Reducing Leprosy and Increasing Inclusion Programme

The Reducing Leprosy and Increasing Inclusion Programme partners with mainstream organisations – hospitals, NGOs/INGOs, churches, and communities, - in Myanmar to ensure that people affected by leprosy and/or disability are able to access information, help, and support to which they are entitled.

Regarding leprosy, this project addresses the following problems:

• Lack of knowledge and understanding of leprosy amongst mainstream medical practitioners and other groups (i.e., communities, NGOs/INGOs, churches, ministries, etc.)
• Poor treatment and not enough early case detection of leprosy by government services
• Lack of a proper referral mechanism for the treatment of leprosy

Regarding support for people with disabilities (including those with leprosy-related disabilities), this project will address the following problems:

• Significant barriers to inclusion (attitudinal, physical, and institutional)
• The weakness of self-help groups which are unable to advocate for and support people with disabilities in their communities
• Lack of knowledge of care-givers around physiotherapy to increase the mobility of persons with disabilities
• Lack of knowledge and connections around access to mobility devices
• Very few disability and leprosy champions in the country, especially outside of Yangon (commercial capital of Myanmar)

There is still a low level of awareness and understanding about leprosy in some communities in Myanmar, and a lack of a proper system for mapping the disease and ensuring people affected receive relevant health, economic, and societal support.

There is also a need to help embed the Disability Act (2015), which states that all institutions have to ensure that people with disabilities are able to access full services; this requires some adapting both practically, and through changing attitudes. TLM supports this work as part of its commitment to seeing zero disability as a result of leprosy.

To deliver its commitment to seeing zero transmission, TLM is also working to ensure individuals across Myanmar are aware of both the possible symptoms and ways in which leprosy can be mitigated.

The Reducing Leprosy and Increasing Inclusion Programme first undertook a baseline survey with the target community groups, to understand what the levels of understanding and awareness of leprosy and its symptoms were, and how well-prepared key workers – health workers, education providers, local leaders – were with regard to the needs of people affected by leprosy.

It then focused on delivering improved knowledge, early case detection, and working through organisations across different levels of society to respond well; all whilst ensuring that people affected by leprosy are included in decisions about all aspects of their lives.

The targeted leprosy-specific outcomes for this project are:

• Continued support of Mawlamyine Christian Leprosy Hospital, so they can deliver quality medical care and rehabilitation to people affected by leprosy and disability
• Improved referral mechanism to the Mawlamyine Hospital and the government-run Yenanthar Leprosy Hospital to result in timely/quality access to treatment and services.
• Increased empowerment of people affected by leprosy and/or disability for self-advocacy
• Reduced barriers (attitudinal, physical, and institutional) to result in greater social integration and increased wellbeing for people affected by leprosy and disability
• The overall problem that this project will address is leprosy transmission and prevalence of grade 2 disability in Myanmar, as well as the lack of an enabling environment for the realisation of rights of persons affected by disability and/or leprosy
• Improved knowledge and capacity around leprosy
• Improved early case detection

Specialist hospitals such as Mawlamyine (MCLH) and Yae Nant Thar (YLH) in Myanmar and a wide range of local and national bodies, including churches and development and humanitarian organisations.

The political situation in Myanmar means that sometimes work is interrupted.

Attitudes can be a challenge - ancient, incorrect beliefs about how leprosy is transmitted are still held in some geographical areas; stories such as past life sin, bad/impure blood, and eating strange food such as poisonous snakes causing the disease. People affected by leprosy also reported feeling isolated because community members do not want to drink water or share food with them.

The programme, therefore, targets community groups with awareness-raising and educational talks to challenge these assumptions, and begin to remove any stigma.

Gradually the Reducing Leprosy and Increasing Inclusion Programme is showing community members that people with disabilities need not miss out on employment or opportunities. One community mobilizer in Shwe Pyi Thar, Ma Than Than Maw, has a physical deformity but is highly motivated and active in her volunteering work for other people with disabilities, supported by her parents who accompany her to meetings and training sessions.