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TB and HIV: Nothing about us without us

TB and HIV: Nothing about us without us

By Linda-Gail Bekker, President of the International AIDS Society, and José Luis Castro, Executive Director of The International Union Against Tuberculosis and Lung Disease

When it comes to tuberculosis (TB) control, the world is falling short. Despite being a curable disease, TB is the cause of one-third of the 1.5 million AIDS deaths each year and continues to kill an estimated 1.7 million people and infect another 10 million each year.

In over some three decades working in TB control, between us, we have survived TB, treated patients with TB and lost loved ones to TB. As two people personally connected and invested in the fight against the TB epidemic, it was a proud moment when the World Health Organization (WHO) launched a Global Plan to End TB, setting 2030 as the year to eradicate TB. However, slow progress on TB has already raised huge doubts about whether that goal is pure fantasy.

A vital set of interventions and changes has to coalesce to seriously make a dent in the upward curve of the TB epidemic. This includes increased investment in research and development, and pipelines of new diagnostics, drugs, treatment regimes and vaccines. And we need all of this very soon if our 2030 goals are to become reality. But how do we invigorate real action?

The coming together of the AIDS and TB communities, something rarely acknowledged until now, could have tremendous impact in driving down TB infections and deaths. A first important step would be for these communities to take real ownership in driving the fight against TB.

Consistent with the fundamental principles of the AIDS response, people living with (or having lived with) HIV/TB co-infection should lead and champion efforts to address the linked epidemics. It means taking the “nothing about us without us” approach to combat the stigmatization of TB among the public, people living with HIV and healthcare workers, as well as emphasize the availability of curative regimens and increase TB awareness overall.

Drawing from the experience in the AIDS response, we must insist on the accountability of national governments and other stakeholders to generate concrete results for people living with HIV/TB co-infection. Ambitious global TB targets will not be met without clear national targets. We must align national budgets and resources to engage the most heavily affected communities. We must address some of the policy and structural challenges that feed the ongoing epidemic. And we must ensure that national targets drive implementation of the WHO guidelines to achieve the 2030 TB targets.  

Integration of HIV and TB services has been a WHO-sanctioned global health priority for years, and many countries have made progress towards linking prevention and management of the two diseases. Yet in too many settings, HIV and TB programmes operate in their own separate silos. Limited efforts have been made to monitor the degree of HIV/TB service integration and to hold national programmes accountable for their pledges to ensure service integration. Our monitoring efforts must go beyond tracking whether countries have policies for HIV/TB service integration and actually focus on the implementation of those policies and tangible outcomes.

The efficiency and effectiveness of HIV services have been strengthened by the emergence of differentiated care strategies. This client-centred approach simplifies and adapts services to the needs of individuals, decongests clinics, empowers communities and avoids wasting unnecessarily intensive health resources when self-care strategies are available. We need to apply this same approach to the TB response across the board. Although we see the beginnings of progress, the truth of the matter is that we have a very long way to go.

Lack of HIV/TB service integration worsens outcomes, contributing to late diagnosis of these conditions, poorer prognosis and considerable HIV and TB transmission. It also wastes scarce health resources by encouraging duplication of services and suboptimal allocation of health workers.

But all the community cooperation and scientific innovation in the world will count for little without political will, something that has been sorely lacking. To make HIV/TB service integration a reality, much stronger political support is needed.

Today we have the diagnostic, prevention and treatment tools to begin to end TB, but ending TB as a public health threat will require both a greater range and scale of those tools at our disposal. The Global Ministerial Conference on Ending TB in the Sustainable Development Era, being held in Moscow in November 2017, and the upcoming, first-ever United Nations High Level meeting on TB held next year represent unique opportunities for real global TB leadership.  

Together, as TB and HIV activists, we must demand real action from these global leadership gatherings. We must remind the world that HIV/TB co-infection and the broader TB epidemic are global health emergencies. No person, regardless of where they are born, should be denied access to inexpensive, life-saving treatment for a curable disease.

It’s time that we end this neglect and give this disease the attention it deserves.

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