When Desmond Pedro (30) discovered a strange hardness under his ribcage, the unemployed father of two was preparing for a fresh start on a skills course in Cape Town. Little did he know that he would soon die of liver cancer caused by undetected hepatitis B, writes Sue Segar for Spotlight.
Pedro was hoping to learn skills on a government-sponsored boiler-making course, to help support his family, but the strange condition worried him. When he 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 insisted on a scan. Two weeks later, 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 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 – 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 was tested. “My youngest brother, Johan, and I both 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, in what’s 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. 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 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.
Professor Mark Sonderup, Associate Professor in the Department of Medicine and Division of Hepatology at the University of Cape Town, said with chronic inflammation in the liver, the body’s attempt to heal the inflammation drives scarring, or fibrosis, of the liver. Over 10, 20 or 30 years, he says, there’s a serious risk of cirrhosis.
“The other risk of hepatitis B, which increases dramatically as the scarring worsens, is that because the virus is a DNA virus and inserts itself into the DNA of the liver cell, it dramatically increases the risk of liver cancer which is why hepatitis B accounts for most liver cancer in the world.”
Sonderup says hepatitis B is endemic in South Africa and the region, with the chronic infection rate being just below 5% – suggesting there are around 3m people with the infection.
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 fewer 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.
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.” Tenofovir is also part of standard HIV treatment in South Africa. As such, it is taken by more than 5m people in the country, some of whom will 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 dying was about two months.”
Mario has become a passionate advocate for hepatitis B testing. “It takes just a simple blood test, and if it’s caught in time, one small tablet daily. There are no side effects,” he says. He believes nurses testing for HIV should be testing for hepatitis B at the same time.
A highly effective vaccine
Fortunately, many South Africans, especially those under 30, would have been vaccinated against the hepatitis B virus as babies.
The government began rolling out the vaccine in 1995, starting with a three-dose schedule for babies, administered at six, 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% 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.
So 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 six 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.
“Instead of starting with the implementation of the universal hepatitis B birth dose vaccination, we test all pregnant women for the hepatitis B virus, treat those who are hepatitis B positive (and HIV negative), and offer the hepatitis B birth dose vaccine to newborn babies of pregnant women who tested positive for hepatitis B,” she says.
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% 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 1m births per year and hepatitis B prevalence of around 5%, every year in the region of 50 000 women with the virus are giving birth in South Africa.
What to do
Sonderup says the solutions are neither complex nor expensive. “First,” he says, “we need to fully implement the universal birth dose vaccination; second, we must ensure children complete their vaccine schedule in total; third, we need to screen pregnant woman and link them to additional care.”
In a country where almost 5% of people have the virus, everyone should be screened for hepatitis B at least once, like regular HIV testing. “This can be done through a simple finger prick test and it’s not expensive.”
The key 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 SA 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,” she says.
“There is still insufficient knowledge both among healthcare workers and within communities about hepatitis B. For now, patients are referred to hospitals … but the reality is that, if primary healthcare staff are managing HIV patients, they can manage hepatitis B patients.”
She adds that they are trying to integrate hepatitis into other health programmes, like those for maternal and child health.
‘Everyone should know their status’
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.
See more from MedicalBrief archives:
African countries pledge to end ‘silent disease’
New vaccines offer hope for Hepatitis B treatment in SA
Experts call for hepatitis B birth-dose vaccine
SA children should be vaccinated against Hepatitis B at birth