Infectious diseases cause very complex problems not only medical but also extend to social, economic, cultural, social, and political issues. Leprosy, TB, and HIV are still feared by the community, including families and some health workers. This is due to the lack of knowledge/ misunderstanding, erroneous beliefs about leprosy, and the resulting defects, resulting in high levels of stigma and discrimination in people affected by leprosy. The goal of the project is to support and accelerate the elimination of leprosy, TB, HIV, and malaria in Biak, Papua. The main objective of this project is to increase detection and case holding of leprosy, TB, HIV, and Malaria in Biak particularly those who encountered complications. The specific objectives of this project are to support those people with complications of leprosy, TB, HIV, and malaria and take medicine regularly and receive nutrition supports such as milk, soya bean as well as soap, and to get support from family members.
Executive Summary
XXXXXXX is a forum for community activities that leads to handling of leprosy and other communicable diseases (TB, HIV and Malaria) through strategic services: promotion, prevention, treatment, rehabilitation and empowerment. Leprosy, TB, HIV and malaria are endemic in Biak. The infectious diseases cause very complex problems not only medical but also extend to social, economic, cultural, social and political issues. Leprosy, TB, and HIV are still feared by the community, including families and some health workers. This is due to the lack of knowledge/misunderstanding, erroneous beliefs about leprosy and the resulting defects, resulting in high levels of stigma and discrimination in people affected by leprosy. There were 150 – 200 new cases of leprosy detected in Biak annually, Tuberculosis were about 832 new cases in 2018 and Cumulative HIV/AIDS were about 2218 cases in the year of 2018. Malaria was about 4/1000 in population. The total population in Biak was about 150,000. We work in community level in particularly out reaching, community empowerment, and support for nutrition, treatment observer and training health cadres. We will support and enter for elimination of leprosy, TB, HIV and Malaria in Biak and Papua.
Based on study in Pania in 2013, there was increase detection of HIV/73 times more through Proactive Health Seeking Behavior namely involving community (role of community) and Health provider in detection and treatment and using local wisdom. (Robby Kayame and Arry Pongtiku,2014). In this project we will do similar, raising awareness using local wisdom, community participation (health cadres) and health providers worked together in detection and treatment observers. We develop integration program leprosy, HIV and malaria. Community will be actively involved in the design, implementation, evaluation, structure and governance of the project. Some people affected by leprosy, TB and HIV will be involved as health cadres. We will select about 10 villages with high endemic cases for implementation of this project.
Although we are a new foundation however our strength: we have experienced and educated staffs and supported by health professionals and health cadres. We understand local situation including cultural approaches. We will work with our stakeholder Government and other NGOs. Very limited of NGOs operated in Biak Numfor. Drugs will be supplied free of charge from government.
The proposal project is XXX Grant Dollars.
Organizational Background
XXXXXX was firstly established in early 2018 and pioneered by XXXXX, a Dutch citizen and XXXXX MHM, a doctor and health practitioner who was very active in managing leprosy in Papua. XXXX felt compassion after watching a documentary film in Netherlands television where XXXX served leprosy patients in Papua and visited by leprosy ambassador XXXXX (a film star) played in a fund-raising film for XXXX was an Indonesian who had lived for more than 30 years in the Netherlands who was very interested in helping leprosy patients in Papua. Mother Evie looked for information and she tried to email XXXXXXXXX, within not more than 24 hours there was a reply from Papua waiting for the arrival of Mother Evie. For this reason, Evie decided to go to Indonesia specifically to Papua to see the leprosy cases. Mother Evie met XXXXXXXXX in Papua, they went together to see the cases of leprosy in Jayapura district, Waropen district, and. Biak Numfor district. From the results of the visit, it was decided to form a new leprosy foundation that could help leprosy services in Papua. The word of vlinder was taken from Dutch which means a butterfly. In accordance with the philosophy of butterfly we agreed to serve leprosy it must be like a butterfly which has a process from caterpillars, cocoons and becomes mature as a beautiful and free butterfly. These foundations serve leprosy from finding cases, treating them, from a hopeless to become a hope. Patients and their families will be smiling. The foundation programs are expected to be carried out in Biak Numfor Districtand is expected to continue to develop and expand in Papua and Indonesia. Other communicable diseases such as Tuberculosis, HIV/ADS and malaria will be included where this area still high endemic and we have experience for integration. XXXXX is more focused on community empowerment, training and. advocacy. For the time being, XXXXX received small fund from personal supports (from mother Evie,from Netherlands. We will learn to do fund raising.
Vision and Mission of Organisation
Vision
Building Papua Free of leprosy and Other Communicable Diseases (TB, HIV/AIDS and Malaria)
Mission
- Help to increase community participation in case detection and case holding.
- Reaching people affected by leprosy and other infectious diseases (TB, HIV /AIDS) through active surveillance, visits and home contact and creating awareness.
