Shaibu Issa, a 29-year-old health advocate in Dar es Salaam, Tanzania, vividly remembers watching as his brother, Latifu Dini, suffered repeat stomach aches in 2017. A visit to a doctor and follow-up tests identified the problem; Latifu had chronic hepatitis B, a liver disease caused by the hepatitis B virus. Later, Latifu encouraged Shaibu to get tested; his result was also positive.
“I never showed any symptoms,” Shaibu said. “Even now I'm looking healthy, but I live with this disease. That's why we call hepatitis a silent killer.”
After being diagnosed, isolation and grief set in. Shaibu and Latifu were separated from classmates. Due to inadequate awareness and knowledge about the disease, health workers refused to touch them due to fears of contracting the disease and their community shunned them.
Recounting the pain he experienced, Shaibu said, “Viral hepatitis changed my entire life, because from there I started to face stigma. That’s when I started to understand the importance of how people should be treated.”
Credit: WHO / Vicky Markolefa
Caption: Shaibu Issa looks at an old photograph of his brother Latifu Dini, who passed away due to liver cancer resulting from chronic hepatitis B.
Beyond stigma, Shaibu and his brother faced another hurdle. The cost of treatment was more than their family could afford, and it required travelling to Dar es Salaam from their rural home near Mtwara in southern Tanzania.
The family sold everything and fundraised but it wasn’t enough to cover the brothers’ ongoing treatment, in addition to their university fees. Later, Shaibu and Latifu would overcome all odds and finish university, but Latifu would lose his life to liver cancer.
“After losing my brother, it was very bad because I believed I was next,” recalls Shaibu. “But I came to realize many people globally are suffering with this disease and face stigma and discrimination. My brother inspired me to take responsibility to represent these people.
I can't let many people die out there while I can speak,” he says.
Using social media to inspire change
An estimated 254 million people globally are living with chronic hepatitis B infection, and roughly 1.1 million people die each year from the infection, mostly resulting from cirrhosis or liver cancer. In Tanzania, there are roughly 1.9 million people living with chronic hepatitis B, and most of the tests and treatments for the infection are either unavailable or unaffordable.
Despite many people living the disease in Tanzania, few people are aware of how the disease is transmitted, its symptoms or how it can be prevented. This lack of awareness and resulting misinformation is a key reason people like Shaibu face stigma and discrimination.
For Shaibu, this presented an opportunity. When Shaibu was first diagnosed, “nobody talked about viral hepatitis,” he said. “The only information that prevailed was false information. I thought that if I needed to raise awareness to people, it's very easy to meet many people on social media.
Today, Shaibu uses multiple digital platforms and also speaks at conferences, schools and universities to raise awareness about the importance of getting vaccinated against the disease as well as getting tested and treated.
Credit: WHO / Vicky Markolefa
Caption: Shaibu Issa looks at an old photograph of his brother Latifu Dini, who passed away due to liver cancer resulting from chronic hepatitis B.
Since Shaibu was not vaccinated as a child against hepatitis B due to the vaccine not being available where he lived, he also works to educate parents about the importance of vaccinating infants at birth, as recommended by WHO.
A national plan to tackle hepatitis
To respond to the hepatitis burden in Tanzania, the Ministry of Health with support from WHO, developed the Integrated Health Sector HIV, Viral Hepatitis and Sexually Transmitted Infections National Strategic Plan, which aligns to the WHO Global HIV, Hepatitis and STIs strategies 2022-2030. In 2023, the country also launched a new integrated HIV and hepatitis programme known as the National AIDS, Sexually Transmitted Diseases and Hepatitis Control Program. This programme now plans, budgets and implements activities for each of the diseases in unison.
“We recognize the immense dedication of advocates like Shaibu, who are at the forefront of this battle against hepatitis in Tanzania,” said Dr Charles Sagoe-Moses, WHO Representative in Tanzania. “The ongoing collaboration between the Ministry of Health, WHO, and local advocates is critical to reducing the burden of hepatitis and achieving a world where no one suffers in silence.”
In addition, the Ministry of Health has updated integrated HIV and hepatitis guidelines and is continuing to increase awareness about viral hepatitis through mass, print and social media engagement, including through World Hepatitis Day activities.
The Ministry of Health is also providing hepatitis vaccination and treatment for at risk populations, such as, people who inject drugs, people with multiple sexual partners, healthcare workers, people living with chronic liver and kidney disease and diabetes, and immunosuppressed individuals, including people living with HIV.
With support from advocates like Shaibu, as well as efforts by the Ministry of Health, in partnership with WHO, the country is committed to fighting hepatitis. For Shaibu, this would be his dream.
“My main goal is to make Tanzania, Africa and the world free of hepatitis by encouraging people to get tested and to be vaccinated, but also those who are already infected to access timely treatment,” he said.
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