Leprosy: Officially eliminated, but still present

Leprosy patients used to live in these chalets at the Sungai Buloh Leprosarium where they had their own isolated community. — Photos: Filepic

In his statement for World Leprosy Day on Jan 30, 2021, World Health Organization (WHO) Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa said: “I often talk about leprosy in terms of a motorcycle.

“The front wheel represents curing the disease, and the rear wheel symbolises ending discrimination.

“Only when both wheels are turning at the same time will we make progress toward our destination of a leprosy-free world.”

Leprosy (or Hansen’s Disease) is caused by a slow-growing bacteria called Mycobacterium leprae.

A Norwegian scientist, Gerhard Henrik Armauer Hansen, discovered the bacteria in 1873.

It can affect the skin, the lining of the nose, the eyes and the peripheral nerves.

It was once feared as a highly contagious disease, which had the ability to cause devastating deformities.

We now know that it does not spread so easily, and it can take many years for those with leprosy to develop the signs and symptoms of the disease.

It is also curable with prompt diagnosis and treatment with multi-drug therapy, and those affected can lead normal lives.

My interest in leprosy goes back a long way to my medical student days at Universiti Malaya.

The lush greenery surrounding the Sungei Buloh Leprosarium (officially known as the National Leprosy Control Centre) was stunning, and it left an indelible impression on me: that this beautiful place with rows of garden nurseries was home to people with le- prosy who lived in isolation from society for almost four decades.

That same interest was rekindled when I did my Master’s studies on leprosy in Surabaya, Indonesia.

Many of the patients came from Madura Island, and they would travel 95km to the hospital in the dead of night to avoid meeting people.

Face masks are fashionable nowadays, but at that time, it was used to cover up the patient’s facial disfigurements.

Female patients did the same with their scarves and hijab.

The global number of new cases of leprosy has remained stable – around 200,000 a year in the past decade – with India, Brazil, and Indonesia reporting 80% of the new cases.

An estimated two to three million people are living with leprosy-related disabilities worldwide.

New cases still detected

Malaysia has done well with the leprosy elimination programme.

In 1994, WHO declared that Malaysia had eliminated leprosy at the rate of 0.9 cases per 10,000 population.

The success is due to the dedication and hard work of the doctors, scientists, researchers, other healthcare professionals and all stakeholders engaged in caring for people with leprosy.

At the end of 2019, there were 382 registered leprosy cases in Malaysia, with 195 new cases diagnosed, including in children.

Transmission of leprosy to children is an indicator that the disease is still actively being transmitted within the community.

This may mean that there are still adults and children living with undiagnosed leprosy who have not been picked up, in addition to the new cases reported annually.

There is a lack of rigorous research on leprosy in Malaysia to date, with no research being done on the experiences of those living with leprosy.

Even though the numbers are low, leprosy is a complex condition with complex problems.

Those affected have to live with their residual disabilities and complications, which are permanent and irreversible.

Therefore, we should enable these patients to play an active part in managing the disease – to understand their experiences and co-create solutions to meet their needs and manage their problems.

Experts and decision-makers need the evidence-based insights from a transdisciplinary approach to overcome the health disparities and barriers preventing adequate support for people with leprosy.

Stigma, a barrier

Leprosy is known to disproportionately affect the poor, especially those living in resource-limited countries.

This leprosy patient has deformities on her toes due to a delay in seeking treatment, as well as ulcers on her leg from the disease, which affects the nerves.

Over half of new cases are diagnosed in India, which has a third of the world’s poor.

Many have limited access to healthcare due to the distance or the high costs of travelling to clinics.

As a result, they do not receive any treatment, it gets delayed, or they don’t complete it, despite the free treatment programme by the WHO.

There are also those who are lost to follow-up because they have moved away or are no longer under active review by health workers.

Leprosy-affected people, especially women, are often stigmatised and discriminated against by their families, friends and community due to their disabilities.

Women were coerced to get sterilised or undergo abortions, and many were forced to give up their babies for adoption.

