SFLG

News items on SFLG website

Father Damien’s Feast Day – 10 May 2021

International Nurses Day – 12 May 2021

Kate Marsden’s birthday – 13 May 2021

Press release coverage

Independent Catholic News reported by Jo Siedlecka

Church Times reported by Tim Wyatt

The Irish Catholic reported by Jason Osborne

Press release Christian charities to diagnose leprosy using a smartphone (28 March 2021) – news that TLMEW and SFLG are collaborating on research for the use of spectral imaging to diagnose leprosy.

IDEA for SFLG website HOME – montage of photos or used in a carousel

Press release coverage

Inspire magazine reported by Russ Bravo

Catholic Herald reported by Christopher Altieri

Independent Catholic News reported by Jo Siedlecka

CBCEW Catholic Bishops Conference

PPT on Potential PR Story

Press release Archbishop Wilson calls for C19 vaccine to be given to the most marginalised in the poor countries (28 Februrary 2021) SFLG urges nations with marginalised and vulnerable communities to make sure that the C-19 vaccine is proactively given.

Clare McIntosh – Director

SFLG Director, Clare McIntosh

St Anthony’s Leprosy Centre

Discussion points on leprosy

1. The L-word
Despite the word “leper” being used in the bible and often in the press, people with leprosy find the term leper deeply offensive and so it should be avoided at all costs. Some would say that the acronym PAL (Personal Affected by Leprosy) is almost as bad. People with leprosy would say that once they have been treated for leprosy in hospital, that they should not be referred to as leprosy patients, even if they have disabilities caused by leprosy.

2. Hansen’s disease
A medical term for leprosy, much favoured by some people with leprosy (as advocated at the 20th ILC in Manila in 2019) as it avoids the connotations of the L-word. However, for those organisations with leprosy in their titles and in order to fundraise with compassion, many NGOs believe that the word LEPROSY must remain however, the discussion should continue.

3. Eliminate (eradicate). The two words should not be used and alternatives such as beat leprosy, defeat leprosy, end leprosy, working towards a leprosy-free world are preferable.

Back story: in 2000 the WHO declared that leprosy had been eliminated at a global level. The maths, on a global basis, were probably true. (Leprosy is not deemed a public health issue, when fewer than one per ten thousand people in a population have leprosy). It was also a great PR win for the WHO. However, the affect was to encourage national healthcare providers to cut back on support for leprosy. So, over time, the expertise in the field started to decline and in particular, the knowledge of how to recognise and diagnose leprosy receded. The awful true started to dawn, when children with leprosy also developed G2D. This proxy for a lack of healthcare provision demonstrated that leprosy was very much in the community in some countries or in some isolated pockets. The term eradicate and eliminate are therefore, within the leprosy world, should not be used because leprosy is long way from ending. There is an uneasy peace with the WHO as a result.

4. Conventions such as multidrug therapy

5. Triple Zero Campaign – A campaign and branding developed by ILEP and ILEP members in 2015 to define and align common objectives. Many leprosy organistions use this languag. Zero Transmission/Zero Disability/Zero Discrimination

6. ILEPInternational Anti-Leprosy Federation and its members. It’s new President is Brent Morgan.

7. GPLZGlobal Partnership for Zero Leprosy and its members – ILEP is somewhat eclipsed by the GPZL – partly because it has greater funding,

9. Selection of leading actors in leprosy (excluding historical) Brent Morgan (TLM and ILEP) Alice Cruz, (UN Special Rapporteur) Mathias Duck advocate for Zero Leprosy Discrimination now working for TLMI, Yohei Sasakawa (Nippon Foundation) Dr Erwin Cooreman (WHO) Professor Diana Lockwood,(LSHTM) Geoff Prescott (Lepra) – many, many others

10. WHO WER (Weekly Epidemiology Report) published late August/early September
September 2020 WHO WER

11. Leprosy event and debate in UK Parliament Fiona Bruce MP, MP for Congleton and formerly Vice Chair of the APPG for MNTDs, asked Catherine West MP, the new Chair to agree to an event in Parliament to highlight leprosy. It was scheduled for July 2020 but was postponed due to Covid-19. This photo, taken in Spring 2019 shows the APPG for Malaria and Neglected Tropical Diseases (Catherine West MP) and The UK Coalition for Malaria and Neglected Tropical Diseases.

12.

International Leprosy Congress – triennial conference. 20th ILC was held in Manila in 2019. The 21st ILC was due to be hosted in Hyderabad.

14. World Leprosy Day – celebrated on the last Sunday in January, commemorates Mahatma Gandhi’s death.

15. Infolep

16. Neglected Tropical Diseases – leprosy is only one. See below for a quick summary. Linkd: Neglected Tropical Diseases NGO Network, United to Combat NTDs

Developed for the APPG Malaria and NTD annual review 2019
%d bloggers like this: