Act Now. End Leprosy.

Could our generation finally end the transmission of one of the oldest diseases afflicting humanity?

Introduction

World Leprosy Day is celebrated on the last Sunday of January. This international day is “an opportunity to celebrate people who have experienced leprosy, raise awareness of the disease, and call for an end to leprosy-related stigma and discrimination”.

Leprosy remains a neglected tropical disease. It still occurs in over 120 countries, with more than 200,000 new cases reported every year. It’s no wonder that the theme of World Leprosy Day 2023 is “Act Now. End Leprosy.” 

According to the WHO, this year's theme calls attention to three key messages:

1. Elimination is possible: We have the power and tools to stop transmission and defeat this disease.

2. Act now: We need the resources and commitment to end leprosy. Prioritise leprosy elimination.

3. Reach the unreached: Leprosy is preventable and treatable. Suffering from leprosy is needless.

What is Leprosy?

Leprosy is at least 4,000 years old and is one of the oldest diseases known to humanity.

Also known as Hansen’s disease, it is a chronic infectious disease caused by the slow growing bacterium Mycobacterium leprae. The disease affects the skin, the peripheral nerves, the mucosal surfaces of the upper respiratory tract and the eyes.

Leprosy is transmitted through droplets from the nose and mouth. Prolonged close contact over months with someone with untreated leprosy is needed to catch the disease. Despite myths to the contrary, the disease is not spread through casual contact with a person who has leprosy, such as shaking hands or hugging, sharing meals or sitting next to them. What’s more, the patient stops transmitting the disease when they begin treatment.

Once someone is infected with leprosy, it can take anywhere from one to over twenty years for symptoms to appear. The disease most commonly causes skin lesions and numbness of affected parts of the skin. If left untreated, advanced leprosy can lead to paralysis and the crippling of hands and feet, shortening of toes and fingers, chronic non-healing ulcers on the bottoms of the feet, blindness, loss of eyebrows and nose disfigurement.

Leprosy occurs at all ages, from early childhood to old age. But the good news is that leprosy is treatable.

Treatment

Leprosy is curable via a combination of specific antibiotics, frequently referred to by the collection name ‘multidrug therapy’ (MDT).

Early treatment stops the spread of the disease, as patients are no longer infectious after 72 hours, and, if administered in the early stages, can prevent severe symptoms.

What’s more, treatment is available free across the world.

World Leprosy Day

The World Health Organisation believe this generation can be the one that finally ends the transmission of leprosy. Their target is to achieve 120 countries with zero new leprosy cases by 2030.

The aim of World Leprosy Day is combat the stigma attached to the disease, by making the general community aware of how it is caught and spread, and that we can easily cure it. 

• Leprosy is a chronic infectious disease caused by a type of bacteria, Mycobacterium leprae.

• The disease predominantly affects the skin and peripheral nerves. Left untreated, the disease may cause progressive and permanent disabilities.

• The bacteria are transmitted via droplets from the nose and mouth during close and frequent contact with untreated cases.

• Leprosy is curable with multidrug therapy.

• Leprosy is reported from all the six WHO regions. Most annual new case detections are from South-East Asia.

India

India observes World Leprosy Day on 30th January every year, coinciding with the anniversary of the death of Mahatma Gandhi.

In 2005, India declared it had eliminated leprosy as a public health problem. But in the recent years, cases have emerged in several states and with higher intensity. What is more worrying is that today, India accounts for over half the world’s new leprosy patients.

Dr Rajeev Joy Nathan is the Medical Superintendent of The Leprosy Mission Trust India—the largest leprosy-focused NGO in India. He says early detection and treatment in India is the key to prevent disability and disease transmission.

“Persons affected by leprosy are economically and socially marginalised because of the associated stigma and discrimination. As a result, people often hesitate to seek treatment despite having symptoms, and unwittingly transmit the disease to others”, he says.

Another reason people delay seeking treatment is because the initial symptoms are often painless. But delaying treatment can lead to disability, which reinforces stigma. 

“As citizens, it should be our duty to get information about leprosy, its cause, treatment and places where treatment is available. We should share this information as much as possible in whatever forum we can to remove the misconceptions and myths associated with leprosy,” says Dr Nathan.

