Monthly Archives: March 2018

Talking Leprosy: Interview with Courtenay Dusenbury

“ILEP will play a crucial role in the success of the global partnership”

This month, ILEP’s Rosa Argent caught up with Courtenay Dusenbury, the Secretariat Director of the Global Partnership for Zero Leprosy, in Colchester to find out what attracted her to the role and how important she believes the role of ILEP members will be in achieving zero leprosy.

Courtenay Dusenbury has a talent for bringing people together from disparate groups towards a common goal. Prior to joining the Global Partnership for Zero Leprosy in January, she was the founding director of the International Association of National Public Health Institutes U.S. office, working with ministries of health and public health leaders in countries to transform national public health capacity globally.

She was inspired to join the leprosy community at this critical juncture – just weeks before the global partnership was publicly announced – because “I was very interested in the idea of helping to create a new partnership of people – with a shared and bold vision and aspirational goals – to tackle a 2000+ year old problem.”

Describing one of her traits as perseverance, Ms Dusenbury – who is perhaps fittingly a marathon runner – highlights the importance of relationship building and long-term commitment required for the partnership to achieve success. She says: “It’s a tremendous honor and learning opportunity to be able to work with the top scientific experts and policymakers on our leadership team as well as the leaders and teams of the ILEP membership. The amount of goodwill and willingness to work together for the benefit of humankind they share is very exciting.

“Such opportunities are rare and I have the sense that everyone understands the importance and gravity of the chance we have been given to work together in 2018 – what it means for 2028, and 2038 … and beyond.   We feel very strongly that we want to get this right, that we recognize there are political, scientific, and programmatic complexities, and that it will be necessary to persevere and to be committed for the long term.”

Despite many complexities, however, she believes that the success of other private-public partnerships in the neglected tropical disease sector demonstrate the huge potential for achieving zero leprosy. “With a common vision and a framework, and objectives for achieving that vision, we can do what other groups in the NTD community have done:  share and apply best practices, technical expertise and lessons learned across countries and communities.  The Global Partnership’s Program Implementation working group (coordinated by ILEP) in particular will help to develop and apply the strategies for programmatic excellence needed to get to zero.”

The importance of partners sharing a common vision, and setting and agreeing clear objectives and milestones, is critical.  Ms Dusenbury believes that “It’s a key role of the partnership to ensure that all those impacted and interested are at the table from the start, that their input is sought and acted upon, that consensus is used to come to decisions on how we proceed.  In other words, true partnership.”

The role of ILEP’s secretariat and its members, she argues, play a unique and important leadership role in the partnership. “Their experience in research and program implementation, the close relationships they have with partners working in country, their funding of best practices and their dedication to improving the lives of our fellow human beings make them absolutely essential to this work.  Their technical and policy expertise is priceless; no global effort can function without it.  Having guidance and advice from ILEP, and full participation in work groups and policy development, will be crucial to the success of the global partnership.”

Global assembly reinvigorates efforts to beat leprosy

Thursday 22nd March, Colchester – A global assembly, hosted by UK-based specialist leprosy charity, Lepra, brought together delegates from across the world to reinvigorate efforts to beat leprosy[1].

The assembly was held at Lepra’s Head Office in Colchester, Essex on Monday 19th – Friday 23rd March. The meetings were chaired by the International Federation of Anti-Leprosy Associations (ILEP)[2] and the Disease Management, Disability and Inclusion (DMDI) working group of the Neglected Tropical Disease NGO Network (NNN)[3]. The leadership team for the Global Partnership for Zero Leprosy[4] also hosted their Inaugural Meeting.

The meetings attracted delegates from America, Geneva, India, Nepal, The Netherlands and Paraguay and were attended by representatives including the World Health Organisation (WHO), United Nations (UN) and Novartis Foundation.

The ILEP Technical Commission meeting discussed how to advance the research which is needed to accelerate efforts to achieve zero leprosy, and practical issues relating to how ILEP can strengthen its monitoring and evaluation. The Panel of Men and Women affected by leprosy discussed the ways to increase meaningful participation for those affected by this disease, including playing a leading role in updating health-related stigma guidelines.

Geoff Prescott, Chief Executive at Lepra said:

“Leprosy is a tragedy, but it needn’t be the case as it’s completely curable[5]. However, a lot still needs to be done to beat this disease. There are more and more cases, but less funds to treat it. That’s why these meetings are important as they enable different organisations from across the world to get together in one central place to discuss future projects and partnerships to accelerate efforts to end leprosy.”

