Illustration of Residents Concerned about AIDS visits to homes to motivate PLWHA to take ARVs regularly
Human Immunodeficiency Virus (HIV) menyerang dan menghancurkan sel darah putih atau limfosit yang merupakan bagian penting dari sistem kekebalan tubuh atau dikenal dengan istilah medis CD4. Jika CD4 sudah diserang oleh virus HIV maka kekebalan tubuh akan menjadi lemah, sehingga mudah terserang berbagai penyakit yang disebut penyakit infeksi oportunistik. Oleh karena itu diperlukan obat untuk menekan jumlah virus yang disebut obat antiretroviral (ARV).
ARV drugs work by preventing HIV from multiplying or multiplying, so that the amount of HIV in the blood (viral load) can be reduced. Having less HIV in the body gives the immune system a chance to recover and produce more CD4 cells. So, the main goal of giving ARVs is to suppress the amount of virus as low as possible (until it is undetectable), then the benefits are that the body’s immunity is maintained, the quality of life is maintained so that it can remain productive, it can restore the immune system. ARVs are also useful for reducing transmission. Undetectable = untransmittable, meaning not detected = not transmitting, so that it will improve the immune status of people living with HIV and reduce deaths from opportunistic infections.
The Antiretroviral Therapy Method (ART) uses a combination of 3 ARV drugs known as combination therapy. ART works much better than just one ARV. how to use this drug to prevent the emergence of resistance. If only one type of ARV is used, the virus easily develops resistance to the ARV. Therefore, the use of only one type of ARV (which is called monotherapy) is not recommended.
Before starting to take ARVs, PLWHA are given counseling services as a medical procedure so that PLWHA are ready to take medicine every day, including to anticipate boredom or unpreparedness for side effects. In general, the problem associated with ARV therapy is that many cases of PLHIV stop taking ARV medication, known as lost to follow-up (LFU). The cause of people living with HIV to stop taking ARV drugs is boredom and experiencing side effects. LFU experienced by PLWHA is not easy to overcome, because the potential for LFU to return is very likely to occur. The background to this kind of situation is not only related to the physical and psychological conditions of PLWHA, but also the family and community environment which greatly influences the occurrence of LFU again.
Workshop on Optimizing Continuous Comprehensive Service Systems and Strategies for Minimizing LFU in Belu Regency
Causes of Halting ARV Consumption
To examine more deeply the factors causing this cessation/halting from taking ARV medication, through an evaluation carried out using the Focus Group Discussion (FGD) method and in-depth interviews with PLHIV in Yogyakarta City and Belu Regency, information was obtained about the reasons for PLWHA LFU due to (1) moving house, moving referral service and in the new place ARV services are not available; (2) Side effects in the form of discomfort with ARVs; (3) bored and lazy to take medicine; (4) Feeling healthy; (5) Unfinished self-acceptance, getting information from herbalists that causes them not to want to take ARVs, not being open to family, environment and fear of being discovered by partners.
Health Office: An Ever-Present Institution
The District/City Health Office (Dinkes) is the umbrella institution for the Community Health Centers and hospitals in their respective areas. The strategic role of the Health Office greatly determines the problem of LFU, because the Health Office also begins with the availability of reagents as materials for HIV and AIDS testing which are obtained from the central government, namely the Indonesian Ministry of Health and ARVs as the main medicines that PLWHA always have to consume.
LFU Data Validation FGD in Yogyakarta City
The Health Office also functions as an institution that provides instructions as well as coordinates the ongoing comprehensive services at the Puskesmas and hospitals. Things that support the termination of the LFU in Belu Regency are the support of BOK funds for promotive activities and VCT, the Village Fund Budget (ADD) for socialization activities, the existence of cross-sectoral support from villages, sub-district heads, religious leaders, traditional leaders, HR health workers who have high dedication, program integration with other issues such as P2M and KIA. Currently, Atambua Hospital is capable of providing ARV services, then the Health Office is preparing the private Marianum Halilulik Hospital and 4 other Community Health Centers as ARV service satellites.
Things that support the termination of the LFU in the City of Yogyakarta are, access to the Puskesmas is easier, 18 Puskesmas already have Continuing HIV-STI Comprehensive Services (LKB) and will be added to the Pratama hospital, DKT hospital, Jetis auxiliary health center and Mergangsan auxiliary health center. The HIV and AIDS program in the City of Yogyakarta is carried out cross-sectorally with several objectives, namely disappearing the stigma and discrimination against PLWHA, having open status for PLWHA and easy access to health services. Then there is the Special Allocation Fund (DAK) budget from the government for HIV and AIDS, for which there are already technical guidelines and implementation instructions.
