Talking leprosy: Anna Wickenden

This month we catch up with Anna Wickenden, the Director of the AIM Initiative, and hear her views on how the leprosy community can demonstrate leadership in the broader fight against NTDs.

Born in London, U.K., Anna Wickenden’s commitment to combatting Neglected Tropical Diseases (NTDs) has seen her spend a decade living in Canada before moving to west Africa last year, where she oversees the AIM Initiative.

Coming from a disability sector background, Anna moved to Canada in 2007 to work for Effect: Hope (then The Leprosy Mission Canada), before her appointment as AIM Director two years ago, and the subsequent move to Ghana with her husband.

The AIM Initiative aims to break down the barriers to NTD care through using innovative mapping techniques and integrated health system based interventions that help guide governments and partners to design health care programmes that target the areas of greatest need and highest risk. The very fact that these diseases are neglected is personally motivating to Anna, who says the role appealed to her because it provides a real ‘opportunity to make a difference and address a gap in the link between data and data driven programming’.

The AIM Initiative is currently supporting mapping in 7 countries, although Anna is currently spending a lot of time in Liberia – a country where the 3 pillars of the initiative (mapping, national plans for case management and an integrated response) are being implemented in partnership with the Ministry of Health. The work can be challenging and stressful at times, she says, with obstacles such as “poor infrastructure, seasonality, governance and a health system still rebuilding after the war and Ebola” to contend with, but it can also serve as a model for what is possible to achieve with integration, government ownership and collaboration and responsive data driven support from partners.

Several ILEP members have been champions of the AIM Initiative, including Sasakawa Memorial Health Foundation, American Leprosy Missions and Effect:Hope, and Anna believes the leprosy sector can add considerable value to the broader fight against NTDs.

“Of all the NTDs, leprosy is the most advanced in terms of case management”, she says. “Morbidity management for leprosy is the best supported, has the most data and has the broadest expertise, compared to other diseases such as Buruli Ulcer and LF. The leprosy community could be a huge point of leverage of knowledge and reach for other NTDs; this could be a game-changer for other diseases and also benefit the leprosy community as it continues to demonstrate its relevance and importance in serving the needs of some of the world’s most neglected and vulnerable populations.”

Collaboration is clearly fundamental to Wickenden’s approach, and she is a member of the ILEP Institutional Fundraising network that was established towards the end of 2017. She believes the network has the potential to overcome ‘deeply ingrained’ organisational silos, and that it can serve as a platform for building trust, which is already ongoing in some areas.  She points to the success of other disease partnerships, such as ICTC, which used collaboration amongst stakeholders to demonstrate not only the tools for combatting trachoma, but also obtaining high-level political and financial commitment for action.

And she believes that the leprosy community and ILEP members are well positioned to lead the way in NTD control, case management and universal health coverage for NTDs. “I think there is a huge opportunity to collectively position ourselves as key collaborators and technical experts in areas that are traditionally neglected in NTDs, from early case detection and treatment, to stigma and inclusion. There is huge potential value in using this expertise to help strengthen health systems in endemic countries.”

ILEP appoints Geoff Warne as new CEO

On behalf of the ILEP Board, Jan van Berkel, ILEP President, has announced the appointment of Geoff Warne as Chief Executive Officer for the federation.

“I am delighted to announce that Geoff Warne, who is well known to many of us within ILEP and the wider leprosy community, will be taking up this important position,” says van Berkel.

“It is great to have Geoff back in ILEP in this crucial year for the international leprosy community, in which the Global Partnership for Zero Leprosy will deliver its Research Agenda and Roadmap to Operational Excellence. ILEP has the ambition and expertise to contribute as a key player in both exercises.

“The ILEP Board is looking forward to benefiting from Geoff’s impressive experience and track record as an NGO leader in the leprosy field.”

Geoff Warne was General Director of The Leprosy Mission International, an ILEP member, for ten years. He has extensive experience in leadership and senior management in health and disability NGOs, as well as within federated organisations, and has 17 years’ senior experience in the leprosy world. For the past two years, he has been working as a consultant in his native New Zealand.