- Help to reduce disability rates due to leprosy
- Help to reduce stigma and discrimination Leprosy and TB, HIV/AIDS in the community through education and empowerment of people.
- Empowering people affected by leprosy, TB, HIV and Malaria by providing creative economic training.
- Help to improve the skill and motivation of health staff in providing health services to people with leprosy, TB, HIV and malaria.
- Local wisdom/cultural approach in controlling leprosy,TB, HIV/AIDS and Malaria
- Support to achieve elimination of leprosy, TB, HIV/AIDS and malaria in Biak and Papua
Problem Statement
World Health Organization (WHO) noted that the number of new leprosy cases in the world in 2011 was around 219,075. Of these, most cases were in the South East Asian region (160,132) followed by the American region (36,832), regional Africa (12,673), and the remainder in other regions of the world. For the situation of leprosy in Indonesia, according to WHO in 2011 the number of new cases found was 20,023 and the number of registered leprosy cases in Indonesia in early 2012 was 23.169. Meanwhile, leprosy cases in the Biak Numfor Regency in Papua were detected annually in the range from 150 to 200 new cases. In 2011 the number of leprosy patients was increasing sharply increasing with the number of 273 new leprosy patients consisting of 140 PB leprosy cases and 133 MB leprosy cases and among them about 32.6% of leprosy cases were children. This data continues to increase with the increase in early detection services for leprosy cases at health centers. The latest data in 2017 at the Biak Numfor District Health Office showed that there were 155 new cases of leprosy found and among them 38 (24.5%) children, meaning that the leprosy transmission process was still very high in the community.
Concept of illness of Papuan is different, if he/she cannot walk, cannot eat, means he/she is being ill, it is therefore there are always delay of presentation.10- 20% of leprosy, TB, HIV and malaria cases get complication and need to do home visits and extra nutrition.
Given the complexity of the current problem of leprosy in Papua, especially in the Biak Numfor District, the Vlinder Papua Foundation seeks to assist in an integrated and comprehensive control program through strategies that are in line with the endemicity of leprosy and pay attention to aspects of medical rehabilitation and socio-economic rehabilitation to improve people’s quality of life which experienced leprosy in Biak Numfor Regency. Yayasan Vlinder Papua will continue to support not only leprosy but also TB and HIV. With total population:152,000 people, Cumulative cases of HIV/AIDS per 31 October 2018 detected in Biak Numfor was 2218 and 495 cases already died. Tuberculosis was the top cause of death from infectious diseases, there were 832 new cases detected in 2018. Malaria data in Biak showed Annual Parasite Incidence (API) was 4/1000 population compared to national target <1/1000 population.
From 34 provinces in Indonesia, there are 19 provinces that supported of NLR, where more cases of leprosy reported. Overall, there were about 17000 new cases detected annually. High new cases in 2015 were respectively reported from the provinces of Jawa Timur (3983), Jawa Barat (2026), Jawa Tengah (1790), Sulawesi Selatan (1220), Papua (1084) and Banten (1026).
Papua also is the lowest Human Development Index (HDI) among provinces in Indonesia. With applied this project, we will contribute to HDI particularly in Biak and support as strategy to poverty alleviation.
Goal and Objectives Of This Project
The goal of the project is to support and accelerate the elimination of leprosy, TB, HIV and malaria in Biak, Papua. We follow global commitment.
The main objective of this project is to increase detection and case holding of leprosy, TB, HIV and Malaria in Biak particularly those who encountered complication
The specific objectives of this project are:
- To support those people with complication of leprosy, TB, HIV and malaria and take medicine regularly and receive nutrition supports such milk, soya bean as well as soap
- To get support from family member
Some indicators (SMART) for this project:
- Number of leprosy patients improved after complication (Target > 80%)
- Number of TB patients improved after complication (Target > 80%)
- Number of HIV patients improved after complication (Target > 80%)
- Number of malaria patients improved after complication (Target > 80%)
- Successful treatment of leprosy with supported cadres (%) (More than 90%)
- Successful treatment of TB with supported cadres (%) (More than 90%)
- Successful treatment of HIV/AIDS with supported cadres (%)
- Successful treatment of malaria with supported cadres (%)
- Data of patients that referred to hospital
- Data regarding family supports during complication (qualitative) deep interview
Note: Target those who received nutrition support and soap: 40 people.
Scope of Work
XXXXX will limit to scope of this project regarding integration of leprosy, TB, HIV and Malaria and focus on Biak Numfor district. We implement health reaching of those patients with complication and also involving both health cadres/community and health providers. Target: 40 people with complication and 5 villages. We have time limits about 12 months.
Beneficiaries
The beneficiaries of the program will go to those persons affected by leprosy, TB, HIV, malaria as well their families. They are Papuan. Those people in some practices are marginalized; they are not infrequently encountered discrimination and social stigma. Health cadres and community as indigenous population are beneficiaries because they involve starting in planning until to come to decision making in this project. Target: 40 people with complication.
