A Lifetime Tethered to the Machine: Dialysis Patients Left in Limbo by Insurance Deactivation

“I thought it was just exhaustion.”

Indah — not her real name — a 24-year-old woman, still vividly remembers that thought. She lives in Jakarta, in a small terraced house shared with her mother, an older sibling, a younger sibling, and herself.

Her family’s income is tight — enough for daily meals if everyone works, but precarious if even one person falls ill. That person turned out to be her.

In early 2025, after months of nausea, swollen feet, and extreme fatigue, a doctor diagnosed her with kidney failure. She went home in turmoil.

“I was down. I felt like my life was over — I even thought about not wanting to go on living,” Indah told detikX.

Before falling ill, Indah worked multiple jobs. Mornings as a barista at a small café, afternoons tutoring primary school children, evenings freelance translating documents. She said she dreamt of office work — neat, wearing a lanyard ID card, sitting at a computer.

“I really wanted to be an office worker,” she said.

But after the kidney failure diagnosis, that dream felt impossibly distant. Since March 2025, she has undergone dialysis twice a week, on Mondays and Thursdays. Each session lasts five hours, not counting the queue.

Dialysis days begin at four in the morning. She must leave before sunrise to secure a slot. Waiting can take two to three hours. Then she enters the haemodialysis room — five hours lying down, needles in her arm.

She rarely gets home before midday. The round trip can take over two hours, depending on traffic. Her body is usually weak afterwards. Sometimes dizzy and nauseous.

For the first year, she paid out of pocket. A single session costs approximately Rp 1 million to Rp 1.5 million, not including supplementary medication and routine blood tests. Twice a week. The monthly figure was inconceivable for her family.

Savings ran out, and freelance work was not always available. Her older sibling works on contract, the younger one is still studying whilst working part-time, and her mother runs a small trade. Eventually, Indah was registered as a BPJS PBI (Contribution Assistance Recipient) member.

She felt relieved at the time — before the problems that have recently surfaced. Her status was suddenly deactivated when she arrived for treatment. Indah had already reached the hospital, had queued since dawn. Staff told her that her PBI membership had been “suspended” and needed to be verified at the BPJS office and social services department.

“It was a mix of emotions. I was also scared I wouldn’t be able to get dialysis that day,” she said.

Several suggestions were offered to restore her BPJS status, but all required time. Meanwhile, dialysis schedules cannot be postponed for long. She borrowed money as a precaution in case she had to pay independently.

“If it’s delayed, toxins accumulate. Your body feels incredibly heavy,” she said.

The problem extends beyond treatment costs. Each hospital visit requires a family member to accompany her. This means her older sibling must take leave from work or her younger sibling must miss university. Transport costs, meals out, parking — it all adds up.

A single trip can cost Rp 50,000 to Rp 100,000 for transport and a simple meal. Twice a week. Over a month, that becomes a significant burden.

Despite everything, Indah still harbours a simple wish to hold down steady employment given her current condition. Seeing other kidney failure patients who manage to work normally, she believes she can do the same.

“But you can’t deny you need a support system — from family obviously, from your environment, perhaps even from the government. For instance, don’t make medical treatment such a hassle,” Indah concluded.

Indah is not alone. Dewi Umiliana, a 44-year-old woman, has a similar story. She is always haunted by the words of her six-year-old youngest child, who clings to her tightly whenever she looks pale or vomits after haemodialysis.

“‘Mama, don’t die. Mama, don’t leave me.’ Whenever I collapse, he’s always the first to say that. It cuts my heart to pieces,” Dewi told detikX.

She has been on dialysis for nearly two years. Since late April 2024, twice a week, Mondays and Thursdays. She goes to the University of Indonesia Hospital (RS UI) in Depok for haemodialysis. Each session runs from 1:00 PM to around 7:00 PM. “We depend on that machine. Because our kidneys are in that HD machine,” she said softly.

Dewi lives in Citayam, Depok. Before her condition worsened, she had a history of type 2 diabetes, which she had suffered from for nearly eight years. Initially, she had regular check-ups at Citra Arafiq Hospital in Kelapa Dua.

The symptom she remembers most is the swelling. “Feet, face — my entire body, right up to the heart and lungs. The fluid got in there,” she said.

The swelling would not subside. She went back and forth to the emergency department, was hospitalised several times, but her condition did not improve. Eventually she was referred to RS UI in 2024. There she was diagnosed with kidney failure and had to undergo surgery to create access for haemodialysis. The next day, she began HD immediately.

Initially, the fluid in her body was so excessive that her weight reached 72 kilogrammes. “Now, thank God, it’s 57 kilogrammes. The fluid has dried up,” she said.

Nevertheless, she knows this treatment cannot be stopped. “Miss one dialysis session and fluid accumulates, toxins accumulate. Walking just a few hundred metres leaves you gasping,” she said.

For several months, treatment was covered by BPJS Kesehatan through her husband’s former employment at a Telkom tower. After her husband lost his job in early 2024, that coverage ended in November 2024. Dewi was then registered as a BPJS PBI member.

