Living with a deadly expensive disease called Hepatitis B

Dar es Salaam. Living with Hepatitis B—a viral disease that has no cure yet—has been a tough experience for Omary Rashid*, a tuitor at the University of Dar es Salaam (UDSM), but, his ordeal has been compounded by the high cost of treatment for the infection.

Quite often, he has to juggle between meeting tight work deadlines at the campus, with his doctor’s appointments at Muhimbili National Hospital (MNH), where he goes regularly for medical checkups and treatment.

Forty year old Rashid is one among several Tanzanians living with the disease. Statistics from the Ministry of Health, Community Development, Gender, Children and the Elderly show that the prevalence of the Hepatitis B in the country is 8 percent.

This, according to experts, means that 8 out of every 100 people in the country are living with the virus, and, it’s 50 to 100 times more transmissible than HIV.

HBV is one among the five known hepatitis viruses: Hepatitis A, B, C, D and E. The most common are HBV, which is incurable and can be prevented through a locally available vaccine. And, HCV which is curable but has no vaccine available yet.

Globally, more than 2 billion people are infected with hepatitis B virus (HBV). Of these, 240 million are chronic carriers of HBV and are at risk of death from complications such as liver cirrhosis or liver cancer, according to World Health Organization (WHO).

Until today, Rashid cannot suspect how he might have acquired the virus. He is a computer scientist and his work does not expose him to a high risk of the infection.

According to health experts, the high risk groups are healthcare personnel, injecting drug users, sex workers and people who undergo blood transfusion regularly.

Dr John Rwegasha, a Gastroenterologist from MNH, has been treating Rashid for about three years now. One thing he has tried to figure out to no avail is where and how his patient might have gotten the Hepatitis B virus. He ‘s left with suspense, “Perhaps Rashid acquired it from his mother, during birth.’’

But, another question could be, how come Rashid was diagnosed with the disease in his thirties? Dr Rwegasha explains, “That’s the nature of this disease. It can be silent in the body even for 20 years without showing the symptoms.’’

“Most patients come to hospitals after having been infected for a long time. It’s the same case with Rashid. The condition could have been dealt with at the earliest stage possible if he was diagnosed early,’’ says Rwegasha.

According to medical sources, an acute infection with hepatitis B virus usually begins with general ill-health, loss of appetite, nausea, vomiting, body aches, mild fever, and dark urine, and this could progresses to being jaundiced (yellow colouration of skin and eyes).

Rashid began experiencing stomach pains, nausea and his body was aching for days. He believed he was suffering from malaria or typhoid. However, tests revealed neither of the diseases when he went to a clinic near his home in Mwanza Region, where he was living at that time. That was in 2010.

His condition got worse for weeks. He was referred to Mwanza Regional Hospital. “At one point, doctors at the Mwanza hospital thought my appendix could be infected with bacteria. So, I underwent an operation to remove the appendix. But they were wrong,’’ he recalls.

A Medical Officer at Bukumbi Hospital in Mwanza, Dr George Kanani, says there is shortage of diagnostic tools for Hepatitis in many upcountry hospitals

“It’s easy for health care workers in most rural hospitals to ignore Hepatitis when making orders for medical tests. There is a shortage of diagnostic kits and the disease is not given priority in the country,’’ he says.

For Rashid, it’s only until he went for further studies in China in the same year (2010) that doctors at a hospital in Chan Sha City suspected he could be suffering from Hepatitis. It had been left undiagnosed back home in Tanzania.

“I explained to them that doctors in Tanzania had not figured out my actual diagnosis. One doctor in China suspected Hepatitis B. I guess it’s because HBV is very common in China,’’ he says.

Hepatitis B is endemic in China, according to WHO data. Close to one-third of the people infected with HBV globally reside in China.

Rashid was advised to return to his country, postponing his study program. That was after he was found with the disease. “I was told to come back home and seek treatment. That’s according to their regulations.”

