STORY HIGHLIGHTS
- Free-of-cost MDT provided by WHO has drastically reduced leprosy cases.
- WHO playing a catalytic role in strengthening capacity of leprosy affected people, getting them involved in leprosy programmes.
- WHO sets goals of zero child cases and with grade 2 disability by 2020.
Vagavathali Narsappa, 47, is a hero not only to people
affected by leprosy in his home city of Hyderabad, in central India,
famous for microchips and minarets, but also to tens of thousands of
people across the country.
Narsappa has been living with leprosy since he was eight. His fingers were affected and had to be amputated.
“I only have my two thumbs and little fingers.” The disability meant
that he could not work. There was a time when he begged on the streets.
But the rejection, humiliation and discrimination did not crush his
spirit or his love for life.
Currently, the president of India’s Association of People
Affected by Leprosy (APAL), Narasappa fondly talks about his wife,
Nirmillah. He met and fell in love with her at the leprosy hospital
where both were being treated. “We have been together almost 25 years,”
says the man who learnt to turn adversity into advantage.
Today, APAL is not only a source of immense support for people affected
by leprosy, its presence is increasingly being felt in policy circles
within the country and beyond.
Narsappa’s life story reflects the success and challenges posed by leprosy in the WHO South-East Asia Region.
Leprosy is a chronic infectious disease caused by Mycobacterium leprae.
It usually affects the skin and peripheral nerves but also has a wide
range of other clinical manifestations. Among communicable diseases,
leprosy is a major cause of physical disabilities. Timely detection and
treatment of cases, before nerve damage sets in, is the most effective
way of preventing disabilities due to leprosy. The year 2000 marked the
elimination of leprosy as a public health problem at the global level --
a significant milestone in history. Elimination means the prevalence of
less than one case per 10 000 population, globally. The elimination
target has also been achieved by most of the endemic countries at the
national levels by the end of 2005.
However, as Dr Poonam Khetrapal Singh, WHO Regional Director for South-
East Asia, says, “Though the prevalence has come down to less than one
case per 10 000 population globally, new cases are being reported from
more than 100 countries. As per the leprosy statistics published in 2014
by WHO, 215 656 new leprosy cases were detected worldwide. The WHO
South-East Asia Region alone contributed 155 385 cases, 72% of the
global leprosy case count.”
Significantly, leprosy is not uniformly distributed across the world.
More than 90% of 96% of leprosy is limited to 15 countries, which report
more than 1000 new cases annually. Even in these high endemic
countries, high leprosy prevalence is recorded in certain endemic
pockets, usually referred to as ‘hotspots’. Patients having visible
deformities in their hands, feet and eyes due to delayed detection,
experience stigma associated with disfigurement.
Globally, 13 289 such new cases with visible deformities or grade 2 disabilities were detected in 2013.
One of the biggest challenges in the battle against leprosy is the fact
that one in every ten new leprosy patients is a child. This fact needs
greater attention, as it can cause childhood disabilities not unlike
polio.
Over the last two decades, much has changed for the better. Narsappa
talks about lessening stigma and more awareness about leprosy. Then,
there was a breakthrough in treatment that dramatically reduced the
global leprosy caseload from 11 million to under a quarter million
today. In the early 1980s, WHO introduced the multidrug therapy (MDT),
which revolutionized treatment of leprosy. MDT offers multiple benefits.
The infected person ceases to be infective with a single dose; it is a
complete treatment for leprosy; and it reduces the risk of disabilities
and consequent stigma. In the long run, MDT reduces treatment costs on
the health system.
However, at the societal level much remains to be done. Laws exist in
many countries of the WHO South-East Asia Region that discriminate
against leprosy-affected persons and their families. These laws impact
chances of employment, marriage and other areas.
The WHO is working with governments and leprosy partners to reduce these
barriers. Hearteningly, groups such as the Association of People
Affected by Leprosy in India are robustly adding their voice to the
fight for the rights of those with leprosy to push for an end to this
stigma.
Early detection as a path to eliminating leprosy
“With the arrival of MDT, we have not seen any more new colonies of
people affected by leprosy in the country. That is great news. Now, as a
person affected by leprosy, my mission is to work towards zero
disability. For that to happen, we need to sustain the momentum by
removing misconceptions about leprosy among the public, have early
detection and voluntary reporting. School curricula should make children
aware that early detection can prevent disability. People affected by
leprosy should be made partners in policy making,” says Mr Narsappa who
is thrilled that in the colony of people affected by leprosy where he
lives, no children have leprosy.
“We are focusing on disclosure of cases to individuals, families and
communities. A coming out to doctors and medical staff can only happen
when we address the stigma of leprosy. We need to make the public and
practitioners partners in leprosy detection, treatment and cure to
eradicate leprosy,” says Dr Vijaykumar Pannikar who has worked as a WHO
expert for 35 years fighting leprosy and who led the successful trail of
multi-drug therapy (MDT).
Now retired, Dr Pannikar continues his work with WHO and partner
organizations in what he expects to be the final push. He feels that the
global community has overcome the hurdles of developing treatments and
ending leprosy is now within our reach.
Since 1995, WHO has provided MDT free of cost in all Member States. Now
that the number of leprosy cases has been drastically reduced, WHO is
flagging the need for renewed efforts and a focus on “zero” children
with deformities and detecting all new leprosy cases before disability.
The last mile in leprosy eradication will need enabling environments
where people with leprosy feel enabled to identify themselves and seek
treatment.
Leprosy elimination: a WHO flagship
In July 2013, 17 countries came together at the International Leprosy
Summit to commit to a global target of less than one case per million by
the year 2020 through the Bangkok Declaration.
The declaration recommends measures such as including leprosy-affected
persons in the leprosy control initiatives. “The WHO has played a
catalytic role in strengthening the capacity of people affected by
leprosy. Today, they are more involved in national and subnational
leprosy programmes and are better equipped to voice their demands for
more funds and human resources,” says Dr Sumana Barua, WHO’s Team leader
for the Global Leprosy Programme.
Reflecting the importance of partnering with people affected by
leprosy and their families is a WHO set of Guidelines for Strengthening
Participation of Persons Affected by Leprosy in Leprosy Service,
published by the WHO Regional Office for South-East Asia.
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Leprosy declared a Flagship programme for WHO SEARO targeting zero disability among new child cases by 2020
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“WHO SEARO has declared leprosy as a Flagship Programme that intends to
result in zero disability among new child cases by 2020. There will be
a greater focus on the social issue that has prevented leprosy
elimination - the stigma that prevents early detection and proper
treatment.
The WHO is working with The Nippon Foundation, Novartis Foundation for
Sustainable Development (NFSD), International Federation of anti-leprosy
associations (ILEP) and the networks of persons treated for leprosy to
create the roadmap for the last mile in leprosy elimination.
As WHO fine tunes its upcoming 2016-2020 Global Strategy for Leprosy,
the views of Narsappa and his colleagues are being sought in
consultation with that of other key stakeholders. The new WHO strategy
will aim to detect all cases before disability sets in and will focus on
zero disability cases among children by the end of the decade.