Fw: Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

 

 

 

Leprosy Mailing List – July 14,  2022

 

Ref.: (LML) The agenda of the upcoming ILC and problems encountered in the field do not overlap

 

From:  Kerstin Beise and Al Kadri, PerMaTa South Sulawesi – YDTI, Makassar, Indonesia

Dear Pieter,

In reply to the mail from Sunil Deepak on access to leprosy services in Indonesia,

Greetings From PerMaTa South Sulawesi – YDTI in Indonesia. Health and rehab services for persons affected by leprosy in Indonesia have been getting worse over the past 10 years. Allow us to briefly share our perspective on this.

Main reasons are

1. The regulations of the UHC system in Indonesia, that do not recognize the need for any accommodations in the rehabilitation and care of persons affected by leprosy after RFT.
2. The worldwide practice to declare leprosy eliminated as a public health problem, resulting in a lack of funds and capacities.
3. The transformation of the three former referral hospitals for leprosy into general hospitals.

These led to a serious lack of knowledge about and access to treatment of reactions, wound care, septic and reconstructive surgery at all levels from health center to provincial to national level (apologies to those in Indonesia who still have this knowledge and are committed to keep it this way!).

Orthopaedical shoes that used to be free, now cost 2 million rupiah ($133) because UHC policy says so.

We visited a young man just today, in a district 4 hours from Makassar with severe reactions, unable to walk, covered in sores, pointed out by the health center where the leprosy worker is at a loss as to where to refer him.

We can go on with examples.

 

When NLR phased out their strong rehabilitation support, the idea was that inclusive and community-near services would develop. However, due to a lack of awareness, stigma is still a major barrier to accessing health services close to where a person lives. Worse still, leprosy-specific services are almost non-existent on district level. Therefore, people have to travel to the province's former leprosy hospitals.

As much as these want to help, they are severely limited by what the UHC system is able to cover. For example, inpatient ulcer care is generally covered for only 3 days before people are send back to their home districts, where services are not available. Physiotherapy and protheses fitting is only provided as an outpatient service. Most people affected by leprosy can hardly afford the trip to the province hospital, let alone stay in a guesthouse while undergoing outpatient therapy or daily wound care. That is why the wards of the large former leprosy hospital in Makassar are empty: not because there are no more patients, but because these patients cannot come and cannot be admitted.

One of our main request here is that the UHC system recognizes that people affected by leprosy need (reasonable) accommodation based on the Indonesian Disability Law / CRPD. For example, due to the combined factors of stigma, poverty and sensory loss, some require longer periods of inpatient care than other patients would.

 

Thank you, best wishes,

 

Al Kadri, Kerstin

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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