It was almost midday in October last year, we arrived in front of the house of Eka, a child living with HIV. Tears burst from Eka’s mother as soon as I hugged her. It was challenging for me, as Eka was one of the first children enrolled with Lentera Anak Pelangi (LAP), a program providing care and support to children living with HIV in Jakarta.
In 2017, doctors diagnosed Eka with cerebral toxoplasmosis, the most common central nervous system infection among people living with HIV. The infection continued to cause her immune system to deteriorate, resulting in severe headaches and loss of sight.
Eka apologized to her mother for not taking all her antiretroviral (ARV) medication. She never took one of the three combination drugs as it is as large as an adult thumb. Eka’s mother tried to persuade her by cutting the tablet into pieces. However, it made the bitter taste worse. Eka, secretly, only swallowed the other two tablets and kept the other one in her bag.
Eka made a promise she would take her medicines again. She wanted to live. She had even asked her doctor to provide an easier drug formulation. However, this was all too late. Eka never received the proper pediatric formulation, despite its availability in Indonesia. After fighting for two years, on a Sunday afternoon, Eka took her final rest.
Other children living with HIV share Eka's experience. They struggle to survive and their immune system continues to weaken. In most cases, this is due to the challenge in consuming the adult form of ARV medication that results in low adherence.
Although ARV medication does not kill HIV, evidence shows that if consumed appropriately every day, it can lead to viral suppression and an improved quality of life. ARV treatment is a life-saving combination of medicines for people living with HIV, including children. Among adults, adherence may be affected by the fatigue of taking the same medicines over time, as well as the side effects that may come with the drug. Children, too, experience the same thing. However, many children are unaware of their HIV status, including the benefits of the medications they consume.
Based on the 2020 first quarterly report from the Health Ministry, there are 388,724 people living with HIV in Indonesia, 3.3 percent of them are children aged 0-14 years old. According to the Constitution, the state is obliged to guarantee all citizens access to health care as a human right, and health is a fundamental right for everyone, including children living with HIV. Unfortunately, pediatric-specific ARV formulations are very limited.
LAP has found that only two pediatric ARV formulations are available, a fixed-dose combination (FDC) tablet and a pediatric formulation. The latter has only been available in Indonesia since 2019, and it has not been distributed evenly. This forces children to take an adult formulation, often by cutting or crushing the tablet. In fact, doctors often leave this to the parents or caretakers. This may include different doses such as 1/2 tablet, 1/3 tablet, 0.6 mg, and many others.
It is crucial to take the appropriate dose of ARV medication, otherwise treatment may be ineffective. Almost all adult ARV drugs come in tablet, caplet or film-coated tablet without a score line to split. Film-coated tablets are designed to reduce the bitter taste as well as to protect the tablet from dissolving too quickly. Dissolving crushed ARVs into water also often leaves some undispersed. Additionally, air can degrade the exposed drug, reducing its effectiveness.
The number of children living with HIV in Indonesia is relatively low. The Health Ministry always argues that the current regulation on large-purchases of commodities prevents small-purchases of high-cost commodities.
Pediatric ARV formulations are frequently advocated for. However, regulations and bureaucracy remain barriers. Furthermore, the Health Ministry issued a new narrative on simplifying ARV regimens, including for children. It includes removal of some ARV combinations, leaving children with fewer options.
Later in June, a circular letter was published. It includes a recommendation to replace the current fixed-dose combination available for children with a multi-pill. Following this, an expert panel on HIV and STI published a set of recommendations in line with the national standard medical procedures on HIV implementation 2019 (PNPK HIV 2019). However, the concern is that these changes may affect children psychologically and their adherence to ARV medication.
The fight to make pediatric ARV treatment available has not been successful. Just a few days ago some children told me they were happy with their dispersible medication. But today, a grandmother returned from a hospital with three different bottles of ARV medication. “The hospital did not have any stock of the usual form, so they gave us a multi-pill combination,” said a grandmother. She is worried that her grandchild will not be able to consume the ARV as he usually received a dispersible form.
Ironically, more fixed-dose combinations have been made available to adults, as it is known to increase adherence. I am jealous of the inequality. I may be overreacting by thinking the worst. At the end of the day, it is the WHO that published the guidelines, and the expert panels have made the recommendations based on evidence.
We hope the Health Ministry will fulfill the right to health of children living with HIV. We hope that strategic and progressive steps will be taken to fully implement the 2016 consolidated guidelines on ARV of the WHO, PNPK HIV 2019, and the recommendations from the expert panel.
This is a long note for us. It is time to talk about pediatric HIV treatment, not as an “any other business” agenda, but as the main agenda. For us, one child is one life, and each life matters. Happy National Children’s Day!
The writer is the advocacy manager at Lentera Anak Pelangi.
Disclaimer: The opinions expressed in this article are those of the author and do not reflect the official stance of The Jakarta Post.