Missed, misunderstood, and deadly: A Cape Town family's heartbreak with hepatitis B
The strange condition worried him. When Desmond first went to a clinic, nurses said it wasn't serious and gave him laxatives for constipation. He returned three times and got the same response.
On his fourth visit, Desmond's wife went with him, and she insisted on a scan. Two weeks later, while on his way to college, he returned to receive the results. His older brother, Mario tells the story: 'When he arrived, the clinic staff wouldn't let him leave. An ambulance took him to Tygerberg Hospital. We visited him that night but were told nothing. We felt helpless.'
About a week later, Desmond asked Mario to meet him at Tygerberg's oncology unit, where a doctor delivered the news of his diagnosis. 'When I arrived, he was in agony and couldn't stand up straight. This had all happened within two to three weeks. A porter brought a wheelchair, and we went into the doctor's office where the doctor told us hepatitis B had brought on Desmond's liver cancer.'
Hepatitis means that the liver is swollen or irritated. This can happen for many reasons, such as infections from viruses or bacteria, parasites, injuries, or when the body's immune system mistakenly attacks the liver. Viral hepatitis is a type of liver inflammation caused by a virus. There are five main types: A, B, C, D and E. As Spotlight previously reported, new, highly effective cures for hepatitis C are slowly becoming more widely available in South Africa.
WHERE DID IT COME FROM?
Until Desmond's cancer diagnosis, he had no idea that he was carrying the hepatitis B virus in his body, nor where he contracted it. The virus is transmitted from person to person through blood, semen or other body fluids. It can, for instance, be passed from pregnant women infected with the hepatitis B virus to their babies during childbirth, through sexual contact with an infected person, sharing of needles carrying traces of infected blood, and accidental needlestick injuries in health workers working with people who have the virus.
After Desmond's diagnosis, his entire family were tested. 'Both myself and my youngest brother, Johan tested positive for hepatitis B. To this day, we don't know where we got it or if we ever had the vaccine,' says Mario. 'At the time, I was 33. My mother was negative, as were our wives and all the children. For Desmond, it was too late.'
Once infected, some people have strong enough immune systems to fight off the infection and usually clear it within six months. This is called acute or short-term infection. People who get infected as adults normally have acute infections.
In long-term or chronic cases, it lasts more than six months and can lead to liver failure, liver cancer or cirrhosis – a condition where scar tissue has replaced healthy tissue to such an extent that the liver can no longer function. The younger a person is when they contract the virus, the higher their risk of the condition becoming chronic, particularly in the case of newborn babies or children under five. In most cases, people with chronic infection show no symptoms for years until they become seriously ill from liver disease.
A SILENT KILLER
One of the reasons that viral hepatitis can go undetected, as it did for Desmond, is that it is often asymptomatic. Symptoms, for those who do get them, can start as soon as two weeks after infection and include stomach pain, joint pain, fever, extreme fatigue, dark urine and jaundice – a yellowing of the skin and whites of the eyes.
Professor Mark Sonderup, Associate Professor in the Department of Medicine and Division of Hepatology at the University of Cape Town, explains that with chronic inflammation in the liver, the body's attempt to heal the inflammation drives scarring, or fibrosis, of the liver. Over ten, twenty or thirty years, he says, there's a serious risk of cirrhosis.
Sonderup says hepatitis B is endemic in South Africa and the region. He cites figures pegging the country's chronic infection rate at just below 5% which suggests there are in the region of three million people living with the infection in South Africa.
MOST CASES CAN BE TREATED
Chronic infection can usually be treated successfully with antiviral medicines if diagnosed in time. These medicines have to be taken for life since they suppress, but do not eliminate the virus. For acute infection there are much fewer treatment options. Those with serious liver damage often need a liver transplant.
Since their diagnosis, Mario and Johan have been going to the Groote Schuur Liver Clinic where he says they are in good hands. 'They've been there for us from the start,' says Mario.
The brothers are both on tenofovir, an anti-retroviral used to treat chronic hepatitis B infection. 'We take one tiny tablet a day, which suppresses our viral load and has no side effects. I take my tablet religiously at the same time every night.' Tenofovir is also part of standard HIV treatment in South Africa. As such, it is taken by more than five million people in the country, some of whom will happen to have undiagnosed hepatitis B infection.
Sadly, Desmond's diagnosis came too late for antiviral treatment to save him.
