KUALA LUMPUR, Oct 6 — Patients and health advocates are urging the government to strengthen support for peritoneal dialysis (PD), a home-based treatment that offers more flexibility and independence than centre-based haemodialysis (HD).
They argue that PD allows patients to work, travel, and manage their own care with fewer disruptions, but the system often overlooks the financial and emotional burden faced by both patients and their caregivers.
Raihana Rosman, a PD patient, pays up to RM250 each month for medical supplies that fall outside the Social Security Organisation’s (Socso) coverage, even though Socso funds over RM4,000 monthly for her PD treatment.
“Socso covers my machine and solutions. But aside from that, everything else is on me,” Raihana said at the Galen Centre for Health and Social Policy’s symposium, “Saving Lives: Strengthening Peritoneal Dialysis Care in Malaysia Through Public-Private Partnerships”, supported by Vantive Health LLC, last April 15.
After discovering she was allergic to iodine, Raihana had to purchase Octenisept for her dressing care, which costs RM80 per bottle and is not covered by Socso. She also pays for special adhesive tapes due to skin sensitivities and uses icodextrin, a dialysis solution that isn’t subsidised.
“Medications, supplements, tapes — they all add up. A ballpark would be around RM200 to RM250 per month,” she said.
Beyond personal costs, Raihana also highlighted the often-overlooked burden on informal caregivers, especially those who are elderly or balancing work and family responsibilities.
“I work full-time, but I still need help from my parents, especially my dad who drives me and helps with my PD equipment,” she said. “Some caregivers are mentally drained. They need emotional support, maybe counselling. Right now, it’s lacking.”
Peritoneal Dialysis Offers Greater Flexibility Than Haemodialysis
Peritoneal dialysis (PD) and haemodialysis (HD) are both treatments for kidney failure, but they differ in how the body is cleansed of waste and excess fluids.
HD is typically performed in a dialysis centre, where a machine filters the blood through an artificial kidney (dialyser) over several hours, usually three times a week.
In contrast, PD is a home-based treatment that uses the peritoneal membrane in the abdomen to filter waste and excess fluids, allowing patients to perform the treatment themselves.
There are two types of PD: Continuous Ambulatory Peritoneal Dialysis (CAPD) and Automated Peritoneal Dialysis (APD). CAPD involves manual exchanges performed several times a day, while APD uses a machine to perform exchanges, typically overnight, allowing patients to continue with their daytime activities.
PD offers greater flexibility, enabling patients to work, travel, and manage their treatment with fewer disruptions, compared to the more rigid schedule required by HD.
This flexibility has made PD an attractive option for many patients seeking greater independence in managing their care.
PD Allows Flexibility For Active Lifestyles
Khairul Shazwali Taib, a PD advocate, shared his experience of choosing PD over haemodialysis after his diagnosis in 2016 because it allowed him to stay active and employed.
“Even though I was doing continuous ambulatory peritoneal dialysis (CAPD) four times a day, it only took 30 to 35 minutes each time. After that, I could return to my normal routine. It didn’t disrupt my work,” he said. “People take cigarette breaks longer than that.”
However, he stressed the importance of workplace support. “As a private sector worker, I had to manage expectations and explain to my employer that I could still perform. Unfortunately, there’s still a perception that people on dialysis can’t work.”
Khairul accessed subsidised care through his wife, a government servant, but still had to cover other expenses.
“Supplements, additional medication, accessories — not all of it is covered. These are real costs,” he said.
Financial Incentives To Support Caregivers Of PD Patients
Dr Lily Mushahar, head of the nephrology department at Tuanku Ja’afar Seremban Hospital, stressed that PD is a cost-effective and empowering option for patients. She also noted that Malaysia has made significant strides in providing access to PD.
“Malaysia is heavily subsidised. In some countries, patients can’t even get automated PD (APD) because it’s so expensive,” she said.
However, Dr Lily acknowledged that caregiver support remains inadequate. “In European countries, community nurses help with home dialysis. In Malaysia, it’s often family members – and they do it free of charge,” she said.
As a member of the International Home Dialysis Consortium (IHDC), Dr Lily is working on recommendations to encourage PD adoption and improve caregiver support.
“One proposal we have is to waive electricity bills for households using APD. That could make a real difference,” she said.
“Some children quit their jobs just to care for their parents on dialysis. We need to think about how to support them too.”
