Leprosy still a concern in RI despite progress in treatment
By William Furney
TANGERANG, West Java (JP): For Julena, life is not so simple any more. Gone are the days she played carefree with friends, not thinking too much about the future, merely enjoying her youth.
All that is gone now.
The strikingly pretty 17 year old now spends her days confined to an iron hospital-regulation bed, unable to walk and damning a disease that has robbed her of any chance of prosperity and happiness.
"I feel sad all the time because of what's happened to me. But I'm trying to be optimistic," she said.
Julena is not alone. She is but one of, according to the World Health Organization (WHO), 820,000 worldwide and 23,709 in Indonesia who are stricken with a crippling disease marked by a social stigma equal to that of AIDS in its early days and that many have long since forgotten about: Leprosy.
Julena has undergone four operations, two on her right hand to straighten her fingers and two on her right foot, in the 10 months she has been at Sitanala Hospital in Tangerang. Formerly a leprosarium, the hospital is the largest of three leper centers in Indonesia and admits patients suffering from other diseases as the number of those with leprosy has dropped since its foundation in 1951. But lepers continue to make up the majority of Sitanala's inpatients.
At one time affecting every continent on Earth, the scars of leprosy have lingered on in the minds of the populace longer than the blemishes on generations of sufferers. Like the black death, or the plague, leprosy carries with it all the preconditioned notions that are, in today's world, out of place. It's not modern, lacks the cache of other conditions that make the headlines and falls way short of the attention of celebrity causes. But it is still with us, and to a certain extent is proving difficult to completely eradicate.
"The number of cases in Indonesia is falling drastically," said Dr. Narasinha Reddy, a native of India and an expert on leprosy at the Indonesian office of the WHO. "Currently, 1.18 per 10,000 of the population is affected. Our target is below one per 10,000. When it drops to that level, leprosy will no longer be a public health problem. We foresee another year before we reach that level."
Data from the WHO shows that in the last 15 years, global prevalence has been reduced from 5.4 million patients to 0.82 million patients; that the total number of patients cured in that period is over 10 million; that 98 countries have reached elimination level; and that about 2 million lepers have been prevented from becoming disabled.
Up to the end of last year, the number of registered cases globally pan out as follows: Africa 68,457, The Americas 86,029, Southeast Asia 635,719, The West Pacific 19,487 and Europe 765.
With 23,378 people suffering from leprosy, Indonesia comes third on the list of registered prevalence and detection in the top 12 countries, after India with 557,200 cases and Brazil with 72,953.
Caused by a worm-like microorganism called the Mycobacterium leprae, leprosy is an infectious disease. It mainly affects the skin, peripheral nerves, mucosa of the upper respiratory tract and also the eyes, apart from some other structures of the body. Contracted by touch and more commonly inhalation of the airborne bacilli, most people are immune. Just a small number contract the disease: people whose immunity is weak, usually those living in run-down or poor areas where hygiene is not the number one concern.
Killed
After administering a multidrug treatment, the virus is killed in about two days. The course of treatment, however, can last up to one year in order to kill off any residual bacilli. However, if early treatment is not sought absorption occurs, where the bones of the fingers and toes and nose cartilage are slowly absorbed back into the body. A common problem with lepers is mutilation. The bacilli reside in the nerves, killing or severely damaging them. The victim feels no pain in those areas and can unknowingly cut or burn their hands or feet, leading to infection. And rats can gnaw at victims feet while they are sleeping and nothing will be felt.
Sanusi, 34, is currently in the post-operation ward at Sitanala Hospital. He has just undergone an operation on his left foot, to try and right it from falling down. His left leg has been amputated below the knee. From Bogor, West Java, he contracted leprosy 13 years ago and is a regular patient at the hospital. "I'm sad all the time; I have no life. Look at me, I'm 34 and not married -- there's no future for me," he said, wincing in pain from his recent operation. "There's no way for me to earn money. I have to ask for some from my family and they think I'm a parasite anyway." He said one of the things that made him most sad was that his family never came to visit him at the hospital.
At the back of Sitanala Hospital is a kind of cooperative farming enterprise. Ex-lepers wander about tending, among other things, lettuce plants, cabbage and bay leaves. According to Dr. JP Handoko Soewono, the vice director of the hospital, many patients, when cured, simply refuse to leave and stay for many years. One "patient" has been at the hospital for 10 years. "They stay here rent-free," he said. But the former lepers don't sell the produce at the local market themselves -- they sell through an intermediary, and Dr. Handoko says they keep the money themselves. The hospital charges patients Rp 1,000 per day but some cannot even pay that amount and are treated for free.
Sitanala's reaction ward is where two brothers are currently undergoing treatment. It's called a reaction ward as patient's bodies are reacting to dead bacilli which release antigens, or foreign bodies, thereby creating an imbalance in the immune system. Usually lasting for about 2 to 3 months, the patient's system is massively run down afterward.
Wisnu Agung Riadi, 25, has been in the reaction ward for the past two months. A native of Jakarta, he sits on his bed, looking downcast. His nose has almost disappeared -- only a snub remains. His fingers are horribly twisted and curled, and there are open sores on his knuckles with blood seeping out. All over his body the skin is unbearably dry. "I've had this for about 3 years and had been going to the local puskesmas (health center). They didn't know what was wrong with me; they said I had an allergy. In January (this year), I went to see a skin specialist and he told me I had leprosy. I was so shocked."
Happy
He said he felt happy at the hospital but was ashamed to return home as many people in his community think leprosy is a communicable disease, whereas he has learned it is not.
"I come from a slum area and my father is a bajaj driver. They are so ashamed and want to reject me. They only come here to pay the monthly fee of Rp 30,000 and then leave; they don't want to talk to me."
Of the eight children in Riadi's family, three have contracted leprosy. One brother lies crossways in a bed beside him, motionless and silent, covering his body with a thin blanket and staring at the ceiling. Another brother has recovered and works as a security guard for a garage Jakarta, but he too has been shunned.
Chief of the department of leprosy, a subdirectorate of the Directorate General of Communicable Diseases at the Ministry of Health, Dr. Rosmini Day said her division is doing all it can to eradicate the disease. But there are problems. The subdirectorate is responsible for training doctors and staff at puskesmas throughout the country. "The turnover of doctors is high, particularly in the more remote areas such as Riau. And there is no NGO support in those areas," she said. The department is due to meet with the Jakarta administration's Social Welfare Agency in early August to hammer out ways to meet the demands of lepers once they are cured. As Dr. Rosmini said, "We provide all the necessary tools and information to aid treatment, but once patients are free of leprosy they face another battle in rejoining the community. The agency has given a commitment to providing funds for helping lepers afterward and we're going to tell them what need to be done."
It seems that for Julena and the thousands of others who are stricken by this most brutal of diseases there is hope on the horizon. But that doesn't go far in assuaging their fears and broken ambitions. For most victims, it's a case of too little, too late. "There's no future for me; my life is over," said Julena.