'I'll never forget the look on Desmond's face when the doctor said there was nothing they could do,' Mario recalls. 'The liver cancer was aggressive. He died at home about four weeks later. The time between getting his results and passing away was about two months.'
It is for this reason that Mario has become such a passionate advocate for hepatitis B testing. 'All it takes is a simple blood test, and if it's caught in time, you take one small tablet daily. There are no side effects and you're good to go,' he says. Mario reckons nurses testing for HIV should be testing for hepatitis B at the same time.
A HIGHLY EFFECTIVE VACCINE
One piece of good news is that many people in South Africa, especially those younger than 30 years of age, would have been vaccinated against the hepatitis B virus as babies.
The South African government began rolling out the vaccine in 1995, starting with a three-dose schedule for babies, administered at 6, 10, and 14 weeks.
'It took a while to reach full coverage across the entire country. To date, our numbers lag a little behind, in that full three dose coverage is somewhere in the mid 80 percent in South Africa,' says Sonderup. 'This is pretty decent, except that we do have babies born to women who are inadvertently chronically infected, and there's a full six-week period before the first dose of vaccine is given.'
In other words, there's a six-week gap before babies receive their first hepatitis B vaccine, leaving them unprotected during that time. This is why Sonderup recommends giving a vaccine birth dose within the first 24 hours after birth alongside the standard polio and BCG vaccines all newborns receive. 'This would be followed by the second, third and fourth doses at 6,10 and 14 weeks. This has been shown to completely shut down that potential six-week period where a baby may be exposed,' he says.
A PHASED APPROACH
Dr Kgomotso Vilakazi-Nhlapo, the top hepatitis official in the National Department of Health, agrees that a birth dose is important. However, she says that due to resource challenges, the department has opted for a phased approach.
According to Vilakazi-Nhlapo, this approach was implemented in April 2023 in all public health facilities but by the end of December 2024, they were only testing about 50% of pregnant women. 'This meant that women among the 50 percent who were not tested could be positive for hepatitis B and be transmitting the infection to their babies,' she says. 'Of course, it would be preferable to give a universal birth dose to all newborns, but, unfortunately, the budget and human resources remains an issue.'
Vilakazi-Nhlapo estimates that with around a million births per year and hepatitis B prevalence of around 5%, every year in the region of 50 000 women living with the virus are giving birth in South Africa.
WHAT TO DO
Sonderup says the solutions to South Africa's hepatitis B problem are neither complex nor overly expensive. 'Firstly,' he says, 'we need to fully implement the universal birth dose vaccination; secondly, we need to ensure children complete their vaccine schedule in total, thirdly we need to screen pregnant woman and link them to additional care.'
He also says that in a country where almost 5% of people are living with the virus, everyone should be screened for hepatitis B at least once as we do with regular HIV testing. 'This can be done through a simple finger prick test and it's not expensive. People should at least know their status,' Sonderup says.
South Africa's key hepatitis B policy document is the viral hepatitis treatment guidelines published in 2019. Sonderup, who was involved in the development of the guidelines, is concerned about its implementation. He blames 'policy inertia' and competition for limited resources for the country not having made greater progress against hepatitis B.
'But we can actually do a great deal with not very much, with significant impact, to eliminate a virus that continues to cause significant havoc,' he says.
'A SHORTAGE OF RESOURCES, STAFF AND SKILLS'
For her part, Vilakazi-Nhlapo blames a lack of 'resources, staff, and skills' for there not being more progress.
She says there is only one other person working with her on hepatitis at the national level, and no dedicated staff at provincial health departments. 'We work mainly with NGOs and civil society. Provincial physicians have helped us greatly to do our work but it's not enough,' Vilakazi-Nhlapo says.
'There is still insufficient knowledge both among healthcare workers and within communities about hepatitis B. For now, patients with hepatitis B are referred to hospitals … but the reality is that, if primary healthcare staff are managing HIV patients, they can manage hepatitis B patients,' she says. She adds that they are trying to integrate hepatitis into other health programmes, such as those for maternal and child health.
'EVERYONE SHOULD KNOW THEIR STATUS'
Back in Cape Town, Mario, now 45, says he feels healthy apart from the normal aches and pains associated with his age. He has become an advocate for more awareness about hepatitis B. 'We'd never have known we had it if this hadn't happened to my brother. It's a silent killer. Someone could be dying of it right now without knowing. Everyone should know their status,' he says.
This article first appeared on Spotlight. Read the original article here.
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