There were no significant problems — until 2 February. That afternoon, she arrived as usual for her dialysis appointment. She had reached the HD room, was already lying on the bed with a blood pressure monitor attached. The blood tubing just needed to be connected.

“Suddenly the nurse said, ‘Mrs Dewi, don’t connect it yet because your BPJS is inactive.’ I was shocked,” she said.

That day, according to her, many PBI patients could not be processed either. “Even the customer service staff were shocked,” she said.

She ultimately went home without receiving dialysis. “Honestly, I’m hurt by the government. Without coordination, without any prior notification, it was just suddenly deactivated,” she protested.

For kidney failure patients, even a single delay can mean serious risk. She mentioned seeing another patient who missed two dialysis sessions and whose condition deteriorated.

“Without the machine, our lives could just stop,” she said.

Since then, every scheduled dialysis session has become a moment of uncertainty. She and her husband have been going back and forth to the community health centre and sub-district office to arrange social assistance so she can continue HD. Several times her status was “suspended” in the Health Department’s system. On one occasion, she was asked to sign a stamped declaration stating that if approval was not granted, she would have to bear the costs herself.

“Every dialysis session is nerve-wracking. Will it work? Will it work?” she said.

Cost is no small matter for her family. Her husband now works odd jobs as a ride-hailing driver, taking turns with their 19-year-old eldest child.

Daily income is uncertain — sometimes Rp 70,000, sometimes Rp 100,000. Meanwhile, a single dialysis session, if paid at the general rate, can cost approximately Rp 1.5 million.

Beyond that, there are other expenses — stomach medication, blood pressure medication, haemoglobin-boosting injections at Rp 175,000 per shot, and school fees for her youngest child, which were two months in arrears.

“If you ask whether it’s enough — no, it’s not. But we make do,” she said.

Amidst all this, she admitted to feeling like a burden on her family. “I’ve broken down before. I felt like my illness was a burden on my husband,” she said.

But her husband always strengthened her. What keeps her going now are her children, especially the youngest, who always asks her to stay alive.

On the policy of PBI deactivation she experienced, her voice turned firm. “Please look at your people before taking action like this. If you’re going to deactivate it, give us advance notice so we can prepare. Don’t cut it off right in the middle of treatment,” Dewi said.

Dewi knows her life is now bound to schedules and machines. But as long as she can still go home, still be embraced by her child, she chooses to keep going.

“If I can still walk, still breathe — I’m already grateful.”

The chairman of the Indonesian Dialysis Patients Community (KPCDI), Tony Robert, said that in his community, approximately 200 people reported being affected by PBI deactivation. However, for Tony, the numbers are not the core issue.

“Even one person rejected by the state system is a serious matter,” Tony told detikX.

The impact extends to financial and psychological dimensions. Some patients suddenly had to pay out of pocket, take on debt, or even sell livestock to afford a single session. Others ultimately stopped therapy because they could not afford it.

Panic sets in every time a dialysis appointment approaches — fear of being turned away at the counter, fear that their status is still inactive, fear of going home without treatment.

Without insurance coverage, the cost of a single dialysis session ranges from Rp 1 million to Rp 1.8 million, and can reach Rp 2 million to Rp 2.7 million at some private hospitals in Jakarta. At a frequency of two to three times per week, this burden is virtually impossible for most patients to bear alone.

This is why, when PBI membership is disrupted or deactivated, the impact goes beyond mere administrative inconvenience. Tony described the situation as a humanitarian tragedy.

“Dialysis cannot be postponed. This is life-sustaining therapy, not elective therapy.”

Responding to the PBI deactivation issue experienced by a number of patients, the Chair of the Nephrology Coordinating Working Unit at the Indonesian Paediatric Association (IDAI), Dr Eka Laksmi H, SpA, Subsp Nefro(K), assessed that re-verification of data could in principle be carried out to improve targeting accuracy.

However, she said the process must not compromise the safety of patients undergoing routine therapy such as haemodialysis.

She emphasised the importance of socialisation before the policy is implemented so that patients have time to anticipate changes and seek alternative funding if necessary.

“The concern is that there are data changes and so forth, but it needs to be socialised before it is carried out, because it is very dangerous and very harmful if members who are terminated are not informed beforehand,” she said.

In line with the statements from Tony and Eka regarding the importance of continuity of care for dialysis patients, the government has also highlighted the increasing demand for renal replacement therapy as a challenge for the health system.

To reduce congestion and queues for haemodialysis services at hospitals, continuous ambulatory peritoneal dialysis (CAPD) therapy is being promoted as an option, as it can be performed independently at home with periodic medical supervision.

This approach is considered capable of helping to equalise services, reduce the burden on referral health facilities, and ensure patients continue to receive ongoing therapy without being disrupted by capacity issues at hospital dialysis units.

“The trend we’re seeing is that the number of kidney failure sufferers continues to rise. If we look at BPJS data, the number requiring therapy for haemodialysis or using replacement fluid bags continues to increase, and the amount of payments also continues to rise — so the cases are definitely growing,” said Dr Siti Nadia Tarmizi, Director of Non-Communicable Diseases at the Ministry of Health, speaking to detikX.