Diana Lockwood, Infectious Disease Physician and Leprologist at London School of Hygiene and Tropical Medicine said:

“One of the biggest challenges with leprosy is that it can often be difficult to detect and treat nerve damage – the hallmark of this disease. By pulling experts together within the leprosy field, today we were able to discuss various research programmes and projects that can be explored to treat this, in addition to other leprosy complications.”

Mathias Duck, Chair of ILEP’s Panel of Women and Men affected by leprosy said:

“I was diagnosed with leprosy in 2010, which affected the nerves, sensitivity and strength in my right hand. I was working at a leprosy reference hospital at the time and I was treated right away and recovered completely. Continuous and increased efforts in leprosy are needed to treat people on time, stop transmission, prevent disabilities and reduce stigma. That’s why the panel is important as it brings people affected by leprosy together to give them a voice which helps to shape policies and projects.”

Ends

[1] According to the World Health Organisation, more than 200,000 new cases of leprosy are detected and diagnosed each year. Survey and research data also shows that more than 7 million people are currently affected by leprosy worldwide. Of these, 4 million have developed life-changing disabilities as a result of delayed treatment while over 3 million cases remain undiagnosed. Reported cases in India are at a 10 year high.

[2] ILEP is a Federation of 13 international non-governmental organisations united to create a world free of leprosy.

[3] The NNN was established in October 2009 to create a global forum for non-governmental organisations working to control onchocerciasis, lymphatic filariasis, schistosomiasis, soil transmitted helminths, and trachoma. Other diseases including leprosy have since joined the forum.

[4] Leprosy groups have joined forces to launch a Global Partnership for Zero Leprosyto accelerate progress towards a world without leprosy.

[5] The cure for leprosy is Multi Drug Therapy which is administered free of cost to leprosy patients in all endemic countries.

 

Lepra finds 30% more women living with undiagnosed leprosy

Ahead of International Women’s Day, 8th March, UK-based leprosy charity, Lepra has published new research which found 30% more women living with leprosy in Bihar, India, than the Indian government.

Evidence suggests that gender inequality in leprosy endemic countries is one of the main barriers preventing women accessing treatment. This leaves them at greater risk of developing life-changing disabilities.

Rukmini Rao, Chair of Lepra in India comments:

“In India, there are many cultural barriers which prevent women from accessing healthcare. They often have to wait for permission from their husband or guardian to access medical help and they are unable to be examined by a male doctor alone. Many also fear the consequences of a leprosy diagnosis, which can lead to abandonment, unemployment, loss of their home, or even access to their children.”

There is no evidence to suggest men are more susceptible, however, national data reported in 2017 shows that over 58%[1] of cases that were diagnosed in Bihar were men. The organisation believes more men are found as they do not face gender inequality that prevents them from seeking treatment.

The research, published in December 2017[2], shares the results of enhanced screening surveys conducted across Bihar. The number of cases found in Lepra’s survey suggests as many as 30% of women may be missed in the official government programmes.

The enhanced screening surveys were conducted by predominantly female Community Champions in areas with a high prevalence of leprosy, including tribal and marginalised areas. The charity found that female health workers were able to visit and examine women in their homes, overcoming some barriers preventing access.

Rokdiya, aged 14 from Bihar was found in the enhanced screening survey. She says:

“I developed patches a few years ago, but, I was too scared to seek treatment as I was worried about stigma. I was so afraid because my father lost his right eye to leprosy. I was found through the screening survey, where a Lepra health worker visited my home to check me for symptoms. I am now receiving the cure but I won’t tell anybody that I have been affected by leprosy as I am worried that I will be treated differently.”

Lepra wants to up-scale its enhanced screening surveys to diagnose and treat more women living with leprosy. The organisation is asking the public to hold life-changing tea parties to raise funds to help train more female Community Champions so that more women can be screened for the disease and provided them with the treatment they urgently need.

To find out more visit https://www.lepra.org.uk/life-changing-tea

[1] Data sourced from 2016 – 2017 annual report from the National Leprosy Eradication Programme (NLEP) http://nlep.nic.in/data.html

[2] Research published in Leprosy Review: Enhanced active case-finding, identifying leprosy cases missed by recent detection campaigns in Munger District, Bihar, India https://www.lepra.org.uk/platforms/lepra/files/lr/Dec17/Lep452-462.pdf