CEPAT program is a 5 year TB control program through community empowerment funded by USAID. This program works in 3 provinces in Indonesia and one of them is West Sumatera. In the field, CEPAT involves 14 community coordinators from various background working in each districts. In this article, we will expose on the success story of CEPAT Community Coordinator of Solok district, West Sumatera.
Zulhendrizon, CEPAT-JKM COD: from zero to hero
Zulhendrizon, 49 years old, is one of CEPAT JKM CODs (Community Organization Development). He have been working with TB community in Solok,a district in West Sumatra since the beginning of CEPAT project in 2013. He and his community have great efforts to support people with TB symptom to go to diagnose and completed treatment. Together with the 202 community cadres involved in CEPAT program in this district, they have tested more than 1000 people who had TB symptoms and approximately 100 people among them were positive of having the disease until 2015. His supports to the cadres and patients are fundamentally projected from his own experience as a TB patient.
His passion to help TB patients started from his own miserable story as a TB patient that was devastated on his economy that time. Zulhendrizon is nick name is Mr. Zon. He previously worked as a teacher and furnitures maker. He started to feel sick with prolonged cough in late of 2000 and only had self treatment by purchasing over the counter drugs. For almost a year he always did that to reduce the sickness, Then he became more sick and started to cough in blood. His weight reduced to only 29 kgs( from 42 kgs. He was so weak and unable to workthat hee ended up have to to quit his job and lost his income.
With the help of his oldest child, aged 10 years old, he held Mr. Zon’s body toe visitPuskesmas Junjung Sirih, Paninggahan subdistrict,nearby his house. There, he wasdiagnosed with Tuberculosis. He did not get an immediate TB treatment because the doctor at the Puskesmas said that his condition was impossible for him to endure with the side effects of TB drugs. The doctor wanted him to get an initial treatment at the hospitalis to get him ready to start the TB treatment but he refused the doctor’s suggestion many times. The hospital was far and he could not afford to pay for the transportation from Paninggahan to Solok Hospital, those were the reasons that made him insist to get the treatment from the Puskesmas. . By signing an informed consent stating that the doctor would not be responsible with the complications that he would get, the doctor agreed to give him the drugs from the Puskesmas. He started to initiate the 6 months treatment, with intensive home visit by the Puskesmas health officer.
During the medication, he only stayed at home and struggled with the side effects. He really needed supports and care from the family. He did not have any drug observant too.He had wished that his wife would have taken care of him. But at the contrary, having bad stigma of TB, his wife always treated him inappropriately since she knew that her husband disease was TB.. She thought that TB could never be cured. Until one day she asked him to leave the house and divorce with her. In West Sumatera, women are the owner of the house because they inherit it from their mother.
Mr. Zon did not know where to goHe did not have parents, brothers, nor sisters, but only extended family whose economic status was also low. He did not want to bother them. He was homeless until his friend, Mr. Raflis, S.Ag, saved him and brought him to his family. Mr. Raflis was Mr. Zon’s best friend since their childhood. Mr. Raflis and his family treated Mr. Zon as a familyand was very supportive to him.
After completed the treatment in 6 months and considered recovered from TB, he started to build his life from zero. As TB was a catastrophe in his life, he lost his career and even family. He realized that fighting with TB along was not easy and to complete the treatment took very long time. He become so motivated to help people to fight TB. In 2004, he continued his life by working as a “tukang ojek” (motorcycle driver) and at the same time also seeked and identified TB suspected people. He sent poor people who had TB symptoms to Puskesmas without asking them to pay for the transportation cost because he knew that having no money was a factor that might delay TB diagnosis.. He even helped as he could, with his own money or other efforts. He also sometimes borrowed his friend’s car to send the patients to RS Solok, RS. HM Jamil in Padang, and BP4. He did that continuously that he was regarded as a TB icon of the Nagari (village).
