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| Alex Kumar with Berkie at her weaving co-operative Sept 2018 |
I visited Ethiopia with Alex
Kumar and with Saba, and Berkie’s daughter
we photographed and interviewed leprosy patients
for the New Face campaign. I enjoyed the Neglected Tropical Diseases (NTD) conference.
We celebrated Ethiopian New Year with fire in Meskel square. Ethiopian politics have improved the new
prime minister Abiy Ahmed allowing democracy since he took up his post in April.
We launched our New Face for
Leprosy campaign in Ethiopia in Sept 2018.
I first visited Ethiopia in 1994 to learn about leprosy and have leprosy
projects there since then. The New Face
campaign aims at improving the image of leprosy and we have a small grant from
the LSHTM social engagement project to support this work. The project team
comprises myself, Saba Lambert our leprosy team member in Ethiopia and Alex
Kumar, a doctor and photographer who was my DTMH tutee in 2016. Saba is
passionate about improving the lives of leprosy patients through listening to their
stories and helping them. Alex has
photographed public health in many settings.
Alex photographed patients in several
locations. A taxi driver posed by his income generating vehicle and a boy beside
his shoe shine business. Several women run a weaving co-operative producing
beautiful white cotton embroidered with Ethiopian designs. Alex spent £100
there on cloth, one of their biggest spenders. I brought home a pan holder
decorated with faces styled on Ethiopian murals. Berkie leads the co-operative and was thrown
out of her community when her leprosy was diagnosed, she overcome many obstacles
related to her leprosy and now empowers others. She talked at a leprosy meeting
and at the NTD conference. Her daughter
is a psychology student and she interviewed patients for us. Many revealed that they had been suicidal at
times. The taxi driver had been illegally
deported from UEA when his leprosy had been diagnosed and we published his
story in Leprosy Review. We are translating their narratives and plan an
exhibition for next World Leprosy Day (Jan 27 2019). Some of the patients did
not want their pictures to be shown in Ethiopia because they had not disclosed
their diagnosis to their family and friends, but they did not mind their
pictures being shown overseas. The
people with leprosy wanted photos to give their families, these have to depict
them looking serious, tthe favoured style for portraits here.
I visited ALERT, the leprosy
hospital and AHRI the research centre.
In the hospital I reviewed a young man with bad erythema nodosum
leprosum. This is the painful inflammatory
complication that patients may experience after successful treatment. This man in his late 20’s had completed hid
multi-drug treatment but he needed high doses of steroids and nearly died from
steroid related complications.
A leprosy research day preceded
the NTD meeting. Wim van Brakel presented his findings on stigma showing that 40%
of patients had poor mental health and 20% had suicidal thoughts, we found this
as well when interviewing patients for the new Face project. These negative feelings can be reduced by
counselling especially when it includes a human rights based approach. I talked
about improving the detection and management of reactions in leprosy patients. I
have argued in recent talks that WHO should be providing steroids to the
national leprosy programmes because so many patients require them to treat the inflammation
which complicates leprosy.
This was my first attendance at
the NTD network conference which links the various NGO’s working on NTDS, WHO
and governments and promotes cross sectoral collaboration. This year held in the attractive modern African
Union building in Addis Ababa. I
appreciated the strong patient voice in this meeting with Indian patient
advocates speaking at the opening session. I enjoyed small group work in a
session on telling NTD stories with patient input. It is vital to talk with the patients about
how their story might be presented in the media and be prepared for it to be
twisted in its presentation. Pitching stories to the media is a vital part of
NGO work and it is critical to have patient consent for their stories to be
told. The conference is collectively keen on behaviuor modification especially
the WASH (water access, sanitation, Hygiene) initiative. But it is difficult to
get people to wash their hands even when there is water. We are reinventing old truths long known, the
Victorians knew that sewerage disposal was important and Balzaget built sewers
for London, my grandfather knew that sewerage was important and was designing
clean water systems in Indonesia in the 1920’s. more recently the Indian prime minister Narendra Modi has
launched a national access to toilet campaign which should help disease control
and empower women in India. Compassion now has its own WHO department.
The first night the Leprosy group
hosted a conference dinner with music and photos with a positive image of
leprosy. The Trachoma initiative (TTI) hosted the final dinner with many
photos of the progress TTI work over the years and a quote from my colleague Sol,
(Anthony Solomon, an Ozzie who trained with us in London and Is now head of the
WHO trachoma prog) about the need for mapping to establish disease burdens. We were shown a short film about trachoma. Elimination
of trachoma is going to be difficult, the elimination promise is reliant on the
drug company Pfzier continuing to supply Azithromycin for treatment in
communities. I predict this will be needed for decades in Ethiopia to treat
infection and also improved living
conditions.
The Conference was advertised as
being paperless and one found out about the programme though an app that I was initially suspicious
of but soon enjoyed using.
The conference is keen on
elimination of disease and the latest disease to be targeted with elimination
was launched, podoconiosis. I fear that
elimination will create the same challenges we have seen in Leprosy where
perception of elimination caused a loss of resources and effort for managing
leprosy. Podoconiosis can be prevented by people wearing shoes but it will
takes decades. Alex visited Baha Dar in N Ethiopia to photograph the
podoconiosis work there and found that no-one was wearing shoes even in the
programme.
I enjoyed the conference with
new approaches to disease control such
as behavior modification and meeting people working in different fields. It was
refreshing to be at a medical conference where the patients had a stronger
voice and people talked about human rights.
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| weaving in a co-operative in Addis abba |
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| Blue green woven cloth |
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