New Global Partnership for Zero Leprosy launches to accelerate progress toward a world without leprosy

• Innovation in science offers new opportunities and hope for achieving zero leprosy.
• The Partnership will coordinate research in new diagnostics, strategies to interrupt transmission, translation of new evidence into action, and will help strengthen national programs.
• World Leprosy Day (Jan 28) raises awareness of a disease with more than 200,000 new diagnoses per year, primarily in India, Brazil and Indonesia.

Ahead of World Leprosy Day on Sunday 28 January 2018, several leading leprosy groups have joined forces to launch a Global Partnership for Zero Leprosy to accelerate progress towards a world without leprosy, also known as Hansen’s disease.

The Global Partnership for Zero Leprosy brings together organizations including the Novartis Foundation, the International Federation of Anti-Leprosy Associations (ILEP), the International Association for Integration, Dignity and Economic Advancement (IDEA), as well as national leprosy programs, with support from the World Health Organization (WHO). The secretariat for the partnership will be hosted by the Task Force for Global Health in Decatur, GA, USA.

“Our common vision is zero leprosy. The formation of the Global Partnership for Zero Leprosy is a major step forward in fighting the disease and giving hope to patients,” said Dr. Ann Aerts, Head of the Novartis Foundation. “By combining expertise and coordinating research and funding efforts, we will be able to take advantage of new and innovative approaches to accelerate progress towards the elimination of leprosy.”

Despite the availability of effective multi-drug therapy for the last 30 years, the number of newly diagnosed leprosy patients has remained above 200,000 per year for the last decade, including thousands of children. i,ii

This is due to barriers such as inadequate resources and stigma, which make diagnosing and treating leprosy difficult and allow the disease to continue to spread. However, scientific innovation is changing the way we approach leprosy.i,iii Instead of simply focusing on treatment, we can now implement innovative ways to interrupt transmission of the disease. iv

“Recent innovations mean we are now able to build the final roadmap to eliminate leprosy once and for all,” said Jan van Berkel, ILEP President. “Disease elimination is too big a challenge for one organization or sector alone, and the NGO community looks forward to contributing to the combined expertise of the partnership. Together, I am optimistic that we can achieve zero leprosy.”

Today, around 2 million people are thought to be living with significant disabilities as a result of leprosy and many millions more are affected by leprosy-associated stigma or have undiagnosed and untreated leprosy.iii If left untreated, the infection can spread to others and cause progressive and permanent damage to the skin, nerves, limbs and eyes.

“The fear of stigma and discrimination will often stop persons who might have early signs of leprosy from seeking treatment,” said José Ramirez, Jr., board member, International Association for Integration, Dignity and Economic Advancement (IDEA). “Leprosy is a form of bullying because of the labelling, rejection and fear towards persons affected.”

The Global Partnership for Zero Leprosy will coordinate action in three key areas: (1) accelerating research in new diagnostic and therapeutic tools, interventions, and strategies to interrupt leprosy transmission; (2) mobilizing technical assistance and expertise to strengthen existing national programs and accelerate translation of new evidence into action; and (3) increasing advocacy and fundraising.

“The Global Partnership for Zero Leprosy adds momentum to global efforts to end discrimination of persons affected by leprosy and to reach zero transmission and the eventual elimination of this age-old disease,” said Dr. Erwin Cooreman, Team Leader of WHO’s Global Leprosy Programme.

For more information on the Global Partnership for Zero Leprosy visit www.zeroleprosy.org.

REFERENCES

i World Health Organization, Weekly Epidemiological Record, 1 September 2017. Vol. 92, 35 (pp. 501-520). Available at: http://apps.who.int/iris/bitstream/10665/258841/1/WER9235.pdf
ii Smith, C. S., Noordeen, S. K., Richardus, J. H., Sansarricq, H., Cole, S. T., Soares, R. C., … & Baruaf, S. (2014). A strategy to halt leprosy transmission. The Lancet Infectious Diseases, 14(2), 96-98. Available at:
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(13)70365-7/abstract
iii World Health Organization. (2016). Strategy 2016-2020: Accelerating Towards a Leprosy-free World. WHO SEARO/Department of Control of Neglected Tropical Diseases, New Delhi. Available at:
http://apps.who.int/iris/bitstream/10665/250119/5/9789290225256-Eng.pdf
iv Peter Steinmann, Steven G Reed, Fareed Mirza, T Déirdre Hollingsworth, Jan Hendrik Richardus. Innovative tools and approaches to end the transmission of Mycobacterium leprae. Lancet Infect Dis 2017; 17: 298–305
v Richardus, J. H., Nicholls, P. G., Croft, R. P., Withington, S. G., & Smith, W. C. S. (2004). Incidence of acute nerve function impairment and reactions in leprosy: a prospective cohort analysis after 5 years of follow-up. International journal of epidemiology, 33(2), 337-343. Available at: https://www.ncbi.nlm.nih.gov/pubmed/15082636
vi World Health Organization, Leprosy factsheet. Available at: http://www.who.int/mediacentre/factsheets/fs101/en/

Preventing leprosy in children: global push needed to end modern-day disease

Blog by Dr. Paul Saunderson, ILEP ITC Chair and Medical Director of American Leprosy Missions, and Rosa Argent, ILEP Comms Manager

Leprosy is commonly known as the oldest human disease, given its biblical references and recognition in the ancient civilizations of China, Egypt and India, yet receiving a life-altering diagnosis of leprosy is a reality that affects tens of thousands of children each year.

On average, another child is diagnosed with leprosy every half hour. Contrary to popular beliefs, this is very much a modern-day disease.