Shiv Sadan

Raphael, in Northern India, is a centre for the relief of suffering established by Leonard Cheshire and Sue Ryder. It has cared for people with leprosy and provided them a home since 1959, by rescuing them from the streets of Dehradun.

 Raphael CEO Pryio Lall says that their facility - called Shiv Sadan - has provided a home for 200 people cured of leprosy over the years.

 “We offer them a home for life. All services are provided free and are dependent on donations,” she says.

 Shiv Sadan remains a home for about 40 cured leprosy residents and family members. Many of them have found employment at Raphael. The centre supports their children with education and finding work outside Raphael. 

Ms Lall is hopeful leprosy will soon be eliminated.

“We believe we can end the transmission of leprosy by 2035 through finding and treating all cases of leprosy,” she says.

Ryder-Cheshire New Zealand raises funds for Raphael in India. If you would like to support Raphael’s services for people with leprosy, click here.

The fight against tuberculosis (TB)

In late March 2022, countries globally commemorated World Tuberculosis (TB) Day. The theme this year was Invest to End TB, Save Lives.

However, the day passed with scant media coverage or public acknowledgement. This poor response is discouraging for those on the front line who are currently losing ground to this deadly disease.

Last year, TB killed 1.5 million people and infected another 10 million. For the first time in a decade, the number of deaths in a year has increased. TB is now second only to COVID-19 as the world’s most deadly infectious disease.

TB begins with a mild fever and malaise, followed by a painful cough and shortness of breath. It usually affects the lungs, but it can also impact other parts of the body, such as the brain, kidneys, or spine.

The infection prospers in crowded conditions. Containing an outbreak requires contact tracing, isolation of the infected, and it can take weeks, or even months, of medical treatment to cure.

TB is present in all countries and age groups. In most cases, it’s treatable and curable. However, people with TB can die if they do not get proper medical attention.

Timor-Leste has the highest mortality rate in the world, at 106 deaths per 100,000 people. However, the Ryder-Cheshire Foundation is working alongside the Timor-Leste Government to offer testing, treatment, and prevention of this terrible disease. Together, they are determined to turn this situation around.

Ataúro Island

Timor-Leste’s Ataúro Island has been described as the untouched jewel of Southeast Asia. Just a short boat ride from the capital of Dili, Ataúro offers everything you could imagine or want in a relaxing tropical getaway: lush mountains, white sand beaches and the locals still living a traditional lifestyle.

It is also at the centre of a partnership between Klibur Domin, Ryder-Cheshire’s centre near Dili, and the Timor-Leste Ministry of Health. Together, they hope to eradicate TB from the island within two years.

Joaquim Soares is the managing director of Klibur Domin. He believes the campaign is progressing well.

“So far this year we have screened 2,200 people for TB symptoms, referred most of them for a chest X-ray, identified 440 people with lung abnormalities and confirmed 106 cases of TB,” he says.

The confirmed cases have started TB treatment. However, he is seeing increasing numbers of patients infected with TB bacteria that are resistant to the most common medications used to fight the disease.

Klibur Domin

Klibur Domin, Ryder Cheshire’s centre near Dili, has a residential centre that specialises in treating multidrug-resistant TB patients.

The World Health Organization (WHO) defines multidrug-resistant TB (MDR-TB) as TB bacteria that are resistant to two of the most important TB drugs, resulting in fewer treatment options and increased mortality. Less than 60% of MDR-TB patients who seek medical care recover, mostly because of MDR-TB’s high mortality rate, or because the patients do not complete their treatment.

Joaquim says that they closely monitor the patients treated at Klibur Domin and they only discharged once the disease is no longer a threat to them or others.

Klibur Domin also has a mobile TB unit that services villages throughout the country.

The future

Coronavirus has diverted scientific attention from TB, HIV, and malaria. The lockdowns, particularly across parts of Africa, Asia and Latin America, have created barriers to patients who must travel to get diagnosed and treated.

Health officials acknowledge that although they are currently losing ground, they are determined to contain and ultimately eradicate TB.

Ryder-Cheshire New Zealand raises funds to support Ryder-Cheshire centres in both India and Timor-Leste. Both centres have programmes to prevent, test, and treat TB. If you can assist, click here.