The below article contains reflections on undertaking a hepatitis B research project in East Africa, including describing challenging cases of end stage liver disease. Readers may find some of the content distressing and discretion is advised.

A wail echoes through the local hospital ward. Moments later a mother throws open the doors of a side room and flies out, her colourful kanga sweeping behind her. Staff and visitors peer into the room. A man is slowly packing up the clothes strewn over the floor, avoiding the motionless body behind him, his son, barely out of teenage years had died moments earlier. He works methodically, without emotion, his eyes blank, clearing the debris of several days in a tiny side room. The day prior to this another patient with hepatitis B virus was placed in this same room alongside him, barely enough space to walk between the beds. The staff had isolated them together in fear of onwards infection. The other man had died the previous night and his bed since removed.

I had first met this family several days earlier. A call from one of the hospital consultants – another case, could I see him? I met him on the ward - a young man lying in bed with a wild, vacant expression, agitated and restless. He was encephalopathic, always needing a family member with him as the bed had no sides, and the staff were too busy to stop him from falling. The family had looked at us with hopeful expressions. Could we do something? Was he is going to get better? I could tell from the end of the bed this was not going to happen. His yellow abdomen swelled through his shirt, buttons ripped open. Although we could treat the hepatitis B, there was nothing we could do for his scarred, failing liver. We talked the family through what hepatitis B was and the likely prognosis. His father understood, quiet and sad, but grateful that finally someone had taken the time. The boy’s mother was joyful, prayer would cure him just as it had cured her and her younger son. We learned then they had all been diagnosed some years earlier, mother and two sons, likely infected perinatally. They had taken treatment for a while, but the financial burden of missed workdays, travel costs and daily medication became too much. Clinical care is not decentralised, so follow up was only available at the county hospital which was some hours travelling from their home. Currently the rest of the family seemed well, assuming they were cured, but given hepatitis B is incurable and there are often no clinical signs until liver damage is irreversible did not bode well.

This is not an isolated case. A few weeks prior to this, another young man came to our hepatitis B testing clinic. He was in his 20’s with end stage liver disease of unknown cause. His family reported he had been completely well until 3 weeks prior when he had started going yellow. On reflection, they admitted his abdomen had become increasingly swollen over the last 6 months, but hospital care and travel were too expensive to justify until things became critical. He was wheeled into the clinic, head lolling with the same expression of the man from the side room. His brother and sister were both scared. We did the test, a single drop of blood onto a rapid test kit and even before the control line showed, the line of a positive hepatitis B test. We spoke to his brother, explaining the result - there was treatment available for the virus, but his liver was now so damaged there was no way back. He didn’t want to listen for long, having heard all that he needed. He wanted his brother back on the ward, and I heard later he had died that night.

Since being involved in the care of these patients, I have seen multiple others with a similar story. These stuck with me as they were my first. I had read about cases such as these before moving abroad for my PhD, but they seemed distant. The shock of witnessing them first hand, in such young patients with such severe disease was harrowing. They had been failed by the healthcare system on a systemic scale. There was testing, treatment and vaccination available globally for hepatitis B, but this often did not translate into local communities. I debriefed with my team - It was emotionally draining being closely involved with these families - my team more in the thick of it that me being native Kiswahili speakers. There was very little we could have offered, other than a listening ear and some information about the virus. Not much help when your child is dying in front of you. During these early debriefing discussions, one of the team muttered “this Hepatitis B is awful, something has got to be done”; “This is it, we are doing it” came my reply, but we felt lost, drowning in the despair of the people we had failed to help. We were doing something, but it seemed pathetic, too little too late. We were feeling helpless and overwhelmed.

There was no other choice but to continue. Although my study was small, I hoped that as time went on, word of mouth would spread, more people would come, and even if we could diagnose and treat one person before liver cirrhosis or cancer took hold, it would be time well spent. We began to increase our presence in the hospital, now testing in the outpatient department three times per week instead of one. I began doing endless educational sessions for hospital staff, telling them they should test, making them understand hepatitis B was mostly transmitted perinatally or in very early childhood rather than through promiscuity or demons as some people believed. Trying to dispel stigma, giving faces to those living with the virus rather than it being a nameless terror. People started coming to us who were already diagnosed. Often, they had seen relatives die of the disease and had been branded as a cursed family or had been tested prior to travel as part of a work abroad scheme, their hepatitis B diagnosis shattering their life’s plans. They were feeling isolated and scared. There is no employment protection in many countries for those living with hepatitis B and often work abroad schemes will exclude them for fear of onward transmission or burden on the recipient countries healthcare system. Results had been given to these people with little discussion or information. They had been told they needed to pay for a hepatitis B viral load measurement, usually required to identify those at highest risk of liver disease and to make treatment decisions, and with obvious implications for transmission risks. However throughout much of Africa this test is so expensive it is out of the realms of possibility.

I feel anxious about the amount of work that is still needed to fund hepatitis B care. There is little political will and often hepatitis B programmes rely on external funders with their own agenda who may at any moment decide to withdraw support. Basic clinical care is not reaching many communities in low resource settings. They are not being tested, they are not being vaccinated with financial and geographical restrictions often making these things unrealistic. This is unacceptable in a world where there is an effective vaccine, a cancer preventing vaccine. Care needs to be funded, it needs to be decentralised and treatment should be available, specifically for HBV mono-infection, rather than getting underhand, leftovers of HIV treatment programmes. People living with hepatitis B need to be given a voice, hepatitis B is here, it is killing people, and something has got to be done.