HepEquity Blog: Meet Shaibu Issa
I am Shaibu Issa,
and this is my family. We live in a rural area of the Mtwara Region in Tanzania, and all of our lives depend on agriculture. Agriculture is the only thing our father can do to pay our school fees, and buy food and medicine when we get sick. This picture was taken before hepatitis B took one of us, leaving us broken and bereft.This story is my lived experience with hepatitis B. It took my brother’s life and left me a chronic patient who lost access to treatments, due to the persistence of poverty in our family.
In 2017, when we were in high school, my brother was tested for hepatitis B after feeling abnormal stomach pains. After that, he advised me to do the same. I went to the hospital and found out that I was also infected. Sadly, what followed was stigma, social isolation and discrimination from people around me, including health care workers, teachers and other people who knew we had been affected.
This stigma comes from poor understanding and awareness about hepatitis B in my communities. Most people who are diagnosed with hepatitis B become isolated in all fields of life, including socially and academically.
My brother and I were required to study by ourselves; everyone was afraid to get close to us. Sometimes, even in the hospital, physicians kept us quarantined in a small darkened room. We were labeled as having a rare disease that could kill those who came into contact with us, and we were left without treatment.
This stigma is present throughout Africa. But in addition to the isolation my brother and I faced, it was difficult finding treatment, because hepatitis B is a very costly disease, especially in Africa. My family sold everything they had including their land and livestock, to cover the cost of treatment. It was never enough, so we tried fundraising from people, organizations and schools. Eventually, we felt the cost of treatment was too much.
Around that time my brother had already developed cirrhosis, and he was admitted at Muhimbili National Hospital in Dar es Salaam. We tried to cover these costs of his hospitalization and treatment, but we fell short. At the time, my brother and I were at University, so it was very stressful to cover the costs of hepatitis B and being in school. In addition to these difficulties, many people stigmatized our illness. They felt we had a very bad disease that could affect and kill them just by associating with us. We became isolated from everyone, just because we were infected with viral hepatitis B.
My brother and I lived hopeless life. We were waiting to die, because we lacked access to treatment and medication, and we had no money left to attend hepatology clinic. We had no one to support us psychologically, as the only people who came near called us names and predicted our death. We were surrounded by grief.
We did manage to finish University, then went back to the village to hide our faces from the people who depressed us with their stigmatization and discrimination. My brother’s condition became critical, and he was admitted to the hospital. After just three months, I lost my brother to liver cancer.
I chose to be an Advocate.
Throughout almost five years of struggling with hepatitis B, and even after losing my brother, I never saw anyone speak out about viral hepatitis or share helpful information. Some people share misinformation that makes people avoid learning the reality of this disease. I decided to become an advocate. I want to encourage testing, management and prevention. After gaining a better understanding, I saw an opportunity to share accurate information.
I started social media account on Twitter, Instagram, LinkedIn and Facebook. More than 100,000 people follow me. They need psychological support, understanding and accurate information. People want better information, because so many are directly impacted by hepatitis B in our communities.
Many people living with hepatitis B reside in Africa: almost half of the total number of worldwide cases are found in here. But very few people know about hepatitis B, despite the reality that every 30 seconds, someone dies from hepatitis complications.
We need to increase awareness of accurate information, rather than amplifying stigma and discrimation. We need to do more advocacy to save millions of people and prevent further infections from spreading through ignorance.
I know, because I lost my brother to hepatitis B, and I myself live with this disease. I want to talk to you about some ways we can prevent the spread of hepatitis B and make treatment more accessible, so fewer families will suffer as mine has.
First, Vaccination: There is a vaccine for hepatitis B, but birth dose is not available or accessible in most countries in Africa. The most common way hepatitis B is transmitted is from mother to child during birth. This can be prevented with a timely birth dose of hepatitis B vaccine. We need greater access to birth dose in Africa.
Second, Testing: Most people in African do not know they are infected with hepatitis B. We need more accessible testing and linkage to doctors for management. We also need protections to prevent discrimination and stigma against people who test positive.
Third, Treatment and Monitoring: Treatment and management of hepatitis B is very expensive in Africa and many other low and middle income countries around the world. We need better access to affordable treatment, diagnostics and doctors who can manage and monitor hepatitis B, giving hope to those who test positive to live longer, healthier lives.
You can support my efforts to educate others about hepatitis B by following me on Facebook, Instagram, Twitter or LinkedIn.
Shaibu Issa lives in Tanzania; he is a member of the Organization for Medical Outreach to Communities and a member of the HBV Global Community Advisory Board with the Hepatitis B Foundation.