Community Health Centers and Hospitals: Keepers Against LFU
Health services that play a very important role in providing LKB are Puskesmas and Hospitals, therefore the role and function of these health service institutions is very significant in maximizing efforts to break the LFU chain. The limited number of resources available at Puskesmas and Hospitals does not reduce their role in monitoring and collecting data on LFU cases. Various efforts continue to be improved to prevent LFU.
According to the Puskesmas, where the majority of PLHIV access ARVs, LFU is caused by many things, including: (1) The Covid-19 pandemic caused PLHIV to be afraid to go to the Puskesmas, the majority of PLHIV students and Café workers returned home and did not confirm with the Puskesmas and peer companions; (2) Changing services and accessing new services is no longer confirmed by the Puskesmas; (3) PLHIV do not believe the test results at the first service and do another test at the new service and access ARVs, while the LFU was originally calculated at the Puskesmas; (4) Do not believe in ARVs and do not want to access ARVs with the excuse that they have accessed them elsewhere (5) Feeling healthy, in stages I and II, then no longer accessing ARVs; (6) Side effects occur; (7) Think herbalists, believe that herbal medicines are enough, without having to take ARVs because they have many side effects.
To overcome this LFU, health centers and hospitals are making efforts that are considered effective, namely: (1) Re-administration of ARVs; (2) Treatment of co-morbidities; (3) ARV counseling; (4) FGDs with PLWHA and OHIDHA; (5) Education for families and their environment; (6) Regular meetings with peer supporters.
So far, the important roles that have been carried out by Puskesmas and Hospitals include: providing pre-ARV counseling, monitoring and evaluation after taking medication, collecting reporting data, and making referrals to peer supporters, Social Service, related Offices, Peer Support Group, and Residents Concerned about AIDS (locally known as WPA).
Health Service Discussion in Workshop on Optimizing the LKB System and Strategies for Minimizing LFU in Yogyakarta City
Peer Support Group – The Spearhead to Severing LFU
The Peer Support Group (also known locally as ‘KDS’) is the spearhead for PLWHA to strengthen one another, provide motivation and support, so that togetherness is built in an organizational container that functions as a place for a healthy life. Likewise, the roles of individual PLWHA are needed to motivate and provide encouragement for PLWHA who experience health problems.
According to the KDS, the reasons for PLWHA to return to taking ARVs were: (1) opportunistic infections appeared, decreased immune system, experienced serious illness; (2) Mindset, including: fear of death, being able to accept one’s own condition starting to have awareness of the benefits of taking ARVs as a step so that the body returns to health there is awareness to live a healthier life, being able to make peace with oneself; (3) a good support system: getting support from friends and fellow PLHIV, feeling accepted by family and those closest to them, motivation from family; (4) HIV and AIDS information obtained is quite comprehensive; (5) Medical Factors: replacing new drugs with low side effects.
There have been many successful experiences of KDS activists in motivating PLWHA to return to taking ARVs. The following is an explanation of the experiences of KDS in assisting PLWHA who are LFU. According to the DM from KDS Metacom, as peer companions they try to do outreach, but there are also PLWHA who are not willing to be referred, some really don’t want to seek treatment for reasons of side effects and exposure to herbal medicine issues. As KDS, DM helps members not to be LFU.
Another experience was told by YM from KDS Violet, according to her there was a friend of PLHIV who had a salon, YM provided education and accompanied her for 3 months taking ARVs, and until now the PLHIV continues to take ARVs even though it has not been open status for 4 years. The most significant thing according to YM was, he said, that YM was HIV positive and had been taking ARVs for 4 years, finally the one being accompanied wanted to take ARVs, “I set an example myself, this strategy is quite effective,” said YM.
Another success was mentioned by AR from KDS Metacom. His experience when he was a counselor for PLWHA, there were patients whose health was failing, then AR gave an example of himself, who used to be thin because of HIV, now he is fat. This PLWHA was motivated to take ARVs, and is currently in good health.
Similar to what EN and KDS Metacom told, because of the Covid-19 pandemic there are PLHIV who are afraid of services, and feel that they are still healthy without drinking, for 1 year they only drink herbs, then EN is advised to take ARVs, finally they want to take ARVs. The second story, according to EN, is that there is a PLWHA who has stopped taking ARVs for 4 months, then a TB opportunistic infection appears, finally they want to take ARVs again.
El from KDS Diajeng said he had educated PLWHA who had been LFU for 6 years, El had visited many times even though he was far away, El had also sent messages via WA many times. The key to the success of this repeated approach is through the method of sharing and in the end he relented, even though the PLWHA had previously avoided it. Initially because there were side effects, then El suggested taking ARVs again.
Another experience was also explained by Al from KDS Dimas, Al had experience assisting 50 people living with HIV who were LFU, and 25 people were returning to taking ARVs, Al provided motivation with his own experience having taken ARVs for 10 years, because before taking ARVs, Al’s health had dropped.