Mr. Zon was known as a good person that many people trusted and supported him. He had many friends. As a TB survivor and volunteer, he was quite often linking rich and generous people in Paninggahan with TB patients, especially those who were very poor. The rich people that he met were such as Wali Nagari, Datuak (cultural leader), and local representative. He would talk to them about his poor identified TB patients’condition and advocate them to provide support. They usually gave the money/ food/ support directly to the patients. Mr. Zon did not ask anything from them. He only believed that the help would be granted with good deeds from God.
Being acknowledged as the TB icon in Solok, Mr. Zon was often invited as a speaker to provide testimony as a TB survivor and motivation to TB patients and community. In 2008, he was interviewed by Amatir Radio West Sumatera to talk about his TB experiences and efforts to help TB control in Solok. Following that, Solok Health Office also often invited him and included him in TB control as a volunteer. His network with TB community, from Health office, subdistrict offices and Puskesmas in Solok, was very developed.
In 2011, he established a TB community named IMPUT (Ikatan Masyarakat Peduli TB/ TB care community association). The community consisted of 25 people which include his close friends, people who care/were active inthe community, and ex-TB patients from the same Nagari. This was a non-paid community, which was under the supervision of Wali Nagari (Head of village) and Paninggahan Head of Puskesmas, Junjung Sirih subdistrict. Their activity was to identify people with TB symptoms, coordinate with the Puskesmas, become patient’s TB drug observer, and help them. 15 people from this community were then recruited as cadres in CEPAT –JKM in 2013.
In 2012, he was invited by Indonesian Ministry of Health, dept. P2PL for people affected by TB in Indonesia, to attend a meeting in Surabaya. There, JAPETI (Jaringan Peduli Tuberkulosis Indonesia) was initiated and formed. Mr. Zon became the coordinator for West Sumatera province. This organisation, including Mr. Zon, was always invited to attend the meeting in JAPETI discussion.
In West Sumatera province, at the MDGs meeting, Mr. Zon shared his letter about his TB history. Mr. Ali Gufran, the vice minister of Indonesian Health Ministry, cried while listening to the letter read by him. He huged Mr. Zon and asked if he might keep the letter and put it at the Indonesian Ministry of Health. Mr. Zon’ s name was often mentioned for his struggle with TB during the national meetings because the letter was archieved in one of the TB national strategies books.
In January 2013, before TB CEPAT was launched in West Sumatera, the Health Office recommended his name to involve in the program. He always emphasized to his cadres on sincerity because God will grant it with good deeds in life and future life. “Don’t ignore TB patients in our community,if that happens it means that we let ourselves or family to be infected with TB”, that’s part of Zulhendrizon messages to encourage the community.
He also encourages the cadres to other cadres with different subdsitrict when meeting with TB patients from their working area to be followed up. Similarly, when Mr. Zon finds a TB patient, he will traced his address. And if he/she stayed in one of CEPAT area, he will contact the COD to delegate cadres from the patient’s subdistrict/village to assist the patient. What’s important for him is to save TB patients’ life not to experience what he had.
Now, Mr. Zon, under the CEPAT program, has been successfully mobilize people by helping over 1000 people with TB symptoms to be tested at Puskesmas in 8 subdistricts in Solok. Approximately 100 patients had undergone TB treatment and received support from his community cadres. He also succeeded in conducting Randai (traditional music show) by involving informal leaders in Solok and distributed TB IEC materials during the show.
He also succeeded to advocate subdistrict office in Junjung Sirih subditrict. CEPAT program is greatly supported in this subdistrict. They already established JKM community of Junjung Sirih who commit to hold monthly meetings. The community meetings are accomodated by the Head of Subdistrict and held at the subdistrict office. In the meeting, all Junjung Sirih cadres, PKK, bundo kanduang (women cultural leader), and the wives of Wali Nagari. They usually discuss about health issues, and particularly TB in their subdistict. In the discussion Mr. Zon and the cadres report about new TB cases, the names, the location, and follow up of previous patients. If any special problems occur, the head of subdistrict will offer solutions/regulations to support the patients in their subdistrict. (written by Ivana/COD coordinator)