Tuberculosis on the World Stage: Will Political Attention Translate into Action and Accountability?
October 12, 2018
The first-ever United Nations (UN) High-Level Meeting (HLM) on Tuberculosis (TB) was held on September 26 on the margins of the UN General Assembly in New York City—only the fifth such meeting on a health topic in the history of the UN. Often neglected and overshadowed by HIV and malaria, TB had a big week on the world stage. Dozens of side meetings were held on diverse aspects of tackling the disease. The World Health Organization (WHO) published its 2018 Global Tuberculosis Report. The U.S. National Institute of Allergy and Infectious Diseases (NIAID) issued its first-ever Strategic Plan for Tuberculosis Research. And for the first time in nearly a century, there was good news on the TB vaccine front: GSK and Aeras released results from a phase 2b TB vaccine trial showing 54 percent efficacy in preventing the development of active TB among HIV negative adults.
While the renewed attention on TB is certainly welcomed, the week felt disappointingly like business as usual. There were the customary laments about lack of political commitment and will, insufficient resources, complacency on both the research and program implementation fronts, and the absence of accountability. And while some leaders spoke of renewed hope, there was also an undercurrent of pessimism, with some seeming to doubt that the situation could be turned around quickly, let alone that the disease could be ended by 2030—the global target articulated in the Sustainable Development Goals. Perhaps nothing spoke louder about the lack of true commitment than the absence of Heads of State from the HLM itself, with only 15 in attendance. Only time will tell if the HLM plays a role in turning the tide of apathy on TB.
The WHO Global Tuberculosis Report 2018, released shortly before the HLM, set the tone with mixed news. While the worldwide rate of new TB infections (incidence rate) continues to fall by about 2 percent per year, there were still an estimated 10 million new cases of TB in 2017. The decline in incidence rate is less than half of what it needs to be by 2020 (4-5 percent per year) if the 2030 targets of ending TB are to be met. In addition, the case fatality rate from TB needs to drop to 10 percent by 2020 if 2030 goals are to be met, but in 2017, 16 percent of people diagnosed with TB still died from the disease. Drug-resistant TB continues to be a clear and present danger, yet in 2017 only 25 percent of the estimated 558,000 people with drug-resistant TB were treated. And then there is the shocking treatment gap. Of the estimated 10 million TB persons estimated to have active TB each year, only 6.4 million were reported, leaving an estimated gap of 3.6 million persons annually who have TB but are not diagnosed (and therefore never treated), of which India, Indonesia, and Nigeria account for more than 45 percent.
The reasons for this inadequate progress are multiple, including lack of political commitment, inadequate funding, poor access, weak health systems, slow uptake of innovation, and persistent stigma. Access to prevention, diagnostic testing, and treatment for tuberculosis—as demonstrated in the latest WHO report (mentioned above)—remains wholly inadequate in many settings, especially in countries with the highest burden. Also, adoption of TB innovations has been slow, in part because of the sluggishness of global TB policy setting at WHO and in part because of sclerotic and conservative national TB programs around the world. The aversion to change evident among TB physicians in many countries is at least in part explained by the tremendous paucity of innovations in tuberculosis over the past half-century. When bedaquiline was approved for use by the Food and Drug Administration in 2012, it was the first new class of TB medicines in nearly 50 years. Speaking at a U.S. State Department-hosted event about TB in Washington, D.C. during the week prior to the HLM, Dr. Anthony Fauci, the director of NIAID, remarked that we have been complacent in the fight against TB, and that “the tools for HIV are infinitely more sophisticated than for TB”—a situation partially attributable to an enormous differential in activism, which has translated into similar disparities in political will, funding, and innovation.
