Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

Leprosy is known as the “the oldest recorded disease”, with reports going back to as early as
1350 BC in Egypt. During Biblical times, lepers had to be segregated and announce themselves
“unclean” to people who might mistakenly approach them.

Indeed, most of us know leprosy based on images portrayed in the Bible and in movies – a
disfiguring contagious disease that required isolation.

And the stigma of leprosy goes on up to the present day.

Mang Lando , disfigured by leprosy, takes refuge in the darkness of Sta. Cruz, Manila’s alleys.
Juan, who was diagnosed in 2000, lost his home, his wife and was turned away by his own
parents. He even contemplated on taking his own life several times.

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Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

But Dr. Belen Lardizabal-Dofitas, current Vice-President of the Philippine Leprosy Mission
(PLM) and the Chair of its Program and Resource Development Committee, hopes to shed
more light and help destigmatize
leprosy
.

Fortunately, Juan found refuge in the Hansen’s Club, a support group for persons with leprosy
at the Philippine General Hospital. His daughter is being sent to school with the help of PLM.
Despite the heart-breaking challenges he went through because of leprosy, Juan is a living
example that life can go on.

Definition

According to Dr. Dofitas, leprosy is an infectious disease of the nerves and the skin caused by a
bacterium called Mycobacterium leprae, oftentimes manifesting as whitish or reddish patches or
raised lesions (plaques, nodules). There is a definite
loss of sensation on the skin lesions, as well as loss of sweat and hair.  The nerves supplying
the face, hands and feet are often invaded by the leprosy bacteria and damaged by
inflammation, resulting in numbness in the palm or soles, weakness of the eyelids, or feet. This
leads to nerve damage ( neuritis and
neuropathy).  A patient may well develop deformities such as “claw hand” or “drop foot”,
blindness as well as incur injuries if the disease is left untreated.

Also known as Hansen’s Disease after the Norwegian physician who identified the bacteria,
this chronic disease is more popularly referred to as “ketong” among the Tagalogs, and “sanla”
or “kulion” in other parts of the Philippines. People are encouraged to refrain from using the
term “leper”, and instead use “person with leprosy” as a less discriminatory term.

Transmission

Contrary to popular opinion, Dr. Dofitas says that, “leprosy is NOT a highly contagious
disease. Only a small percentage of people

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Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

exposed to the bacteria will actually get sick because most of us have immune systems that can
get rid of the bacteria once it enters our bodies.“  Repeated exposure to leprosy bacilli is
required before one gets infected.

This debunks the myth that just being touched by someone with leprosy will give someone the
disease. In fact, around 95% of people coming into contact with the disease will not get infected.

The leprosy bacteria enter our bodies in the same way that tuberculosis does:  through the
inhalation of droplets carrying the bacteria expelled by untreated leprosy cases with a lot of the
bacteria in their nasal passages and mouth.

Detection

M. leprae is a slow-growing bacterium, taking about 2 -5 years before symptoms show. Dr.
Dofitas, who is also adviser of the PGH Hansen’s Club support group for families affected with
leprosy, says that leprosy is diagnosed based on the typical skin and nerve signs or through the
detection of the bacteria in the skin or nerves.

Properly trained barangay health workers in the country may even be able to recognize a
leprosy case and immediately refer patients to health centers and hospitals equipped with the
dermatologic testing and treatment facilities. Further testing such as skin biopsies or slit skin

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Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

smears can be done to confirm the diagnosis by local doctors or public health service providers.

Dr. Dofitas adds that health facilities staffed by dermatologists who are Philippine
Dermatological Society
members would fare well in leprosy’s early detection and treatment. Because leprosy manifests
on the skin, dermatologists often become the lead physicians managing the care and treatment
of people with leprosy. This sometimes requires referrals to other specialists like eye specialists
to ensure a patient’s eye does not get affected by the disease, rehabilitation medicine
specialists when a patient already has muscle weakness or deformities, and internists if there
are kidney or heart problems in the patient.

Dermatologists also end up playing the role of counsellor to patients and their families as
patients initially get depressed upon hearing the diagnosis. The patients’ depression and
anxieties often interfere with their compliance with treatment.

Treatment

The discovery of dapsone as a medical treatment for leprosy at the close of World War II
meant that leprosy patients did not have to be segregated in leprosy colonies anymore, as was
done at the Culion Leper Colony and Tala Leprosarium (now Dr.
Jose N. Rodriguez Memorial Hospital
). Dapsone is used with
rifampicin
and
clofazimine
as a Multi-Drug Therapy (MDT) for leprosy since the early 1980s and has resulted in millions of
patients being effectively cured.

