HIV patients in Indonesia have been forced to adjust their daily medication routine because of problems with the government's medication procurement programme.
They are now taking single-dose medication twice a day for their antiretroviral (ARV) therapy regime, as the country is facing a scarcity of the fixed-dose combination medication in one tablet that only needs to be taken once a day.
The ordeal began when a tender from the health ministry to procure the drugs in 2018 failed twice because of disagreements over pricing, according to Indonesia Aids Coalition (IAC), a nongovernmental organisatation.
The limited tender process, which only involved two state-owned pharmaceutical companies, became deadlocked, and as a result the available supplies in inventory ran out last year.
Selvin Pancarina, an HIV Aids activist based in Surabaya, East Java, told Asia Focus she had to switch to the single-dose medication two months ago after using the fixed-dose combination ARV medication that contains tenofovir, lamivudine and efavirenz (FDC TLE) since 2012.
Even though supplies of the single-dose drugs remain steady and she continues the medication, she admitted that it has not been easy to switch her routine after six years taking medication just once a day before she goes to bed.
"I have to be more disciplined with the new regime, by taking them in the afternoons and the evenings," she said. "Sometimes I forget to take the afternoon medication, not to mention that each drug is said to have side effects if taken separately and there are contraindications for certain foods, so we have to be stricter in our diet and really pay attention to what we eat before we take the drugs.
"One of the drugs we take separately is said to cause a side effect on the kidneys if we don't take it with a lot of water. So we keep wondering if the water we are drinking with the drugs is ever enough."
Selvin said members of her organisation, Ikatan Perempuan Positif Indonesia (IPPI) or Association of Positive Women Indonesia, had also experienced discomfort and irregularities in their daily routines after switching from fixed-dose combinations to single-dose medications.
"The effect of single-dose medication is different in every patient. Some really have a hard time adjusting, some even experience hallucinations or insomnia. They can't sleep well at night and it causes them to feel dizzy and exhausted the next day," she said.
The ARV medication is fully subsidised by the government and available to HIV patients at 895 distribution points such as hospitals and healthcare centres in all 34 provinces. In 2017, the government allocated about 800 billion rupiah (US$56 million) for the medication.
Aditya Wardhana, the IAC executive director, told Asia Focus that changing medication to single doses poses risks that some of the drugs may not be available at the same time for every patient. As well, there are some patients who can take only two drugs instead of all three, resulting in sub-optimal treatment.
He added that although the fixed-dose combination drugs are still available, they are now in very limited supply which constitutes an "emergency".
"The safe benchmark to ensure drug availability is for there to be enough supply for at least six months at the national and regional levels," he said. "Now, it's only available for less than one month at the national level and three months at the regional level."
Even though a tender for drug procurement is finally being processed, it will be a while before the drugs are available again, he added. "If the process goes well and there no glitches, we can have the stocks back to normal by June."
The health ministry has reassured patients that ARV medication supplies will be available in adequate quantities for the rest of the year.
"The procurement tender for next year's supply of fixed-dose combination medication is being processed," ministry spokeswoman Widyawati told Asia Focus.
The ministry's pharmaceutical and medical devices director general, Engko Sosialine Magdalene, said the availability of ARV supply has taken into account the average growth in the number of patients by about 1-3% per month.
She also said the ministry had taken steps to ensure the drugs are available by receiving a grant to import 222,000 bottles of fixed-dose ARV medication in December last year from the Global Fund, a financing group that fights Aids, tuberculosis and malaria. Each bottle contains 30 tablets.
"These 222,000 bottles are enough to meet patients' needs for the next five to six months," she said, adding that the ministry had also prepared 564,000 bottles of ARV medication by the end of 2019 and that the government continues to provide and allocate spending to procure ARV medication.
The first HIV Aids case in Indonesia was found in Bali in 1987. According to health ministry data, the number of HIV patients in the country as of October 2018 was 305,000, and 107,000 of them were on medication.
According to UNAids, the key populations in Indonesia that are most affected by HIV are sex workers, with an HIV prevalence of 5.3%, men who have sex with men, with a prevalence of 25.8%, people who inject drugs (28.76%), transgender people (24.8%) and prisoners (2.6%). New HIV infections have decreased by 22% and Aids-related deaths have increased by 68% since 2010.
Mr Wardhana of IAC said that without the ARV medication, it would be hard for HIV patients to maintain their stamina at the same level as non-HIV people.
"Their health condition can deteriorate. About 95% of people with HIV Aids died because they failed to take the medication," he said. "By taking the medication regularly, HIV patients can live normally and have the same life expectancy as the non-HIV people."