In Ubud, and Gianyar regency as a whole there are some 30 ‘kafés’ (illegal night time café/bar/brothels) and more than 200 ‘unofficial’ sex workers. The men who frequent these ‘kafes’ and get infected with HIV, go home and infect their wives or girlfriends . The cases we have found in Ubud, as opposed to the pattern in Kuta, have been those of infected women and children.
interview with Lily Wardoyo, Chairperson of Yayasan Bali Peduli (YBP), a foundation for the prevention, detection, and treatment of HIV
by Rio Helmi
Rio Helmi: When did the Bali Peduli foundation officially begin to operate? Who were the founders?
Lily Wardoyo: Bali Peduli was officially recognized by the Ministry of Justice and Human Rights in 2013, almost 2 years after we applied. But Bali Peduli’s first clinic – Klinik Bali Medika in Kuta – has been operational since 2011. Bali Peduli was established by a group of Bali residents led by Dr Steve Wignall, a leading HIV and AIDS expert, researcher and activist with 25 years of experience in Indonesia. Dr. Steve is National Advisor to the national commission on AIDS (KPAN), as well as Senior Medical Advisor to the Clinton Foundation in the Province of Papua.
RH: It seems pretty clear that all the founders of Bali Peduli had similar humanitarian motivations, but what was the final thing that pushed the founders to actually take action?
LW: The initial trigger was the high levels of HIV related deaths amongst young men in Bali. As a doctor working in the field of HIV and AIDS, Dr Steve frequently received requests for help and opinion from patients who were having difficulty accessing medical care because they were suspected to be HIV positive. Often they received attention too late, or not at all, so they couldn’t be helped. Most of these cases were young men between the ages of 20-30 years old. The prevalence of these cases triggered the founders to act. Our mission: overcome obstacles to access for treatment and prevention of HIV in Bali through free testing and treatment, outreach and education, as well as support for People Living with HIV/Aids (PLHAs ).
RH: In the beginning your activities were centered in the Kuta/Legian/Seminyak area. What made Bali Peduli extend its activities to Ubud? Does Ubud have the same level of risk as in Seminyak and environs? Ubud doesn’t exactly have the same level of wild nightlife as those areas. Or is it a misconception to think that the nightlife scene is the primary environment for the spread of HIV?
LW: A large part of the Bali Peduli founders and activists live in Ubud, so starting up activities in the Gianyar area and contributing to our place of residence is a natural step to take. The Bali Peduli clinic – Klinik Anggrek in the PUSKESMAS II (community health centre) in Sayan – has been operational since June 2013.
If we talk about risk and wild nightlife, the main risk in the spread and biggest obstacle in prevention of HIV/AIDS is the lack of knowledge and the stigmatization – this even amongst medical practitioners! Nightlife only becomes risky when people don’t understand how HIV is contracted and how important safe sex is.
If we talk specifically about Ubud, in Gianyar regency there are about 30 kafes (illegal night time café/bar/brothels) and more than 200 ‘unofficial’ sex workers. It’s a fact that the clientele of the kafes often refuse to use condoms, and the sex providers feel un-empowered to force their clientele to use them. The problem is the men who frequent these kafes then go home and infect their wives or girlfriends with STDs or HIV. The cases we have found in Ubud, as opposed to the pattern in Kuta, have been those of infected women and children.
RH: Other than providing free and rapid testing, just what activities does Bali Peduli carry out in Ubud? What kind of prevention are you emphasizing in the light of the specific risks in the Ubud area?
LW: One of the most important pillars for the success of the treatment and prevention of HIV/AIDS is cheap, comprehensive, easily accessible, efficient, quality, and non-discriminative medical service. The treatment and prevention of HIV can only be successful if the treatment and prevention STDs is effective; the two are perforce connected. The PUSKESMAS community centres – the main medical care providers for most of the community – provide medical care for a large number of patients and sexual and reproductive health services are only a small part of their work. The lack of time and privacy (as a result of the daily patient versus medical practitioner ratio), and in several cases the lack of knowledge and capability of the practitioners, results in sub-optimal service and limited access to high risk groups or even those already infected with STDs or HIV. Sub-optimal quality of health care frustrates patients, and being unsatisfied they drop out of programs in a short time. The problem is they continue to infect others or drop out of follow up programs and die early. With these issues in mind Bali Peduli provides the following:
- Free early testing and treatment. Patients get their results in one hour, so they don’t have come back again.
- Counseling about reproductive health and HIV and AIDS
- Support for PLHAs
RH: Education and knowledge have become your focus. What kind of programs have you implemented, and are you planning any increase in your activities here? What is your ideal target? Are you working in cooperation with the government?
LW: Education and public information campaigns are a key part of Bali Peduli’s activities. Bali Peduli’s Outreach Team does public information campaigns in various banjars (hamlet level communities), village women’s associations, youth associations, schools, companies, and prisons. These public information campaigns are done in an interactive fashion, and judging from the number of questions asked during these activities, it’s clear that communities, especially the youth, are thirsty for information about sexual and reproductive health.
What Bali Peduli has achieved in Ubud and Gianyar as a whole in eighteen months is only a fraction of our plans. All of it is dependent on the availability of funding. Our ideal target? That the correct information and understanding about HIV spreads throughout the community: for example that HIV doesn’t spread through handshakes with PLHAs, sitting together with them, eating together with them, sleeping with them, or using the same toilet. HIV isn’t a fatal disease but a chronic condition like high blood pressure or diabetes that can be kept under control by being disciplined about medication. That with a healthy lifestyle PLHA can live a long and productive life.
