How stigma holds back the ‘final push’ to eliminate leprosy in Tanzania

Juma*, a newly diagnosed leprosy patient in Dar es Salaam, doesn’t want his real name or face printed in a newspaper, his problem? Stigma.

He fears that his fellow men, who always believed he was suffering from a common skin disease, could segregate him upon reading his story and learning that he actually had leprosy—a curable disease that can lead to disability.

Juma, a hawker in the city, walks several miles a day, selling toilet soap on the streets. He always wears sandals but his feet bear deep wounds that are not attributed to the long walks that he endures each day.

Some of his toes appear to be almost getting chopped off naturally but he pushes through the daily struggles as he moves from door to door to make ends meet.

He tells Your Health that his problem started about three years ago and he didn’t think it was a condition that would force him to go a proverbial mile to seek treatment at a regional hospital.

“I spotted small patches on my hands initially. That was long ago, it’s only last year when I reported to a dispensary in Chanika and I was given medications to dry up the wounds. I didn’t get any better. The medics didn’t realise it was leprosy by then,’’ he recalls.

When Your Health caught up with Juma on Tuesday last week at Amana Regional Hospital in Dar es Salaam, both his hands and feet had been partially “eaten away” by the disease, though he was not coughing.

According to medical sources, leprosy spreads between people and this is thought to occur through a cough or contact with fluid from the nose of an infected person.

Contrary to popular belief, it is not highly contagious but it remains an infectious chronic disease—like Tuberculosis (TB). Like TB, the disease has been found mainly to affect people who live in poverty and crowded areas.

The two diseases, TB and leprosy share things in common. Both are caused by the same genus of the bacteria—known as the Mycobacterium and here in Tanzania they are dealt with under the same programme, the National TB and Leprosy Programme (NTLP).

The fear of disclosing the disease

On Tuesday, Juma had just been diagnosed with leprosy when he spoke to Your Health and he was still trying to come to terms with the reality. However, he vowed not to tell anyone in his neighborhood about his predicament.

“It’s only my wife and my aunt who know that I actually have leprosy right now. I want this to be kept a secret,” he says as he smiles off during the interview.

He had just received his first dose of Multi-Drug Therapy (MDT), which he will be taking for the next one year or so to cure him of the condition. His condition had advanced, so he needed long duration treatment. With MDT, Juma is expected to be completely cured of the disease.

The 34-year-old resident of Chanika says, “I grew up hearing frightening and derogatory stories about leprosy. I feel embarrassed if it’s made public that I have the disease.”

“Where I come from”, he says, “There is a Kiswahili saying which goes, muogope mtu mbaya kama ukoma,”—loosely translated as “a bad person should be feared and avoided like leprosy.”

Juma says he started feeling ashamed after his doctor broke the news to him that he actually had leprosy. “At a dispensary near my home, one health worker had suspected this disease but I didn’t think it would turn out so,” says the father of three.

His only relief is that the disease is painless. Leprosy targets the nervous system, especially the nerves in the cooler parts of the body - the hands, feet, and face, so the patient’s limbs become numb.

But according to medical experts, the loss of pain complicates the treatment. The leprosy-causing bacteria—the Mycobaterium Leprae, usually invade and damage the nervous system, rendering the affected limbs painless.

For Juma, the loss of pain and sensation is a good thing. “I don’t feel any itching. I have wounds in my hands, on my back and the feet but I work and live my life normally—without pain.”

But, painless feeling makes Juma and many others afflicted by leprosy not to seek healthcare services timely, according to Juma’s doctor, Elia Mbando, who is also Amana Regional Hospital’s Tuberculosis and Leprosy Co-coordinator.

Final push to eliminate leprosy

Dr Mbando says the healthcare seeking behaviour of people affected by leprosy, coupled with the stigma attached to the disease have made it difficult for Tanzania to attain the target dubbed, “The Final Push to Eliminate Leprosy.”

Dr Mbando further adds, “You see, patients tend to seek healthcare at hospitals when they feel pain or see blood coming out of their skin. With leprosy, the victim neither feels pain nor such alarming blood is seen.”

As a result, he says, most leprosy patients end up with disabilities due to complications of the disease. “Most of them report to the hospital and report a long history of using anti-fungal medications before they sought proper diagnosis,’’ he says.

Experience shows that in certain communities here in Tanzania, suffering from leprosy is akin to being “cursed” and according to Dr Mbando, the deeply entrenched beliefs make victims hide in communities and continue to spread the disease to other people.

Let’s not ignore a growing leprosy problem

Efforts to try and reach every patient with leprosy have not yet paid off, according to various studies but the overall prevalence of the disease has showed a steady decline since 2002, according to the National TB and Leprosy Programme(NTLP).

Juma was only the second case of Leprosy to have reported at Amana in the entire month of January. Only 9 patients were diagnosed at the hospital in 2016. Most of them, according to data, are adults, says Dr Mbando. “It’s very rare to get children,’’ he points out.

Dr Mbando cautions that the fact that not many cases are recorded does not necessarily mean we should celebrate that the cases have gone down.

“Many people with the disease still fear or they see no reason to come to hospital because leprosy is painless. Some just decide to live with the disability,’’ he says.

According to data obtained from NTLP, the prevalence cases and detection ratio has remained about 1 between 2004 and 2010 suggesting that patients are timely removed from the register after completing their treatment.

Twenty six years ago, the World Health Assembly passed a resolution to “eliminate” leprosy as a public health problem by the year 2000.

Elimination of leprosy is defined as a registered prevalence rate of less than 1 case per 10,000 persons. The target was achieved on time but in certain regions in Tanzania, the struggle with cases of the disease prevails.

In 2006, the rate of elimination of the disease in Tanzania was 0.9 per 10,000 people affected but by the year 2016, the rate had gone down to 0.4 per 10,000 people affected.

While in Lindi Region it’s 1.7 and Rukwa 1.6, in three other regions things are different. There is a prevalence of 1.0/10,000 namely in Ilala (Dar es Salaam), Morogoro and Mtwara. The remaining have already achieved the global target of 1/10,000 population.

The Minister for Health, Community Development, Gender, Children and the Elderly, Ms Ummy Mwalimu says that more efforts needs to be done in about 9 most affected districts of the country—Liwale, Lindi Municipal, Lindi Rural, Ruangwa, Newala, Nanyumbu, Nkasi, Mkinga and Muheza.

She told Your Health about the ongoing efforts by the government to improve public health education, with emphasis on early identification of signs and symptoms, as she expressed optimism to eliminate the disease by 2030.

“Further studies on new innovations including the use of chemoprophylaxis and strengthening surveillance and data monitoring systems are highly needed,” she said in an interview with Your Health ahead of the World Leprosy Day.

*(not his real name)