Find the missing millions

A young man in my clinic avoids eye contact. Peaked cap pulled low, he directs his unfocused gaze into a corner of the room. Recently diagnosed with hepatitis B virus (HBV) infection, he doesn’t know whether to believe this news, how to process it, or what it means for his future. He would rather bury it and move on with his life. Likely transmitted at birth or early in his childhood, this infection has travelled with him ever since, and has been found—only by chance—because he underwent blood tests for another reason.

This man is one of 260 million who are HBV-infected. That’s 4% of all humanity. To put this number in context, imagine filling Wembley Stadium with people selected to represent a cross-section of the global population; among them, we would find a startling 3,500 cases of HBV infection. And the virus is not a transient passenger, but has integrated into host liver cells where it can be resident for many decades. The infection is frequently “silent”—not causing symptoms—which means that the majority of those who live with HBV are unaware of it until organ damage eventually declares itself after many years. These end results can be devastating: liver scarring, organ failure, and hepatocellular cancer. For the large numbers who are infected at birth or in early childhood, this means disease and death in the prime of young adult life. The global impact of HBV is apparent from mortality data. While death rates for most cancers are declining over time, liver cancer deaths stand out as continuing to climb.

If undiagnosed or untreated, the consequences of HBV infection on health, wealth, and happiness can be diverse, impacting negatively on employment, economic productivity and education, on child-bearing and child-rearing, on social interactions, on well-being and longevity. In many parts of the world, a spotlight on diagnosis is not enough. There must also be a sustained commitment to match case-finding with education, clinical assessment, monitoring, and therapy. Living well with HBV can be attained. If the diagnosis is made and the right care follows, we can avert long-term disease, fulfil life potential, banish stigma, and prevent transmission.

The cliché about the tip of an iceberg is hard to avoid for HBV, but in this case we deal with not one but many icebergs, where few cases of infection are diagnosed, fewer have access to drugs, and still fewer have their infection appropriately suppressed on treatment. The large global burden of disease, the significant consequences of undiagnosed HBV, and the invisible nature of early infection underpin the urgent need for robust efforts and sustained, meaningful investment into better diagnosis. This year, the World Hepatitis Day theme of “Finding the Missing Millions” calls us to action and to account.

And how to find these millions? The challenge is a huge one, and this question is not easily answered. The problem has been neglected, and a large burden of disease is focused in lower income countries, where resources for diagnosis and treatment are scarce. Education and information are lacking, and stigma can be a substantial barrier. To make strides, we will first need to build awareness, work with individual communities to dispel barriers, and improve understanding. Multiple agencies have roles to play in this process, ranging from government and health-care providers to schools, public health bodies, charities, and the NGO sector. Diagnosis requires provision of quality-assured laboratory or portable “point-of-care” tests, and investment in clinical and laboratory personnel and infrastructure, with particular recognition of the needs of vulnerable and marginalised groups including antenatal women, migrants, and prisoners. We can learn from, and build on, the experience, approaches, and care provision that have emerged from the HIV epidemic.

My patient is just one of the “missing millions” who has been “found,” yet for him there is still a struggle ahead as he comes to terms with the reality of a long-term infection whose source is unknown, and that cannot be cured. Let us not underestimate the complexities and challenges of this personal journey. I am, however, optimistic for him. He has an engaged and supportive partner. He has care provided through a multi-disciplinary team including his primary care physician, specialist nurses and pharmacists, and a team of expert hospital doctors. He has access to a consistent supply of quality assured medication, and will be assessed regularly with blood tests and scans. He is fit to work, can earn a living, and enjoy his young family. I hope he does all of these things, and that for every one of the missing millions we can do more to offer this better, brighter future.

Featured image credit: Photo by Charlotte Zaidi.