Mobilise public to join the fight against hepatitis B

In 2016, deaths caused by viral hepatitis surpassed all chronic infectious diseases, including HIV/Aids, malaria and tuberculosis, according to a Global Burden of Disease study. The prevalence of hepatitis B in Uganda stands at 4.1 per cent, which means that 1.75 million people are infected. This is according to a study carried out by the Ministry of Health in partnership with the Centre for Disease Control (CDC) and the World Health Organisation (WHO).

We do not have representative national data for Hepatitis C, but we have an estimate of 1.5 per cent. However, this data comes from blood banks, which are highly restrictive about the blood donors they use so it likely does not paint an accurate picture.

In 2005, the prevalence of hepatitis B was 10 per cent, so the situation is improving. However, there are no clear indications of why this figure has declined; those factors need to be explored through research. An important milestone occurred in 2014 when the government committed $3m towards the hepatitis response annually. Most of it is used for hepatitis B interventions. More work needs to be done on hepatitis C, especially around awareness, even among health workers.

Viral hepatitis patients face a great deal of stigma and discrimination due to lack of knowledge in the general public. We also need to mobilise the community to respond positively to hepatitis eradication programmes.

An organisation, the National Organisation for People Living with Hepatitis B (NOPLHB), was established in 2012 by a group of people that had tested positive for hepatitis B, including myself. We decided to commit our entire lives to advocating that hepatitis be included in the national healthcare agenda. When we started, there was no hepatitis programme at the Ministry of Health, but today, there are dedicated offices for hepatitis B and C at the ministry.

A lot of advocacy has been done by civil society groups like my organisation to mobilise communities and cultural leaders to hold government accountable for the harm caused by hepatitis in Uganda. The harm is not just through infections, but also from the other problems the high prevalence of this virus has caused such as domestic violence and health complications such as liver cirrhosis, liver cancer and liver failure.

It was through the engagements of civil society groups that the Ministry of Health was moved to begin developing programmes that would raise the profile of hepatitis and allocate funds for fighting the disease.

We have been able to train more than 5,000 health workers through support of sponsors such as Gilead Sciences. Our training is very basic. We equip them with general knowledge to detect hepatitis and determine the appropriate treatment interventions for patients eligible for hepatitis B treatment.

The private sector has generally been quiet on hepatitis, but recently, we have started to see private companies integrating hepatitis B screenings into their health programmes, and even the insurance companies now include hepatitis B treatment in their coverage.

The majority of Uganda’s population live in rural areas with limited access to healthcare. Therefore, as an organisation, we run community outreach drives. Most people in these areas do not like to go to the available public health facilities because they often find that services and medicines are unavailable.

So, we go to these communities and provide free hepatitis B screenings and affordable vaccinations. I believe that this is the best approach to helping us find the “missing millions” because so many people living with hepatitis are unaware of their status.

We haven’t been able to raise enough funds to achieve this yet, but our ambition is for these outreach initiatives to provide a one-stop centre for all the hepatitis B and C services such as screening and linkage to care with a clear follow-up and monitoring mechanism.

We just hosted the first African Hepatitis Summit in Kampala from June 18 to 20 and government was exceptionally supportive of the event. The summit was important because it brought together high-level stakeholders like Ministry of Health officials from different countries, WHO representatives, pharmaceutical companies and other strategic organisations.

In all, we hosted more than 500 delegates from across Africa and beyond. Our ambition for the next two years is for all African WHO member countries to have created their own action plans to eliminate hepatitis and have some countries fund these domestically.

There was also a declaration that was signed by hepatitis patients’ representatives engaging the WHO to provide technical support in the development of individual country action plans and strategies towards eliminating hepatitis. It also calls upon African governments to provide domestic funding, and for the African Union to provide political leadership and recognise hepatitis as one of the continent’s most urgent challenges.

We are going to continue engaging all the programme officials that attended the summit on what action they are taking in their individual countries. We also want to host this event every two years and keep bringing together countries that have shown interest and review our progress in eliminating hepatitis on the continent.

Uganda needs to keep involving the patient communities in all the programmes because at the end of the day, these programmes are meant to better the lives of patients. We need to scale up testing services to rural communities and create a clear referral system to link those who will test positive for hepatitis B to proper care and management.

If we are to reduce the burden of hepatitis B in this country and Africa more broadly, our countries need to introduce the hepatitis B birth dose vaccination for all new-born babies in order to prevent mother to child transmission, which is a major route of transmission. If we do this quickly, we will have really protected the young generation from hepatitis B and will have helped out the country/continent for many years to come.
Mr Kabagambe is the founding executive directorof the National Organisation for People Living with hepatitis B.