Leprosy still a concern in RI despite progress in treatment

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.