Around 3.5 million people are living with chronic hepatitis B in Uganda, according to the country’s ministry of health. But despite it affecting 10% of the population, many Ugandans don’t know enough about the virus that can be transmitted from mother to baby during birth, via the use of contaminated medical tools, razors and needles, or through unprotected sex.
Like many Ugandans, Kenneth Kabagambe’s understanding of hepatitis B was very limited until he was personally affected by it. “I lost a friend at university to hepatitis B, which I had little knowledge about in 2009.”
Kabagambe’s friend’s death prompted him to get tested for hepatitis B and the results revealed that he was living with the virus. Without any noticeable symptoms, Kabagambe, who was 25-years-old at the time, was surprised by the diagnosis. At first he found it difficult to accept and feared the worst.
“The doctor told me I might have acquired it while I was 5-years-old [or younger].
“I was confused because I started imagining how I was going to die a young man who had just graduated out of university.”
Once he came to terms with his status, Kabagambe told his family and friends. Some of them responded by revealing they too had the virus but had never disclosed it because of the stigma.
The death of his friend, his own diagnosis and discovering that a number of close relatives and friends were also living with the virus but too afraid to say all drove Kabagambe to devote himself to improving education about hepatitis. He is now at the forefront of the fight against hepatitis B in Africa.
Determined to ensure that those with the virus can access the support and information they need, Kabagambe established the National Organisation for People Living with Hepatitis B (NOPLHB) in Uganda. The non-profit advocates for hepatitis B funding, raises awareness and works to reduce stigma. With the help of Gilead, a biopharmaceutical company whose portfolio includes treatment for hepatitis B, NOPLHB also trains health workers to tackle the spread of the virus.
“We have been able to train 720 health workers and empower 480 community leaders through the Gilead community funded projects from 2015 and 2016 respectively,” says Kabagambe.
NOPLHB also helps coordinate national hepatitis B activities, workshops, community outreach, and the scaling up of free screening and testing services. And it offers counselling to help people living with the the virus.
Improving awareness
NOPLHB uses a mixture of traditional media and social media to get its message out, Kabagambe explains.
“The traditional communication channels have helped us to engage communities with different cultures and behaviours that put them at risk. We have been able to change their attitudes and practices.”
These practices include sharing of razor blades to shave hair, using unsterilised equipment for skin scarification and tattooing – common in the Karamoja region – and attributing the virus to witchcraft or poisoning.
NOPLHB plans to set up a $2m (£1.5m) fully equipped call centre to increase awareness of hepatitis B. However, the three year project faces funding challenges. “This is a huge investment which we think, if funded, can change [a lot] in communicating effectively about hepatitis B,” says Kabagambe.
Government support and cooperation is essential and Kabagambe has been working with the government to move the virus up the agenda. He was instrumental in establishing the ministry of health’s committee on hepatitis B, and the charity walk that resulted in the inclusion of the virus in the ministry of health’s budget for the first time.
Funding
As Uganda moves towards achieving the global hepatitis goals under the Sustainable Development Agenda 2030, the fight remains hobbled with inadequate funding, and limited access to diagnosis and treatment.
While Kabagambe is encouraged by the efforts to increase awareness, he recognises that there also needs to be support for people after they are diagnosed. “[Due to the] lack of a clear referral system, fake drug dealers have found the opportunity to exploit these desperate patients who develop complications from the drugs that are not recommended by doctors,” says Kabagambe.
These “fake drug dealers” are often presented as legitimate business. A number of health food companies and many local herbalists claim to offer cures for hepatitis B. The products are advertised on local TV and radio stations, which arguably makes them seem authentic to people with the virus who are desperate for treatment but too poor or afraid of stigmatisation to seek it safely.
The limited availability of sustainable funding for addressing hepatitis B in Uganda has also impacted Kabagambe’s organisation. “NOPLHB is purely run by volunteers and this has been a very huge setback in getting the best people to do the work,” he says.
“We lobby for a viral hepatitis global fund similar to that [for] HIV, given that now viral hepatitis contributes to 1.34 million deaths globally – higher than that of HIV, malaria and tuberculosis.”
Content on this page is paid for and produced to a brief agreed by Gilead, a sponsor of the Guardian’s Global Development Professionals Network.
Date of Preparation: October 2017 (HIV/IHQ/17-03//1363f)
