World Leprosy Day

World Leprosy Day (WLD) is celebrated on the last Sunday of January–in 2022, WLD was on January 30th. 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. The “United for Dignity” campaign calls for unity in honoring the dignity of people who have experienced leprosy. The movement tributes the lived experiences of individuals who have experienced leprosy by sharing their empowering stories and advocating for mental wellbeing and the right to a dignified life free from disease-related stigma.

“So let us not limit ourselves to a one-day commemoration, but rather make every day an NTD (Neglected Tropical Diseases) day by working together and encouraging the global health community to fight these diseases of poverty” – Dr. Ren Minghui, WHO’s Assistant Director-General, Leader of the Division of Universal Health Coverage/Communicable and Non-Communicable Diseases)

All about leprosy!

What is it?

  • Leprosy is a disease caused by a bacteria called Mycobacterium leprae, which attacks the nerves on one’s hands, face, and feet, causing numbness and loss of sensation in those parts of the body.

How does it spread?

  • It spreads through droplets from the nose or mouth of a patient to the skin and respiratory tract of another person. Transmission needs close and frequent continued contact with an untreated, infected person. As the bacteria multiplies very slowly and is not highly infectious, thus indirect transmission is very unlikely. About 95% of people have natural immunity against the condition.

What are the symptoms?

  • Dark-skinned people might have light patches on the skin, while pale-skinned people have darker or reddish areas; loss or reduction of sensation in the skin patch; numbness or tingling of the hand or feet; weakness of the hands, feet, or eyelids; painful or tender nerves; swelling or lumps in the face or earlobes; painless wounds or burns on the hands or feet.

What is the treatment for leprosy? 

  • Multidrug therapy (MDT) is the best treatment for leprosy, as it combines different drugs depending on the type of the disease.

Is there a cure?

  • Yes! Extremely effective and safe drugs for the treatment of leprosy are now available for free at most health centers, including those in remote areas. Once one finishes the whole treatment, they no longer had nor spread the disease.

Is leprosy still a problem worldwide?

  • Nearly all countries have stated that leprosy has been eradicated as a public health problem at the national level (less than one case per 10,000 people). Yet, the illness continues to be a public health issue at subnational levels in many states, provinces, and districts within countries.

Why is it still a problem?

  • The misconceptions about the disease lead to stigma and discrimination
  • Leprosy generally affects underprivileged people, who face numerous difficulties to access health care
  • The leprosy programme is less known than other health programmes, thus it receives less attention and resources at global and national levels

“What makes leprosy such a challenge is the discrimination that accompanies it—discrimination that has been recognized as a human rights issue by the United Nations. (…) For many persons affected by leprosy, the discrimination doesn’t end once they are cured, and that tells me that society has a disease. I am convinced that if we can solve the issue of discrimination in leprosy, this can become a model for solving all the human rights problems in the world.” “We are the only creatures on Earth that have been given the ability to reason. Let us use our reason to confront the stigma that persons affected by leprosy face, cure society of the disease of discrimination and stop repeating the mistakes of the past.” – Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination

What should the community know about leprosy?

  • Leprosy is caused by a germ. It is neither genetic nor a curse
  • Leprosy can be easily identified from clinical features alone by a trained health worker
  • A combination of drugs, called multidrug therapy (MDT) eliminates germs and stops the spread of leprosy after the first dose. Patients on MDT do not spread leprosy
  • Early and regular treatment prevents deformities
  • Patients who complete treatment are totally cured, even if they have residual skin patches or disabilities
  • Patients can lead completely normal lives during and after their treatment. 

What parts of the world are most affected?

  • Brazil and India had over 10 000 new cases in 2020
  • Other affected regions: North and Latin America, Africa, and South Asia. 

Hear from Pitt Alumni Mounika Abbareddy! 

Mounika graduated from the University of Pittsburgh with a Master in Public Health in 2019 and has been working for the Allegheny County Health Department as a COVID-19 Disease Investigator during the pandemic. In 2018, they went to India to work with the LEPRA Society and were able to see first-hand their groundbreaking research and assist patients in their clinics. 

“What I have found about leprosy is that most people are not aware that it is still a problem in many areas of the world. Leprosy is a disease that has been around for a long time and we have known about it for a long time as well. Unfortunately, what most people know about leprosy is that there were leper colonies and leprosy in Europe around the Middle Ages, but do not realize that it is still very much prevalent today. Increasing awareness of the disease in the community can help diagnose it faster, allowing treatment to start earlier, and thus preventing it from spreading it in their own bodies and to other people.” – Mounika Abbareddy, Master in Public Health, University of Pittsburgh, Class of 2019

“I believe some amount of stigma exists for most diseases. I remember reading about the leprosy in Europe in the Middle Ages, and how people were isolated into leper colonies in hospitals, churches, and even islands. In the US, leper colonies have existed as recently as the 1800s. Stigma can be a real problem when it comes to diagnosing and treating diseases. This is especially the case of leprosy, which can be visible on the skin. Stigma can cause people to cover up their symptoms, not to be isolated, and not seek help. They would not be diagnosed early on and will not start treatment until the symptoms get really serious. This can make it so that the disease can leave a mark on the body even after treatment.” – Mounika Abbareddy, Master in Public Health, University of Pittsburgh, Class of 2019


Impact of COVID on leprosy control

During the COVID-19 pandemic, the rates of Leprosy cases fell by 37.1% in 2020 (127 396 new cases were reported, a case detection rate of 16.4 million per population). Although it would be nice to think that the contagion diminished, the figures lowered most probably due to less discovery and reporting during the pandemic. Only 127 countries (of 221) provided data in 2020, as compared to 160 in 2019.

COVID-19 had a major impact on health services in all countries. A survey by WHO exposed a large interruption to routine services in many countries, control programmes were affect by relocation of staff, termination of community-based activities, active case-finding, delays in receiving MDT supplies, and partial monitoring of nerve function damage and treatment of reaction.

Although the pandemic disrupted health services, it offered an opening for fortifying digital health initiatives for diagnosis, referral, monitoring, and training staff in various countries. WHO developed e-learning units for increasing information and skills of staff at all levels from suspected referrals and diagnosis to Leprosy treatment.  While the pandemic affected advancement, many countries made commendable developments in achieving the Strategy 2016–2020. Optimization of existing tools, such as for contact-tracing, active case-finding and post-exposure prophylaxis with single-dose rifampicin, and introduction of new diagnostic tests and preventive regimens are critical to address the plateauing of the decrease in new cases. The improvements must be sustained to guarantee elimination by 2030. 

“The social and economic upheaval caused by the coronavirus pandemic has been particularly hard on persons affected by leprosy and their families, many of whom were in a vulnerable position to begin with. Lockdowns implemented by governments have made it harder for them to access treatment and care, deprived them of income-generating opportunities, and exacerbated the deprivations their marginalized communities already faced.” –  Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination.

“What makes leprosy such a challenge is the discrimination that accompanies it—discrimination that has been recognized as a human rights issue by the United Nations. (…) For many persons affected by leprosy, the discrimination doesn’t end once they are cured, and that tells me that society has a disease. I am convinced that if we can solve the issue of discrimination in leprosy, this can become a model for solving all the human rights problems in the world.” “We are the only creatures on Earth that have been given the ability to reason. Let us use our reason to confront the stigma that persons affected by leprosy face, cure society of the disease of discrimination and stop repeating the mistakes of the past.” – Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination


Want more information on leprosy? Check out these websites! 

https://www.who.int/health-topics/leprosy#tab=tab_1

https://www.cdc.gov/leprosy/index.html

https://leprasociety.in/

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