The shame they feel may hinder them from seeking the appropriate help as they would try to conceal their symptoms, hence delaying treatment.

Many are unable to work to support themselves and their families.

Stigma remains a barrier to ending leprosy transmission, and contributes to the vicious cycle of disease and poverty.

Leprosy affects the biopsychosocial and economic wellbeing of affected people.

Remember the motorcycle: we need to get both wheels to turn together!

There is an urgent need for government bodies, non-governmental agencies (NGOs), community leaders/members and people with leprosy, to unite to mutually design appropriate intervention programmes to reduce stigma, eliminate discrimination, educate, rehabilitate, teach self-care and improve social participation among those affected.

A no-isolation policy

Across the world, there are still laws that discriminate against people who have leprosy.

In 1926, the British government in Malaya passed the Leper Enactment Act, which required the compulsory notification (to the authorities) of all leprosy patients, and their mandatory isolation and hospitalisation.

These laws were to protect the general public as leprosy was thought to be highly contagious.

But it also instilled fear in the public, leading to stigma and discrimination against those with the disease.

The government repealed the Act with the introduction of the National Leprosy Control Programme in 1969.

The programme is the government’s effort to control leprosy through early case detection and effective treatment.

People with leprosy have access to any public hospital or clinic in the country for medical consultation and treatment.

However, some other countries still have outdated laws that they continue to enforce until today, preventing people with leprosy from gaining employment, standing for office or participating in community activities, and leaving women and children destitute from divorce.

Malaysia has had a no-isolation policy since 1969 and tries to promote the social participation of those with leprosy.

The health authorities try to create awareness by involving NGOs and corporate bodies.

They provide training to healthcare professionals, community leaders and patients to promote self-help groups.

Their efforts have improved the community’s awareness and know-ledge of leprosy, reducing the stigma and discrimination affected people face.

High-risk individuals are encouraged to seek help and treatment.

Curable and less contagious

Malaysia is moving in the right direction, but there is still more to do.

The government’s efforts align with the WHO’s Towards Zero Leprosy: Global Leprosy (Hansen’s Disease) Strategy 2021–2030, which is aimed at zero transmission, preventing new disability and combating stigma.

As Sasakawa said, we must ensure the two wheels of the motorcycle turn together simultaneously to eliminate stigma and discrimination against those with leprosy.

Let’s look at the brighter side:

• Leprosy is curable with antibiotics, which are safe, effective, and provided for free by the WHO.
  
  The earlier patients get themselves treated, the better the outcome.
  
  Therefore, people with leprosy must be informed of their disease, and remain vigilant for new signs and symptoms.
• Leprosy is not highly contagious – 95% of adults can fight off the bacteria by themselves.
  
  A person cannot get leprosy through casual contact with an infected person as the mode of transmission is via droplets from the nose and mouth.
• People with leprosy who receive treatment can live and work normally.
  
  In fact, they are no longer contagious a few days after starting their antibiotics.
  
  However, they must complete their treatment between one to two years to prevent a relapse.
• A leprosy patient’s fingers and toes do not actually fall off.
  
  What happens is that the bacteria can cause nerve injuries, resulting in loss of sensation in the digits.
  
  Hence, burns and cuts are commonly missed, leading to infection and potentially causing the body to reabsorb the digits.

Therefore, education is the key to improving people’s access to healthcare and tackling the stigma and discrimination faced by those with leprosy.

We need to build an inclusive society.

Some people with leprosy have overcome the stigma and live normal lives despite all the setbacks.

They are able to have a family, a career and contribute to society.

Let us increase awareness of leprosy and focus on what these people can do, not their disabilities!

And let us also strive towards a world without leprosy.

To do our part, Perdana University is planning a symposium on “Living with Leprosy in Malaysia” this year (2022) to help understand the impact of leprosy in our country.

Dr Norana Abdul Rahman is an adjunct research fellow at Perdana University. This article is courtesy of Perdana University. For more information, email [e-mail]. The information provided is for educational and communication purposes only, and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader’s own medical care. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.