Destigmatizing leprosy

(Article originally posted on Philippine Online Chronicles)

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.

leprosy

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.

But Dr. Belen Lardizabal-Dofitas, current Vice-President of thePhilippine 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 calledMycobacterium 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 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

leprosydamage

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 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 Societymembers 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 andclofazimine 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:

“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.”

MDTpack

“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:

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

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.

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.

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” froPhilippine Leprosy Mission / “MDT” from WHO. Under public domain.

 

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Written by Mec Arevalo. 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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