Commitment |

A Message of Hope for Children Living with HIV

Commitment | 18 March 2018

According to UNAIDS, Indonesia had 48,000 new HIV infections and 38,000 AIDS-related deaths in 2016. In the same year, there were 620,000 people living with HIV. Among pregnant women living with HIV, 14% were accessing treatment or prophylaxis to prevent transmission of HIV to their children. An estimated 3200 children were newly infected with HIV due to mother-to-child transmission.

Lentera Anak Pelangi (LAP), a community service under the AIDS Research Centre of Atma Jaya Catholic University in Jakarta runs the program to support  children living with HIV. Photo courtesy of Lentera Anak Pelangi/NOW!JAKARTA

Lentera Anak Pelangi (LAP), a community service under the AIDS Research Centre of Atma Jaya Catholic University in Jakarta, care for and support children living with HIV in Jakarta and the Greater Jakarta Area. LAP was established in response to the omission of HIV and AIDS harm reduction and prevention programmes specifically targeted at children in and around the capital.

NOW! Jakarta spoke to Nita Anggriawan, the Programme Director of LAP, about the many challenges that children with HIV in Indonesia still face, and what can be done in terms of prevention.

Please give us more background information about the establishment of Lentera Anak Pelangi.
Since its establishment in 2009, LAP operated through the support of different organizations and donors. First, we were funded by the United Nations Development Program (UNDP) grant through the Indonesia Partnership Fund (IPF) in cooperation with the National AIDS Commission (KPAN). LPA was born in the academic community of Atma Jaya Catholic University in the hope of becoming a laboratory for students and lecturers to apply knowledge relevant to the needs of children affected by HIV and AIDS and their families. To help families of children infected and affected by HIV and AIDS through family empowerment, LAP was placed under the Community Empowerment Center (PPM).

Within one year, LAP cared for 88 family units with 121 affected children, 26 of whom were infected with HIV. A Drop-in Center in Cempaka Putih was established, where the children and their families can get health and psycho-social clinical services.  

In 2010, the funding from IPF-UNDP and KPAN only lasted for one year. After that, LAP tried to find another funding alternative through individual donors and had to cut down its staff. With the remaining funding from IPF-UNDP, LAP could still survive with donations from individual sponsors.

In mid-2011, LAP was no longer under the Community Empowerment Center, and we moved to the Atma Jaya HIV Research Center (PPH). At the same time, Rotary Club of Jakarta Sentral began to fund us. Additional funding support came from Werk Group'72 for CD4, VL, and other laboratories. Some private donors from both Jakarta and outside Jakarta (Solo and Surabaya) also contributed to support LAP activities such as free monthly medical checks. The Rotary Club of Jakarta Sentral Central ended its funding in April 2014.

Since 2014 until now, most of the LAP funds come from private group donations. In 2015, along with the inclusion of child issues in the Strategy of the National Action Plan for AIDS Prevention in 2015-2019, we hoped that there will be a budget from the government and international donors to support programmes for children with HIV in Indonesia. However, until now the support programmes for children is still attached to the support of programmes for mothers and women.

LAP itself is committed to take care of around 80 children, who are up until 12 years old, but some of them are already older - our oldest beneficiary is now 17 - and we keep accompanying them and offer different kinds of services. In total, we take care of 100 children.

What is your vision and mission?
Our vision is to be the leading multi-disciplinary provider that improves the quality of lives of children with HIV in Indonesia. We care for and educate the children and their parents or caregivers, so that these children can one day care for themselves independently and have life skills to earn a living.

Our mission is to reduce the morbidity and mortality of children with HIV by improving their health and nutritional status, to improve the psycho-social well-being and self-sufficiency of children and families through life-skills education, to prevent children from being neglected or maltreated and to develop an intervention model in mitigating the impacts of HIV and AIDS on children and their families while setting the standard of care nationwide.

Photo courtesy of Lentera Anak Pelangi/NOW!JAKARTA
Photo courtesy of Lentera Anak Pelangi/NOW!JAKARTA

What kind of services do you provide at LAP?
Firstly, we do home visits and provide nutritional support: basic health and nutrition assessment, which means medical care and treatment, food and nutrition support, psychological care and hygiene-sanitation education. We do nutrition assessments, and distribute milk, vitamins and other supplementary food.   

Secondly, there is our ambulatory and medical support, which includes support for the children in the hospital as well as regular free medical check-ups.

Thirdly, it is important to also provide psycho-social support and life-skills education, for both the children and their parents, including character building, thematic education and counseling as well as grief counseling.

Another focus is on capacity building, including case management training, counseling, advances and the management of HIV and AIDS as well as vocational training for teenagers.

Lastly, there is advocacy – building awareness and dealing with stigma and discrimination in families, schools and the community.

What is the main cause for children to be infected with HIV? What kinds of treatments are available, and what are their chances of survival?
100% of the children we care for are prenatally infected, mostly because their mothers didn't know about their own condition and therefore couldn’t access the prevention programme.

The available treatment is anti-retro viral therapy. The children can access it from the hospital for free because of the government support. They have the same chances of survival as other children if they get the proper support for their nutrition, medication as well as love from their families and environment.

What are the biggest challenges you face?
Since the number of children with HIV is smaller than the number of infected adults, the government does not prioritize HIV children in its national programme for HIV yet. There is no special budget for HIV children programmes in Indonesia, so we have to find donors ourselves.

Besides that, the availability of pediatric anti-retro viral (ARV) is limited. Not every region in Indonesia provides pediatric ARV, so the caregivers face the difficulty of giving the adult's form-medicine to children. And then, of course, there is the stigma and discrimination from the community they have to face, be it in their home environment, at school or health care centers.

Speaking about the stigma and discrimination, what do you think needs to be done to tackle this problem?
60% of the discrimination faced by our kids happens in school. Last year, we approached the Jakarta Provincial Education Department to take action in advocacy for HIV children. We use the Kartu Jakarta Pintar or KJP (Jakarta Smart Card) to remind the schools that KJP support can be revoked if the kids are involved in any case of bullying or discrimination, or the accreditation of the school could be re-evaluated in such cases.

By educating others through campaigns in schools and public spaces, and also through social media, we believe that we can spread a positive message and play a big part on reducing the stigma and discrimination. We think that the government also has to support our effort to reduce the stigma and discrimination by ensuring that children’s rights are implemented, no matter in what situation and condition they are.

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This article is originally from paper. Read NOW!Jakarta Magazine March 2018 issue “Design for Living”. Available at selected bookstore or SUBSCRIBE here.