For Sakshi, the first sign that she had leprosy came when she was just ten years old. She noticed her little finger on her right hand had become swollen and painful. After a few weeks her whole hand became numb and she started having trouble gripping her pencil. Her classmates began to notice and started bullying her, calling her ‘lulli’, a derogatory term for someone who is disabled. Eventually she stopped going to her local school as she could not keep up with her work.

Sakshi is from a rural village in Bihar, India – the country with more than 60% of global leprosy cases – yet her story is all too common across the world in often poor and marginalised communities where pockets of the disease remain endemic.

In 2017, the WHO reported a total number of 18,230 new child cases of leprosy. This is roughly 9% of the total number of global cases reported annually. The significant number of children contracting leprosy year on year concerns global health experts as it shows that transmission of the disease persists throughout communities.

Worryingly, reports in some countries have found that about 11% of children already have visible impairments at the time of diagnosis, indicating late detection.

For a disease that is curable – through multi-drug therapy treatment, which is provided free of charge globally by the Novartis Foundation – too many children are still ending up with preventable disabilities.

Leprosy is caused by a bacillus, Mycobacterium leprae, which multiplies very slowly and has a long incubation period of around 5 years.  The bacteria attack nerve endings and destroy the body’s ability to feel pain and injury, often leading to wounds and infections. Similar to the common cold, it is believed that leprosy is spread by air through droplets from the nose and mouth. But unlike the common cold, it is only mildly infectious.

This means that children are most likely to contract leprosy at home, from close and prolonged contact with an infectious person. Research tells us that if you live in a household with a person who has untreated leprosy, you have an 8-fold risk of getting leprosy yourself, compared with the general population.

One technique being used to stop this spread is the examination of all household contacts whenever a new case of leprosy is diagnosed. Anyone newly diagnosed will be started on multi-drug therapy treatment immediately. In some areas, a single dose of antibiotic is also given to all household contacts without symptoms of the disease.

This simple action prevents leprosy in more than half of those who are already incubating the disease. Known as post-exposure prophylaxis, this is a promising treatment strategy that could help drive down the number of children contracting leprosy.

While globally great strides have been made to reduce the incidence of leprosy, the most recent WHO figures reveal that over 100 countries reported cases of leprosy, while more than half of these reported leprosy in boys and girls under 15 years old.  The widespread nature of this disease indicates that a coordinated international response is required.

On World Leprosy Day, Sunday 28 January, ILEP and partners are highlighting the need for a concerted global effort to prevent leprosy-related disabilities in girls and boys.

Children as young as nine are presenting with multiple disabilities, arising from clawed hands and foot drop, and are needing reconstructive surgery and physiotherapy to recover.

Gruelling medical interventions aside, children with leprosy often face crippling social barriers, including the loss of education, bullying and even rejection by family members because of the stigma associated with this disease.

Sakshi had to temporarily endure the pain of exclusion by her classmates and the inability to continue her education for a year. Yet she was fortunate to receive a diagnosis at the Lepra run Munger referral centre and thanks to a 12-month course of multi-drug therapy, she has no lasting disabilities relating to her diagnosis. She has returned to school and is working to fulfil her wish of becoming a teacher.

If we are to bring child leprosy rates down, the global health community must work with national governments to strengthen health care systems, improve early case detection and expand preventative treatments. We must ensure adults diagnosed with leprosy complete their treatments properly to stop the disease spreading in households. We must also get serious about ending discriminatory laws and practices, and increasing participation of people affected by leprosy, something ILEP members are committed to.

By working in collaboration to tackle leprosy on three fronts – zero transmission, zero disabilities and zero discrimination- we can stop leprosy from stealing childhoods, and take an important step closer to consigning this disease to history.

World Leprosy Day 2018 is focused on preventing girls and boys from developing disabilities associated with leprosy.

Sakshi’s story: Preventing life-long disabilities in children with leprosy

When Sakshi was just ten, she noticed her little finger on her right hand had become swollen and painful. After a few weeks her whole hand became numb, and she found she was having trouble gripping her pencil. Her classmates began to notice and started bullying her, calling her “lulli”, a derogatory term for someone who is disabled. Eventually she had to stop going to school because she could not keep up with her school work.

Sakshi’s parents took her to the health centre in her village, Tetia Bamber, however she was misdiagnosed and prescribed drugs which cost 400Rs (£4) a week, yet did not treat her condition.

After completing a year of treatment at a cost of over 20,800Rs (£200) and seeing no improvement in her condition, her family took her to see an orthopaedic surgeon who referred her to the District Hospital where she was diagnosed with leprosy. Sakshi was then sent to Lepra’s referral centre for specialised care, where she completed a 12-month MDT and steroid course to treat the disease. She also received physiotherapy and assistive devices to improve the flexibility and strength in her hand and she has now regained the use of her hand, can now grip well and is able to write once again.

Unfortunately due to lack of training at the Tetia Bamber health centre Sakshi had to endure a year experiencing the effects of leprosy, and missing out on her education and childhood, whilst her family had to pay for an expensive and incorrect treatment. However, thanks to a quick diagnosis at the District Hospital and treatment by our staff at the Munger referral centre Sakshi was treated in time to stop any permanent disability setting in, this has allowed her to return to a normal life. She is very happy with the results of her treatment and has now gone back to her school to continue her studies and fulfil her dream to become a teacher.

“When I was diagnosed with leprosy my family were very worried and thought no one would want to marry me in the future. But now I am feeling well and confident. I have re-joined my school and hope to become a mathematics teacher when I am older.”

– With thanks to Lepra for sharing this case study.