The world is experiencing a historic pandemic of a novel coronavirus that has completely altered our daily lives and the entire world economy. Younger people experience more mild or moderate infections, although they are not spared from severe disease.
There is increasing concern that the massive disruption of this crisis may bring about a resurgence of tuberculosis, or TB – an ancient disease, in contrast to COVID-19 – due to the overwhelming impact of the coronavirus on health systems and on public health capacity. Given severe disruption to daily life and to health services, people suffering from TB may be unable to access care – for example, if they are unable to get transportation, if clinic or hospital activities are diverted to COVID-19 and unable to treat TB patients, or if labs stop processing TB testing. With delayed diagnosis and care, TB cases may increase.
Experts estimate that TB kills 4,000 people every day and 1.5 million people every year, making it the leading infectious cause of death globally. Progress made in ending TB has not been fast enough. Ending the TB pandemic requires a comprehensive approach that ensures optimal treatment for the most vulnerable groups.
As a pediatric infectious disease physician and researcher, I study how to improve care engagement and outcomes for adolescents and young adults living with TB or HIV. In a study in Botswana, our team interviewed health care workers about what changes are needed in youth TB management to improve outcomes. I believe that tackling TB infections and transmission must include addressing youth needs in TB care and putting young people at the forefront of this fight.
Current approaches don’t serve youngsters well
Youth between 10 to 24 years old experience 17% of all TB disease, or 1.8 million cases annually, and disease in youth may contribute to TB transmission within communities and households. Despite this, dedicated public health approaches or treatment guidelines have not been developed for youth with TB. Young people face challenges accessing TB diagnosis and completing treatment.
The transitions of adolescence can make it challenging for youth to engage with health services, particularly for complex and stigmatized diseases such as TB and HIV. They often rely on family to keep them engaged in care, but if they don’t have consistent support and resources, they may leave treatment.
Adolescents may be particularly affected by TB/HIV stigma, challenges in adhering to medications and structural barriers to care. They are also less likely to engage in testing and treatment for HIV, which often coincides with TB disease.
While health care workers attempt to adapt their management to adolescent needs, they have limited time and resources to do this, and lack dedicated guidelines, training or evidence-based models to guide their efforts. One nurse we interviewed told us, “if you don’t address the challenges, they end up lost.”
Despite long-standing knowledge that youth are at risk for TB, current care models may not meet young people’s needs.
What might more responsive care look like? The health care workers we interviewed strongly advocated for youth-friendly interventions similar to those being implemented in HIV treatment. That can include peer support groups or networks to help provide socialization and education about treatment. These groups go a long way to break through the isolation and stigma that young people experience.
Other models include having youth-friendly spaces, resources for more intensive counseling and dedicated training for health care workers to provide youth-friendly care. Other strategies such as increasing community-based care models or home visits bring treatment closer to young people.
Most importantly, we found that young people should be involved at each stage of planning, implementing and assessing the impact of such interventions. Youth can speak to their own needs and can best advocate for improvements to care and public health agendas.
Young TB activists Phumeza Tisile and Nandita Venkatesan, who were both left deaf by the toxicities of medications for drug-resistant TB, have given powerful voice to TB survivors. Further, youth who have gone through TB treatment can serve as a key resource for their peers. As one nurse noted, “after they complete treatment they are different people than when they came, and they can be the best teachers for others.”
Young people are central to the fight
On March 16, as the White House introduced stronger guidelines for social distancing in an effort to avoid a catastrophic surge in COVID-19 cases, Ambassador Deborah Birx, who coordinates the coronavirus response, had a distinct message for young people. “I think the millennials can help us tremendously. … Public health people like myself don’t always come out with compelling and exciting messages that a 25 to 35 year-old may find interesting and something that they would take to heart. The millennials can speak to one another about how important it is in this moment to protect all (vulnerable) people … There’s more millennials now than in any other cohort, and they can help us in this moment.”
Birx is directly applying lessons from her decades of fighting HIV to the novel coronavirus pandemic. Young people have always been leading the fight against HIV. In the 1980s, it was young ACT UP activists who pioneered patient advocacy and revolutionized the process by which novel drugs were quickly tested in clinical trials, speeding advancements to effective antiretroviral therapy.
Ryan White, a world-changing teenager, courageously fought against HIV stigma and discrimination, and his legacy includes the comprehensive national HIV care program that bears his name. Among the lessons of the HIV pandemic are that young people have the ability to drive social and systemic change.
We don’t yet know what lies ahead for the global TB, HIV or coronavirus pandemics. But we would do well to look to adolescents and youth to advocate for the solutions that will bring an end to this crisis, and to all global infectious disease emergencies.
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Leslie A. Enane, Assistant Professor of Pediatrics, Indiana University School of Medicine