Since then, he has been seeking remedy. When Your Health caught up with him at MNH last week, he was attending his regular clinic visits. Rashid is given counseling to help him cope with the psychological challenges of living with an incurable condition.

Today, he looks happy.

“When I was diagnosed for the first time, it was challenging for me. I thought that was the end of my life and I had to deal with stress,’’ he says and adds that now he has turned into some sort of an expert on Hepatitis B. He then smiles, and continues, “I have learnt how to soldier on with it.”

For him, living with the virus has been like a “battle” where one must not give up. He has had to adjust his lifestyle as he tries to protect his liver from the risk of complications such as cirrhosis and cancer.

“Now I can’t taste any kind of alcohol like I used to do or choose what to eat freely. I exercise regularly. My lifestyle has entirely changed,’’ he says.

Rashid has now developed appetite for vegetables, non-salty food and fresh fruit juice, as opposed to his earlier taste of nyamachoma and beef soup.

“I am also trying everything I can, to build my body immunity so that it can fight off the virus naturally,’’ he says.

But his struggle to beat the virus goes beyond maintaining a healthy diet. He has had to switch from one type of medication to another in an effort to find a “perfect” remedy.

“I have to make sure that one of my family members, including my wife and children do not get infected. I know the disease is transmitted through body-fluid contact,’’ says the father of three.

About three years ago, his condition deteriorated. His doctors recommended a 12-month dose of Pegasys, a drug that could have effectively helped his body to suppress the Hepatitis B viruses significantly.

But when he inquired about the price of the medication at the pharmacy in Dar es Salaam, he learnt that a 6-month dose stood at a cost of Sh13.2million. This means that he needed a total of Sh26.4 million for a complete course of treatment.

“My medical insurance does not cover Hepatitis. Even if it did, the cost of the drug couldn’t be accommodated by my insurance premium,’’ he says.

“I was lucky that my office has an arrangement for handling such a matter. But the office agreed to pay for my 6-months dose.’’

Rashid did not complete his 12-month course of treatment as recommended by his doctors. He had to switch back to Anti-Retroviral medication, Tenofovir, which he can easily get through MNH.

He would have wished that the hepatitis B viruses get cleared away from his body fluids but that’s not possible, according to medical science.

According to medical sources, about 95 percent of people who become infected with Hepatitis B virus may recover and develop protective immunity against the virus.

But according to Dr Rwegasha, Rashid’s condition has now reached a stage where the viruses cannot be eliminated from the blood. He is suffering from chronic hepatitis B.

“About 5 per cent of people who are infected with Hepatitis B Virus, fail to eliminate the virus completely from their blood,’’ he says.

Chronic carriers of hepatitis B virus usually show no symptoms and can easily transmit the infection to other people, unknowingly.

“Such patients have to survive on drugs that can help them suppress the viruses within the body and prevent them from replicating,” adds Dr Rwegasha.

But the medication is expensive. So patients who are screened and found to harbor the virus, are given ARV medications such as Tenofovir and Entecavir and their course of treatment lasts for two years, he says. The ARVs have been approved by the WHO for treatment of Hepatitis B.

“The biggest challenge is that Hepatitis has not been prioritised in the national programs here in Tanzania. So, the medications are only available for HIV treatment and not hepatitis. As a hospital, we just go to lobby for our patients,’’ says Dr Rwegasha.

According to a study published last year in the BioMedical Central Journal, there are vaccination programs for healthcare workers against HBV and it’s a standard practice in many countries, including Tanzania.

However, the study, titled: “Prevalence of hepatitis B virus infection among health care workers in a tertiary hospital in Tanzania” shows that the vaccination programs are often not implemented in most resource-poor settings.

Health Minister Ummy Mwalimu said the government is now looking into ways of reviewing the 2007 Health Policy which will make Hepatitis one of the diseases of public health concern.

The government’s intervention, if successful, would eventually help to scale up programs for most poor citizens who lose their lives due to lack of vital medications against the disease.