Once a leprosy patient starts antibiotic treatment, he or she is rendered non-infectious after a
month or so as most of the bacteria are already killed. MDT should be taken for 6 or 12 months
depending on the type of leprosy.

Dr. Dofitas also shared statistics from the World Health Organization (WHO) website on the
number of patients who have benefited from Multi-Drug Therapy:

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Destigmatizing leprosy

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Saturday, 10 April 2010 12:00 AM

"Over the past 20 years, more than 14 million leprosy patients have been cured, about 4 million
since 2000.

The prevalence rate of the disease has dropped by 90% – from 21.1 per 10,000 inhabitants to
less than 1 per 10,000 inhabitants in 2000.

Dramatic decrease in the global disease burden: from 5.2 million in 1985 to 805,000 in 1995 to
753,000 at the end of 1999 to 213,036 cases at the end of 2008.

Leprosy has been eliminated from 119 countries out of 122 countries where the disease was
considered as a public health problem in 1985.

So far, there has been no resistance to antileprosy treatment when used as MDT.

Efforts currently focus on eliminating leprosy at a national level in the remaining endemic
countries and at a sub-national level from the others."

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Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

“Free MDT has been supplied to country governments through donors of the WHO,” adds Dr.
Dofitas, “but there can be no real eradication of a chronic disease such as leprosy.  We can only
aim for a degree of control in the number of new or existing cases such that the disease will not
be considered a public health problem anymore. WHO set a benchmark of 1 case per 10,000
population as a sign of leprosy elimination.  The Philippines achieved this nationwide
prevalence in the late 1990s.  However, the Philippines still reports the highest number of new
cases in the Western Pacific Region, indicating that leprosy still needs to be controlled in terms
of reducing the number of new cases.”

Despite leprosy’s low prevalence rate at the national level, five provinces and eight cities still
showed a prevalence rate exceeding 1 for every 10,000 cases in 2004
, prompting the
Department of Health
(DOH) to come up with strategic thrusts for 2005-2010 which include:

1. Ensure the availability of adequate anti-leprosy drugs or multiple drug therapy (MDT)
through the DOH as these are not available in the market;
2. Prevent and reduce disabilities from leprosy through Rehabilitation and Prevention of
Impairment and Disabilities (RPOID);
3. Improve case detection and post-elimination surveillance system using the WHO protocol
in all LGUs targeted for leprosy elimination;
4. Integration of leprosy control in other health services at the local level; and
5. Strengthen the collaboration with partners and other stakeholders in the provision of
quality leprosy services

Challenges and issues

With her years of experience in leprosy work, Dr. Dofitas states that, “Leprosy care ranges from
prevention, detection, treatment, and rehabilitation.  Even after the bacteria are all killed off by
antibiotics, we still have to help the patient return to the mainstream of society and become
productive again.” She grouped the challenges into the following major categories:

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Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

1.  Psychosocial problems

Leprosy bacteria can be killed by antibiotics, but the stigma of leprosy can last a lifetime. The
stigma from the disease has not been helped by stories, either related by health teachers
themselves or as depicted in films, of people with leprosy having pieces of flesh falling off.
There seems to be a general idea that people with leprosy are scary and beyond help so that
when some do get afflicted with the disease, or suspect it, it takes them a while before they
decide to get medical help.

Patients may feel depressed and discriminated against which may affect not just their progress
but their continuous treatment. Dr. Dofitas reports that they have had cases wherein some have
contemplated, or attempted, suicide and most prefer to be treated in health facilities away from
their area of residence.

Aside from psychosocial support, the leprosy patient needs spiritual enrichment so that they can
cope with the illness and heal. Leprosy-related stigma has caused unwarranted discrimination
of persons with leprosy.

Since 2006, Mr. Yohei Sasakawa has been leading a worldwide movement called “Global
Appeal to end stigma and discrimination of persons affected by leprosy”, an advocacy strongly
supported by the Philippine Department of Health and Philippine Leprosy Mission.

2.  Lack of health information about leprosy

Many Filipinos are not aware that leprosy is curable, just like any other infectious disease, and
that the treatment for it (MDT) is free and available in government health facilities. It is in this
regard that support for the National Leprosy Control Program (NLCP) and NGOs like the PLM
becomes important as these organizations are the ones disseminating correct information to the
public as well as implementing the country’s leprosy program.