According to Et’s story from the Red Ribbon community, awareness arises not only from oneself, but also from accompaniment. With this assistance, PLWHA feel not alone, receive support and care. Et’s experience accompanying PLWHA whose immune system is weak, after being educated finally thinks positively that the benefits of ARV are many. Et explained that people who take ARVs for the first time must have side effects. After being accompanied, he became aware and empowered. Previously he was afraid to become fearless, and previously he was discriminated against in his family but he was able to prove to his family that PLWHA deserve happiness.
Af from Pita Merah said that there was a 20 year old PLHIV who wanted to take ARVs, but his family thought that his illness was being disturbed by spirits. Finally, this PLWHA stopped taking ARVs, then started drinking again, his family found out he had a TB opportunistic infection, then the family suggested stopping taking ARVs so that the TB would not get worse. There was also a 20-year-old patient who died as a result of intermittently taking ARVs and finally didn’t want to drink. Af’s experience was successful in assisting 10 people living with HIV who wanted to return to taking ARVs.
According to NV from KDS Violet, the most significant thing is giving PLHA a way out. For example, when an PLWHA moves out of town, he helps deliver medicine from the initial service that was accessed. There were also 4 people living with HIV who asked to be referred to a new place of residence and had access to medicine regularly.
NL from KDS Diajeng also said that educating was the main thing. If PLWHA stop taking ARVs, they can infect their partners and children. This way of thinking is enough to make PLWHA aware to return to taking ARVs.
Another thing was also said by BY from KDS Dimas, there are patients who are tired of taking medication for a year because of side effects. After BY conducted education, of the 5 people who had LFU, all of them had returned to taking ARVs.
DW from KDS Dimas said that there was 1 patient who had dropped out of ARV, it had been more than 1 year until his body was thin, and he had an understanding that taking medication could speed up death. Then DW asked him to access the service and he finally started taking ARVs again. One of the things that makes PLWHA want to take ARVs again is because they feel comfortable with us. We have to make them comfortable by building trust.
Still from KDS Dimas, AZ has experience of 2 people breaking up ARVs, namely husband and wife due to side effects. Her husband stopped taking ARVs for 1 year because he was tired of taking medication, and his wife for 6 months because she was pregnant and gave birth. The two PLWHA finally wanted to take ARVs again, AZ did this with an approach to convince them that even if there were side effects, if you keep taking the medicine your health will be better.
The ED from Pita Merah said that PLWHA experienced LFU because an opportunistic infection appeared, then received information that there was no need to take ARVs. Then the ED was educated that ARVs were important to minimize risk, and finally the PLWHA wanted to make peace with themselves by returning to taking ARVs.
According to the KDS Tasifeto Timur Belu Regency, the significant roles that have been carried out by the KDS so far are: Helping friends who have run out of ARV stocks by lending them to those concerned but the type of medicine must be the same, Reminding fellow PLWHA not to stop ARVs, Providing motivation to fellow PLHAs to do not be perforated to take medicine. Meanwhile for the Tasifeto Barat Belu Regency KDS, within the KDS a bond is formed in the form of forming a WA group to communicate with each other smoothly, reminding each other to stay on routine ART. A significant role also functions effectively in the Kakuluk Mesak Peer Group, Belu District, namely motivating by visiting PLWHA, educating about ARVs, and providing moral support that provides energy for PLWHA to live healthily and productively.
The presentation of the KDS’s experience accompanying PLWHA to return to ARV is a mentoring work that requires expertise. The SALT training and self-acceptance training conducted by UPKM/CD Bethesda YAKKUM Yogyakarta for PLWHA have provided self-confidence and effective skills for KDS in carrying out LFU companions for PLHIV.
KDS is a core axis in social movements based on the PLHIV community itself. The activeness of KDS in social movements has a very good impact on society in general, because being active in social movements shows that KDS and PLWHA are able to show their health existence is the same as society in general without stigma and discrimination.
Families and Residents Concerned about AIDS (WPA): Close People for Support
The FGD activities with peer groups in Belu Regency during the internal evaluation found several interesting things: the parties that most influence PLWHA in consuming ARVs are: themselves, partners (wife or husband), parents (father and mother), younger siblings, WPA, Peer Support Groups, and HIV managers from the Puskesmas. The reason is that these parties are present when the PLHIV’s condition is declining and always provide education about taking ARVs. Factors of personal and emotional closeness to family and neighbors (WPA) are important to strengthen PLWHA.
The roles and functions of the WPA to support PLHIV in the Belu area include: making approaches, motivating them to get ARV routine, visiting families, taking medication, providing information about the benefits of ARV and always monitoring for routine ARV. Meanwhile in the Yogyakarta City area, although not all WPA groups directly assist PLWHA, the focus of activities on HIV and AIDS issues is through promotive and preventive efforts. * (Hd).