Warne says: “It’s an exciting and dynamic time to be coming back into the leprosy world and especially into ILEP. The contribution of ILEP and its members to the goal of zero leprosy has been immense and I am inspired by the way it has grown in stature and capability in recent years. It’s a real privilege to come into a leadership role with this team.”

Warne will be joining the ILEP secretariat team in Geneva, Switzerland from mid-August, taking over the CEO role from Tanya Wood.

ILEP is a federation of 13 international non-governmental organisations united to create a world free from leprosy. Members work in 66 countries on 700 projects. ILEP supports a technical commission of world experts on leprosy, and has an advisory panel of persons affected by leprosy. ILEP was a founding member of the Global Partnership for Zero Leprosy – a new partnership launched in January 2018 to align the leprosy community and to accelerate effective collaboration towards the goal of zero leprosy.

Leaving no one behind through full implementation of the CRPD – Blog post

The Leprosy Mission sent a delegation to the 11^th conference of the state parties to the UN Convention on the Rights of Persons with Disabilities, held on 12-14 June in New York at UN HQ.

Here Pradeep Bagival, Head of Advocacy at The Leprosy Mission, shares his reflections on the conference. 

The UN CRPD entered its 10^th year since coming into force in 2008.  The conference witnessed participation from 177 countries that have ratified the convention which included 21 leprosy endemic countries. The participants included senior officials of the national governments, officials of the UN agencies, members of National Human Rights Institutions (NHRIs) NGOs, DPOs and individuals involved in promoting and protecting the rights of persons with disabilities.

Participation in the 11^thCoSP was of special significance to TLM and to persons affected by leprosy for the following reasons:

• The theme of the conference was ‘leaving no one behind through full implementation of the CRPD’. The CoSP became a platform for TLM to echo the voice of persons with leprosy related disabilities who are significant in number and have been hitherto excluded from the mainstream disability rights movement. For the first time in the history of CRPD, the issues concerning stigma and discrimination faced by persons with leprosy related disabilities were heard and made known to all the disability stakeholders attending the CoSP.
• The global conference provided an opportunity for TLM to appeal to 21 leprosy burdened countries who have ratified the CRPD to eliminate discrimination against persons affected by leprosy by implementing the Principles and Guidelines adopted by the UN General Assembly.

TLM also contributed to the Civil Society Forum – one of 6 civil society organisations to make a statement – emphasizing the need for engaging CSOs in the monitoring of the CRPD.

The Leprosy Mission was one of the select NGOs to speak during the Round Table discussions. Brent Morgan, The Leprosy Mission’s International Director, was one of the speakers who strongly articulated for the realization of the rights to political participation and equal recognition before the law for all persons with disabilities and specifically highlighted the denial of these critical rights in the case of persons with leprosy related disabilities.  He emphasized that  persons with leprosy related disabilities are perhaps the only group amongst people with disabilities who face ‘legal discrimination’on account of discriminatory legislations that are still force in many countries, denying them the right to political participation and equal recognition before the law.

A side event was organized by the Leprosy Mission along with the Disabled People’s International (DPI), a global cross- disability organization having its presence in 130 countries, and the Nippon Foundation, a social innovation hub supporting persons affected leprosy through provision of grants to NGOs on using ‘CRPD as a normative framework to end stigma and discrimination against persons with leprosy related disabilities.’

Amar Timalsina was one of the speakers who represented persons affected and shared his personal experiences of being subjected to the prevailing stigma and discrimination against persons affected by leprosy. Mr. Mohammad Lofty, represented DPI and highlighted some of the collaborative efforts of the DPI in including persons affected by leprosy within the DPO network globally.  Pradeep Bagival spoke about the barriers persons with leprosy related disabilities encounter in realizing some of the critical rights guaranteed under the CRPD. The panel discussion was moderated by Brent Morgan.

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