Leprosy Mailing List – July 29, 2022
Ref.: (LML) LML sessions at ILC 2022
From: Editorial Board LM, Maastricht, the Netherlands
Dear colleagues,
Compared to even ten years ago, the governments are playing a much bigger role in leprosy control while the role played by ILEP associations has decreased and seems to be steadily decreasing. Organizations of affected persons are there but they mostly represent decreasing numbers of old disabled patients, while the new affected persons have less disabilities and lack the "leprosy identity", so often they do not wish to join them.
Even ILEP associations are depending upon the governments in Europe to fund their work and most of the funding comes for NTDs or combined programs while few leprosy-only projects get any institutional funding. All these factors combined mean that their impact on influencing government policies and programs has decreased and is decreasing. In this scenario, the best way to influence governments is through professionals and through WHO. Bodies like ILA, as well as discussion forums like LML, play an important role in this situation.
For the LML session on the ILC in Hyderabad, a number of proposals have been received. All are very worthwhile to discuss.
- Quality of clinical care during treatment and particularly after treatment; too many continue to deteriorate after being diagnosed.
- In this context. the financing by governments and NGOs should be addressed.
- The representation of leprosy patients. Who and what do they represent?
- Are ILEP members by their effort to raise money not increasing the stigma? How do you raise the money needed for care when the WHO and governments fail?
- Epidemiology: why does the present approach not work?
- What can be said about the Skin STD approach proposed by WHO?
Our proposal is to prepare more detailed questions on the above-mentioned points, collect answers (including observations and experiences) and ask experts to debate.
LML will have a formal one-hour session during the regular physical/virtual ILC 2022 congress. A more informal session would be welcome for example in the evening or just before the congress.
Considering our discussion points, we have to consider how we could make optimal use of the time available.
Are there any comments (suggestions) among the LML readers? Which points are the most important?
Best regards,
Ben Naafs
Sunil Deepak
Savatore Noto
Pieter Schreuder
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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