The NIAID Strategic Plan for Tuberculosis Research, which was launched on the day of the HLM, aims to overcome that complacency and articulates a mission to “accelerate basic, translational, and clinical research to improve understanding of TB and expedite the development of innovative new tools and strategies to improve the diagnosis, prevention, and treatment to end the TB pandemic.” While the plan is impressively broad and encompassing, the lack of prioritization (it basically is a blueprint for doing everything) and the lack of clarity regarding resourcing are both concerning. Throughout the plan, reference is made to leveraging existing resources, leaving doubt as to whether new funding will be made available to tackle a disease that is noted in the document to have killed at least a billion people over the past 200 years, more than have died from malaria, smallpox, HIV/AIDS, cholera, plague, and influenza combined.
While there is a need for innovation across the spectrum of tools and programmatic approaches to defeat TB, there is clear consensus that a point-of-care, non-sputum rapid diagnostic test will be essential, not only for primary diagnosis of active tuberculosis but also for monitoring response to treatment. Given that the 3.6 million persons with TB who are missed annually are often in settings where laboratory services are not easily accessed, a test usable by front-line health workers is mission critical. The general consensus is that the prospects for the development in the near future of such a test are good, with the strong support of groups such as the Foundation for Innovative New Diagnostics (FIND). However, there is a pressing need for more funding, better coordination, and preparatory policy work with WHO and national TB programs if such a test is to reach health care providers and patients expeditiously.
At the same time that we focus on developing new tools in the fight against TB, we need to acknowledge that we are failing millions with TB today because we continue to subject them to outdated and ineffective therapies, and because we treat them as cases of a disease rather than human beings with rights and meriting dignity. Many side events included heart-wrenching testimonials from TB survivors who have experienced terrible permanent disability as a result of existing treatment regimens. Several patients who had been treated with injectable antibiotics for MDR-TB recounted the harrowing moment of realizing that they had gone completely deaf. Perhaps even more shocking than the continued use of outdated treatments was one such patient being told that she was better off deaf than dead. Clearly, this is not a choice that people with TB should have ever had to face, and certainly not in 2018 when there are better, safer regimens available for even the most resistant forms of TB.
While there were frequent references in multiple side events to the urgent need for patient-centered care, there was little discussion about how to actually transform the patient experience. One way would be to rapidly and adequately fund efforts to test approaches for remaking the patient experience through human-centered design, a framework that develops solutions to problems by involving the human perspective in all steps of the problem-solving process. In other words, how do we work with patients being treated for TB to understand what ideal care looks like and then build systems for the prevention, diagnosis, and treatment of TB accordingly. Doing so would mean actually putting TB patients at the heart of designing solutions rather than offering lip-service to them in international symposia. It remains to be seen how many countries are really willing to take this essential step, and then share their experiences with other countries through a peer-learning network.
The degree to which TB remains a profoundly stigmatizing disease emerged as one of the most powerful messages of the week. Paulina Siniatkina, a TB survivor, activist, and artist from the Russian Federation, who is attempting to raise awareness and dispel myths and misconceptions about TB, made the bold but defensible claim that “Stigma is the main cause of TB,” and observed that “Stigma comes from fear, and fear comes from ignorance.” José Maria Di Bello, from Argentina, who has HIV and has survived TB believes that there is now more stigma from TB than from HIV. This is in part because the HIV community has mobilized broad grassroots activism to confront stigma, including the language used to describe the disease and the way patients are treated, which the TB community has yet to do. As another TB survivor noted, “People are more afraid of the stigma than they are of the disease, and it is killing them.”
Ultimately, it is the collective voices of those affected—directly or indirectly—by the disease that will combat persistent stigma, sustain the political will, and bring about the funding and action needed to turn the tide. As Lucica Ditiu, executive director of the Stop TB Partnership, eloquently, succinctly, and passionately stated, “We need an army of women who are outraged that children are dying of TB to challenge donors and heads of state.” Dr. Tereza Kasaeva, director of the WHO Global TB Programme, put forward a similarly powerful plea: “If 1 in 5 people who are treated for TB become activists, then we would have an army of 1 million to spread information,” and by extension, hold world leaders to account.
There is a palpable and ongoing tension in the community between those who think that the only sustainable path for defeating TB is to join forces with those pushing for universal health coverage (UHC) and stronger primary healthcare (PHC) systems and those who see any such integration as a threat. Right now, it seems that the stand-alone camp has the upper hand. Given that the HLMs on TB and non-communicable diseases were being held one day apart in the same city under the same UN banner, and that both efforts require health systems to be transformed to deliver more effective prevention, diagnosis, and treatment for chronic conditions, it was surprising how little was said about the ways in which these two initiatives could complement one another.
As for the declaration itself, titled “United to End Tuberculosis: An Urgent Global Response to a Global Epidemic,” it will not win any awards for dynamism. In trying to be all things to all people, and in making sure that everyone’s contributions to date are recognized, the document reads like a protracted thank you letter concatenated with a laundry/wish list. In typical UN fashion, the first 23 numbered paragraphs recognize, recall and take note of the many issues and events that add up to the lamentable state of affairs that is TB today. The remainder of the document (30 additional paragraphs) outlines a series of commitments so exhaustive that it risks facilitating inertia rather than catalyzing action. That said, the most concrete “asks,” including the successful treatment of 40 million people (including 3.5 million children) with TB from 2018 to 2022 and fully funding both programmatic and research efforts for TB ($13 billion and $2 billion per year respectively by 2022), could transform the TB landscape if achieved.
Certainly, the most pressing next step is to develop an independent accountability framework to ensure that the commitments in the UN declaration are tracked and met. Doing so requires a critically important first step of breaking down the global targets to country-level. For some commitments, such as how many of the 40 million people with TB each country should be responsible for identifying and treating, the process should be fairly straightforward based on existing data and estimates. For others, such as what proportion of the $13 billion funding gap each country will need to pony up, the process is likely to be far trickier and more contentious. Currently, the United States is by far the largest contributor (both through the Global Fund and through bilateral and research investments) to the global TB effort. All nations, especially the wealthiest, will need to aggressively step up their commitments if the global funding gap is to be closed.
The accountability framework needs to propose a global governance mechanism (including who is in charge of coordinating this vast effort) and also ensure that each and every country has a fully costed and time-bound operational plan to achieve the TB targets. As things stand now with so many organizations in the mix—Including the WHO Global TB Programme, the Stop TB Partnership, and the UN Special Envoy for TB to name just a few—it seems no one is in charge, and no one is accountable. Perhaps the best initial measure of success of the HLM would be whether there is an accountability framework in place within the next few months and whether all countries have costed and time-bound operational TB plans.
There are certainly widespread doubts about how the declarations of this high-level meeting will be translated into action on the ground that finds the missing cases and saves lives that are being needlessly lost. As Khuat Thi Hai Oanh from Vietnam observed, “the 40 percent who are missing are the high-hanging fruit, more likely to be vulnerable, voiceless, marginalized, and difficult-to-reach.” Thus, while the target is laudable, without concrete plans, more funding, and clear accountability, the declaration and discussions this week risk being nothing more than diplomatic drivel. In the words of Alberto Colorado, a TB activist, “This high-level meeting is too high for those who are dying from TB.”
Ultimately, the UN declaration needs to be turned into a series of commitments not only by governments, but also by civil society, academia, and the private sector. One model that could prove useful is the one developed by the US Centers for Disease Control and Prevention (CDC) to spur long-overdue action on tackling the ever-growing problem of antimicrobial resistance (AMR), an issue inextricably intertwined with tackling TB. In the margins of the UN General Assembly last week, CDC launched the AMR Challenge, for which it has already received more than 100 commitments large and small that will contribute to confronting this global challenge. A similar effort in TB could help in ensuring that the declarations made in the HLM do not turn out to be hollow promises. An outcome that must be avoided at all costs is holding a similar HLM several years from now with the same hand-wringing, and the same questioning as to why we have not done more to turn the tide on a disease that is preventable, treatable, and curable.
Robert Newman is a non-resident senior associate with the Global Health Policy Center at the Center for Strategic and International Studies in Washington, D.C.
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