ILEP adopts new strategy and decides to learn from and share with other diseases.
|Moving forward: ILEP’s new strategy|
“We started self-help groups so patients were motivated to keep with the treatment and to learn self-care. But we found they can do more than that. They can support each other to fight stigma,” says Sunita.
She should know. For over 20 years this nurse and mother of three has been working in community health care in Bihar, northern India.
Because self-care practices — washing the limbs and massage — are similar for lymphatic filariasis and leprosy, Sunita and her colleagues at the NGO Lepra brought together patients suffering from these diseases in self-care groups. Slowly, they have built confidence to confront the prejudice against both these neglected tropical diseases (NTDs).
The International Federation of Anti-Leprosy Associations (ILEP) learned from such front-line experiences of breaking boundaries between diseases in devising our new strategy — “Achieving a World Free from Leprosy.”
The challenge is clear: progress on leprosy is just too slow. Numbers of new cases are not diminishing significantly. Lack of early detection and treatment means that this curable disease is still blighting many lives. Among children alone, some 20,000 contract the disease every year and an unknown number have already developed a lifelong impairment that may well subject them to discrimination because of the stigma of leprosy.
Our members challenged us to make a step increase in our collaboration to find better ways to stop the transmission of leprosy, to prevent disability due to leprosy and to break the barriers that too often exclude children, women and men affected by leprosy and their families from society. We agreed early on that our mission was still to achieve a world free from leprosy, but that this could be better achieved by learning from other NTDs, while sharing leprosy’s learning with them.
NTDs are diseases of poverty. As Dr. Wim van Brakel of Netherlands Leprosy Relief says of his work in Nepal: “In poor communities you find several NTDs. Most children in Nepal I diagnosed with leprosy also had round worm or hookworm. So a de-worming treatment is standard.”
Such insights have led to innovative methods of case detection. A Brazil schools program screened children for both worms and leprosy. Fondation Raoul Follereau in West Africa supports case detection for Buruli ulcer and leprosy.
Linkages between diseases inform research. The Leprosy Research Initiative (LRI) of ILEP members is supporting a study on the impact of helmetic infestation on the immunology of leprosy. Linkages can also lead to joint action. A recent workshop in Utrecht, Netherlands, brought together organizations working on leprosy and several other NTDs to look at working together on prevention of disabilities, stigma reduction and inclusion, accessing funding and combining treatments.
Organizations working in other NTDs are keen to learn from leprosy regarding morbidity management, disability prevention and stigma reduction. Leprosy organizations have a longer history of self-management and self-care groups, which can be applied to all patients with wounds or skin problems. Plus, as Sunita explains, such groups can also develop solidarity to fight stigma.
Leprosy has been stigmatized since ancient times — and still is. Research carried out by Lepra in Bangladesh in 2014 showed that 32% of those interviewed would refuse to travel with people affected by leprosy and 29% would refuse to buy from that person.
Some 10 other NTDs also have published evidence that their diseases are stigmatized. But the leprosy field has gone further in tackling the issue with a set of human rights principles and guidelines on reducing stigma against people affected by leprosy and their families.
It also has a strong history of people affected by leprosy claiming their rights as I saw in Japan this January when I attended the tenth Global Appeal to End Stigma and Discrimination against People affected by Leprosy. I met women and men who successfully campaigned for repeal of Japan’s leprosy laws and in 2001 won compensation for being deprived of their human rights as a result of the state’s isolation policy.
An LRI and Sasakawa Memorial Health Foundation-sponsored trial of stigma reduction interventions in Indonesia that concluded in 2014 showed major improvements in the lives of children, women and men affected by leprosy. In addition, negative attitudes against leprosy in the community had reduced significantly. These experiences are worth sharing with other NTDs.
Gandhi said, “We need to be the change we wish to see.” At ILEP we have changed ourselves. To ensure that as an organization we include people affected by leprosy, we are setting up an Advisory Panel of women and men affected by leprosy, which, like our Technical Commission, reports directly to the top decision making body in ILEP, our Members Assembly.
|New CEO Tanya Wood|
We have a new strategy, a new CEO, Tanya Wood, and a new home in Geneva, where we have moved to be more nimble at creating a world free from leprosy. We want to learn from and share with those working on other diseases and to ensure that leprosy is not left behind when new health initiatives are developed. We also aim to link better with the WHO, its Global Leprosy Program and NTD department, and relevant parts of the United Nations. Recently, the Rapporteur on Health made a statement on World Leprosy Day, while UN Women tweeted in support of ILEP’s report on the triple jeopardy of women and girls affected by leprosy.
Technical collaboration and support for government leprosy programs has been ILEP’s strength and our new Global Technical Policy Director, Dr. David Lai, will be based in Delhi to ensure that learning is spread widely among practitioners.
What has not changed is ILEP’s focus on leprosy. But our impatience to be more effective is causing us to learn from and share with other diseases, just as Sunita has taught us.
Jan van Berkel is president of the International Federation of Anti-Leprosy Associations.
“The rising profile of the NTD agenda presents opportunities for collaboration on cross-cutting issues and intervention-based approaches.”
— From ILEP Strategy 2015-2018