services, aggressively tackling drug-resistance, and ensuring sufficient funding for the research and development needed for better drugs, diagnostics and vaccines. This could not be more pressing, given the World Health Organization’s 2016 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. 

TB survivors were accompanied by staff from The Union, AERAS, the American Thoracic Society, RESULTS, TB Alliance, the National TB Controllers Association, Texas Children’s Hospital, Qiagen and other advocacy partners, whose collective advocacy is vital to mobilising funding for treatment and prevention, and for research, to end the world’s deadliest infectious disease.