3.  Socioeconomic problems

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Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

Like other chronic, disabling diseases, leprosy leads to socioeconomic problems. Complications
resulting in disabilities of the eyes, hands or feet can make people with leprosy lose jobs or
unable to earn decent income. Leprosy patients or their children often have to stop schooling,
which leads to less capacities and opportunities for a productive life. The poor may not have
access to the right information and treatment, resulting in delayed diagnosis and treatment,
leprosy complications, and subsequent loss of productivity.

PLM is one of the few NGOs that aim to help persons with leprosy, as well as those who have
recovered, reintegrate into their communities. PLM also extends educational grants to patients
and children of families affected by leprosy. “A good education increases their chances of
becoming confident and productive members of society,” says Dr. Dofitas. “We already have
some success stories with beneficiaries who have completed high school, vocational, or college
courses. Some cured patients are now respected members of their communities such as
councilors and teachers. But funding gets tight so we cannot support all who actually need
these educational grants.”

To continue providing education to the children of affected families such as Juan’s, PLM
actively seeks donations
. It needs around P7,540 to send a child through a year of High School and about P16,500 to
support a beneficiary  through one year of Vocational/Technical school.

PLM also supports Lorena , a 67-year old woman suffering from hypertension and other
leprosy-related complications. Juan and Lorena are just two among many beneficiaries of PLM.

4.  Local government support

Dr. Dofitas stresses the need for LGU support of NLCP projects for leprosy control to be
achieved. For the past decade, she has been advocating a Community Skin Health program for
each locality rather than just a leprosy control program, believing that through this approach,
public health concerns such as other skin diseases will be addressed together with leprosy. 
She believes that people are more likely to come forward with any skin disease and not be
afraid to consult if the focus is taken away from the stigma of possibly having leprosy.

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Destigmatizing leprosy

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Saturday, 10 April 2010 12:00 AM

5.  Health-seeking behaviors

Culturally, Filipinos tend to be ambivalent about their health, opting to wait things out or
self-medicate first before seeking professional help. This causes delay in the diagnosis and
treatment of leprosy patients which may result in irreversible complications. This also means
that untreated cases have been unknowingly infecting others, even loved ones, with the
disease.

Dr. Dofitas also thinks that leprosy services should be integrated with the general health
services of a health facility such as health centers and hospitals, with every Filipino encouraged
to voluntarily consult for any skin disease so that their problem can be diagnosed and treated
early. She stresses that early detection and treatment are still the most important strategies in
leprosy control.

6.  Logistic

MDT has been subsidized by philanthropic foundations such as Sasakawa Memorial Health
Foundation (Japan) or
pharmaceutical companies such as
Novartis
.  However, Dr. Dofitas reports that funds will soon run out and new patients may have
compromised treatment as they may not be financially capable of buying drugs for the 6- or
12-month treatment regimen.

Clofazimine , an affordable and effective drug that can help treat lepra reactions is also not
available to Filipinos with leprosy as the drug is not being sold in the Philippines.

For a long time, people with leprosy were thought to have been cursed as a form of human or
divine punishment. Thankfully, we now know that it is actually caused by bacteria, like many
diseases, and is curable. We also know that people with leprosy, like Juan and Lorena, can go
on to lead normal lives.

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Destigmatizing leprosy

Written by Mec Arevalo

Saturday, 10 April 2010 12:00 AM

What’s more, we know that there are people and organizations working for leprosy control in the
country. All they need is our help. We can either give donations or make sure our local
government supports their causes.

Most especially, we can echo what we know to others so that the stigma of leprosy will be
reduced and more people will actually come forward to seek help.

Photos: “ Leprosy - McLeod Ganj, India ” by Wen-Yan King , c/o Flickr. Some Rights
Reserved /
"Leprosy damage" fro
m
Philippine Leprosy Mission
/ "MDT" from
WHO
. Under public domain.

-----

Mec Arevalo is a serial blogger, stay-at-home Mom, breastfeeding peer counselor for
L.A.T.C.H. Inc. and volunteer counselor/facilitator for FAD Inc. Aside from being an
intentional parent and preparing their family for homeschooling, she does what she can
for her advocacies: breastfeeding, children-in-conflict with the law (CICL), HIV/AIDS
Awareness and sign language. She relaxes by Plurking and digiscrapping.

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