Cooperation with the government isn’t limited to public information campaigns, but also, even more importantly, the provision of Antiretroviral medication (ARV) and various reagents for testing, condoms and lubricants.
Just recently Bali Peduli was invited to give a explanatory talk at the kecamatan government district office where the district chief’s wife spontaneously volunteered for an HIV test, setting an excellent example for a government official’s wife.
Our cooperation with the government is also extends to the PUSKESMAS II in Ubud where the Klinik Anggrek operates. The PUSKESMAS provides premises, electricity and water. The PUSKESMAS also refers pregnant mothers and families to the clinic.
Bali Peduli works together with the Bali Provincial Government Health Services of Bali and the Gianyar Regency Health Services, to run training courses for health practitioners to learn how to treat HIV positive patients.
Teenagers from Penestanan during education and public information sessions
RH: We’ve heard that Bali Peduli also gives economic support to certain clients. What’s required for eligibility for this program? How is the support actually given; is it direct financial contribution?
LW: The Positive Living Fund wasn’t actually part of the initial plans of Bali Peduli. The program came about because after a short time operating in Ubud, we came across a case of a mother and child who were HIV positive who were thrown out of their home after their husband died of a disease connected with HIV. They were sleeping under a table in the Kintamani market because the mother’s own family refused to take them back. At the time there was no budget for such cases, so a group of us chipped in money to buy some staple goods and to rent a temporary place for them to stay. In the end we had to hospitalize the child but couldn’t save the child. In order to avoid dependency the Positive Living Fund doesn’t give direct contribution in the form of money. This program is designed to be a temporary support in order to give those who need it a chance to get back on their own feet. Our Outreach team goes directly on location and gives recommendations based on their observation; they also deliver the support directly and also give regular evaluation. This program is only for women and children who are HIV positive, and is limited to a 3-6 month period in each case. Bali Peduli works with other NGOs in order to raise the funds for children who have left school to re-enrol. For the time being this program is limited to the Gianyar Regency.
RH: In general, what are the main obstacles to Bali Peduli’s activities? For example, does Bali Peduli experience any resistance from certain levels of society, or are their difficulties in accessing certain sectors of society because of local social structure?
LW: As is the case with NGOs in general, the main obstacle is in funding. Maybe because HIV is not “sexy” enough, a little scary for some, or uncomfortable to discuss. Most social resistance stems from ignorance and it does make it difficult for us, because a deep stigmatization makes discussing sexual matters and reproductive health anathema for certain layers of society. The stigmatization also makes people think that STDs and HIV are conditions that are specific to people with loose morals even though it’s a well documented fact that most cases occur where men infect their girlfriends or wives, and through them the babies – in truth they are all victims of ignorance. This is something that shouldn’t happen and is easy to prevent!
RH: Can you give an example of the most heartbreaking type of case? And what makes it so poignant?
LW: The example I talked about earlier, mainly because we couldn’t save the child. It’s impossible to forget and so difficult to accept. We know that these situations arise as a result of stigmatization or some kind of economic excuse, but in this case the family even refused to lend the mother their family ID card so they could get public health insurance for the hospital. Although another NGO finally gave them financial assistance and the insurance could be accessed in the end, things like this make one angry and sad.
RH: An example of a case that really brings your spirit and hopes up? And why does it give you enthusiasm?
LW: There are many things that give us heart. The increasing number of people who are coming to get tested; cooperation with the government though slow in coming but points to progress; a dedicated and hardworking team; appreciation from patients in the form of voluntary donations; good cooperation with other NGOs (we believe that the HIV situation in Bali can’t be solved alone but has to be done in tandem with others); the increased interest amongst businesses and their owners in participating; and the participation of community members in the form of volunteer work.
RH: Bali Peduli is a non-profit organization. Where does it get its funding? Do you have to continue to raise funds or do you already have a permanent donor?
LW: A permanent donor is our dream. Bali Peduli has been blessed to receive the support of various parties. In Ubud our activities were made possible with the help of a Global Grant from the Ubud Sunset Rotary Club (that funding has now expired) and The Mel Wolf Foundations donations for some of the Outreach programs. Various private donors have made it possible for us to open our clinic in Kuta and to operate in Gianyar. Through Dr. Steve’s network, the main equipment used for HIV testing was donated by the manufacturer in the USA. The problem is the uncertainty of continued funding. Fund raising is a constant, ongoing concern.
RH: If someone wanted to donate or to be a volunteer, what would be the best way?
LW: For donations, whatever the amount, you can transfer directly to the account on our Yayasan Bali Peduli website, and inform us by email so we can make an official receipt. Or you can get in touch with us at email@example.com for more information. To do volunteer work please contact the same email or firstname.lastname@example.org.
Bali Peduli Activity Statistic
Education Sessions (total): 79
Participants in Education Sessions (total): 3,695
|Patients Tested For HIV||48||403|
|Patients Tested HIV+||8||39|
|Pregnant Women Tested For HIV||5||524|
|Pregnant Women Tested HIV+||0||2|
all photos courtesy Yayasan Bali Peduli