Opinion: Lentera Anak Pelangi – Case Studies and Observations from an External Point of View

Opinion: Lentera Anak Pelangi – Case Studies and Observations from an External Point of View

anak hiv 1Having arrived in Jakarta for my internship with PPH Atma Jaya with little more than a bachelor degree and some travel as the sum of my expertise, I have been understandably overwhelmed by the scope and scale of the work done here. The logistics of navigating such an immense city, securing funding, and cultural contradictions are obstacles tackled daily and make implementation of even the most perfect policies seem almost insurmountable.

The research and capacity building side of PPH Atma Jaya is documented here quite extensively, so I will perhaps attempt to provide insight into the operational realities of Lentera Anak Pelangi – one of their partner programs. This is opinion based insight and is centred entirely on my external and limited experience in the field. This somewhat decreases the generalisability of my conclusions, but may depict a broad, overall picture nonetheless.

Lentera Anak Pelangi is a Jakarta based harm reduction program targeted at children born with HIV, aiming to improve the quality of life of these children and their families. The program is based on four main intervention strategies: basic health and nutrition, psychosocial and educational life skills, advocacy, and individual case management. I have been shadowing a case manager over the past few days in an attempt to understand the organisational hierarchy and the actualities of supporting children living with HIV.

The scale of Jakarta and the constant traffic make home visits an intensive process, often taking over two hours to reach a single child. Once there, there is little guarantee the child will be home and in some cases the family has moved entirely. Many of these children strive for survival in a world of poverty, extremely poor sanitation, and an endless cycle of drug use. It is the role of the case manager to monitor nutrition, familial care, and the advancement of the virus. Overall they provide a sense of support – both psychologically and through helping to ease navigation through the often complex health care system. The following case studies form a relatively accurate representation of the realities of HIV positive children living in poverty in Jakarta.

Case 1: Jane* has been with the program for 6 years and is 14 years old. Jane was born with HIV and orphaned at a young age. Jane lives in a small house in a relatively low SES neighbourhood with her grandmother. When Jane joined the program she had suffered extensive hair loss and open, infected wounds covered a significant proportion of her body. Treatment has vastly improved these issues, though some smaller skin infections are ongoing. Jane is aware of her HIV positive status, and has begun to avoid her medication. Whether this is due to a natural denial process or a fear of the real and significant side effects of ARVs remains unclear. Jane’s familial support network remains relatively strong.

Case 2: John* has been part of the program for around 4 years. He was born with HIV, and his mother succumbed to AIDS eight years ago. The whereabouts of his father have never been known and he currently lives with his elderly grandparents. The living conditions are highly unsanitary. John is 12 years old and weights 14kg. Other than vitamins, nil food supplements have been made available. He has now contracted Tuberculosis, is on constant oxygen for pulmonary disease, and has gone into heart failure. At last testing his CD4 count was below 120 cells/mm3. He is on a mixture of adult ARVs that result in indeterminate dosage, and as a consequence of his extensive comorbidities he is severely developmentally and physically disabled. Doctors have repeatedly recommended hospitalization, but the family has refused. The family is facing eviction as the government is rezoning the area.

Case 3: Jack* has been with the program for 3 years. He was born with HIV and orphaned as an infant. He lives with his grandmother in the absolute extremes of poverty; in an area characterised by darkness, stagnant water and animal faeces. His older sister currently supports them, though her situation, too, is tenuous. Itching as a side effect of the ARVs, a compromised immune system, and extreme unsanitary conditions have left jack with multiple, untreated open wounds. What appears to be Cytomegalovirus has caused blindness and severe necrosis in his left eye. His doctor has prescribed saline drops to prevent it spreading to the other eye… Jack has difficulty with balance and an unsteady gait, and his grandmother has the capacity for volatility.

Case 4: Sarah* is 6 years old and has been part of the program for several years. Her mother returned to Sumatra 5 months ago and she currently lives with her grandparents and her father, who is a continuing intravenous drug user. Living conditions are shared and relatively basic. Sarah has some skin problems, but no open wounds visible. A holistic skin cream, bought at an inflated price, is preferred by her grandmother. Sarah is unable to distinguish between bowel movements and urination, and consequently wears diapers for extended periods of time. She produces little intelligible speech, and her grandmother had difficulty explaining whether recent tests confirmed deafness or a neurological cause. Attribution to HIV was mentioned by the case worker. Sarah appears an energetic and boisterous child, and questions were raised as to whether her father has the ability to care for her long-term.

While a small glimpse into the program, these cases highlight the myriad of intertwining factors that children living with HIV must face. Many of these children are born to drug users, and as such it can be difficult to determine whether their developmental disabilities were caused in-utero, an effect of HIV/AIDS, or if they are more psychological in nature. If wrongly diagnosed, treatment becomes ineffectual. Poverty, too, is an absolutely overwhelming hurdle for the children, their families, and those attempting to assist. Their poor living conditions enhance the likelihood of infection, and the grandparents with whom most live lack the medical education to manage this. Travel to and from clinics is a financial and logistical burden, and can impact the employment of the caretaker – who is often elderly and has their own extensive medical history. If a parent is around it is common for them to be using drugs or working in the sex industry, a fact Lentera Anak Pelangi has little power to alter or control.

Programs such as this provide support to the child and the family, but do not yet have the capacity to tackle the system as a whole. Funding and education is desperately needed, as is a political and social admission of the realities of life. Mainstream public psyche continues to deny or morally condemn drug use and prostitution, and this broad misunderstanding leads to systemic social policy failure. These children are lost in the bureaucracy of an adult world, with private donors and programs such as this as their only support. These programs can absolutely change lives, but until funding and policy aligns with realistic needs we are barely mitigating the symptoms of a growing endemic.

In such a vast, contradictory city facing such a multitude of economic, cultural, and infrastructural challenges, the needs of the neediest are so easily overlooked. The staff and partners of Lentera Anak Pelangi dedicate their lives to what is an immense and psychologically distressing task, yet regardless of the scope of work still faced, the importance of striving to improve individual lives cannot be overstated. Programs such as these have infinite and available operational and practical knowledge, and this can and must be utilised in the formation of health policy if we are to see positive progress. (chevaun buchecker)

*Names changed to protect anonymity