KUALA LUMPUR, June 13 — Universiti Malaya Medical Centre (UMMC) epidemiologist Prof Dr Nirmala Bhoo Pathy has proposed a regional drug procurement model for Southeast Asia to improve access to life-saving medicines, particularly for cancer.
The public health medicine specialist in cancer control and cancer policy urged policymakers to look beyond narrow health financing reforms focused solely on hospital bills, touting regional procurement of expensive medicines instead.
“Why not regional level procurement? Asean-level procurement. We have successful stories from South America. So why can’t we follow the same? We can exclude Singapore and Brunei, but the rest — we are about 690 million people in Southeast Asia and Asean. So that’s a very big economy we are talking about,” Dr Nirmala said at a health care forum organised by the Universiti Malaya Student Union (UMSU) Faculty of Medicine on May 29.
She said Malaysia could strengthen its negotiating power by collaborating with neighbouring countries, particularly to improve access to “magic bullets” or high-cost cancer drugs that can significantly extend survival.
“Those magic bullets really work. From someone who survived for six months, they can survive for five years or more. It really matters.”
To further reduce drug-related costs, Dr Nirmala called for greater investment in local research, production, and regulatory approval of generic medicines. She also proposed funding for localised dose-optimisation trials to determine if reduced doses of expensive drugs could remain effective, particularly in low- and middle-income countries like Malaysia.
“An example would be investing in de-escalation drug-type trials. What it means is — if you have an expensive drug, can I experiment and use half the dose? Can I reduce the dose?
“We need to do that, and that needs to be very local. There are a lot of international trials, but they come once. In a way, we need more of those in low- and middle-income countries, especially Malaysia,” Dr Nirmala said.
She also urged the government to improve public sector drug supply chains, pointing to longstanding inefficiencies highlighted in national audits.
“We also need to improve public sector supply chain systems. In some hospitals, there’s underuse; in another hospital, there’s stock-out, expiring of drugs. These are not new. We have read about it in our Auditor-General reports, right? So why can’t we do something about that?”
Cancer Costs Go Far Beyond Medical Bills
Using cancer care as a case study, Dr Nirmala cautioned against equating health affordability with hospital bills alone. She said many patients in Malaysia, especially those outside the Klang Valley, face overwhelming non-medical and indirect costs.
Dr Nirmala shared the case of “Aisyah”, a fictional character constructed from real-life patient experiences, to illustrate the hidden costs of cancer care.
Aisyah is a 38-year-old single mother of two school-going children from Gua Musang, Kelantan, who was diagnosed with breast cancer and received free treatment at a public hospital. Her doctor told her she was fortunate because her cancer was curable and the treatment would be provided at no cost.
She underwent a mastectomy to remove her left breast, and while her doctor recommended breast reconstruction, the procedure was not available in the public sector. Although the doctor helpfully referred her to a private hospital, Aisyah declined — not because she didn’t want the surgery, but because she simply couldn’t afford it.
The cost of the operation, the time off needed to recover, and the associated loss of income were all beyond her means.
Aisyah also required physiotherapy to manage potential arm swelling, but turned it down as well, since every session meant taking unpaid leave from work.
She could not refuse radiotherapy, however, as her doctor warned it was necessary to save her life. This meant travelling long distances each week from Gua Musang, incurring additional costs in bus fares, child care, and household responsibilities — all while fearing her employer would lose patience with her absences.
Though she had a small insurance policy, it did not cover breast reconstruction or physiotherapy services available in her town.
She also could not afford a proper breast prosthesis and instead stuffed folded cloth into her bra. Her workplace lacked any space for her to rest, and on particularly difficult days, she stayed home and forfeited her wages.
“Her doctor said she was fortunate, but she doesn’t feel lucky. She’s not just surviving cancer. She’s surviving everything around it,” Dr Nirmala said.
These hidden costs include transportation, long-distance travel, lost wages, child care, caregiving, special diets, and medical aids like prostheses — many of which are not covered by public health financing or insurance schemes.
Dr Nirmala added: “Health care cost is not equal to medical bills. I know we have heard a lot about it. It’s very important. I’m not denying it at all. But all I’m saying is if we are only going to talk about medical bills, we are missing the picture.”
Equipment Failures, Paperwork Delays Push More Costs Onto Patients
Dr Nirmala said key cost drivers such as prostheses, supportive care, traditional and complementary medicine, and transportation are not typically included in discussions on affordability.
“We have a scale, and on one side, we have all the health-related expenditures. On the other hand, we have the salaries that people bring back to their houses, right? And what happens when a family gets affected? I’m talking about family because it doesn’t only affect patients, but it also affects caregivers.
“These are again not often talked about or accounted for in costing.”
She cited research published in The Lancet medical journal that found families in the bottom 40 per cent (B40) group can spend up to US$5,000 (RM21,280) a year out of pocket, particularly when public sector services are lacking. “You might be shocked, but that’s what we found.”
According to Dr Nirmala, breakdowns in equipment, long waiting times, and multiple hospital visits can further add to patients’ financial burden, even when treatment is technically “free”.
“When there’s a system gap, it becomes the patient’s cost. For example, equipment breakdowns, radiotherapy machine breakdowns — patients have to come again, many, many times.
“These are all out-of-pocket spending provisions and also awaited in accessing high-cost drugs. Some of the drugs are available, but require paperwork or referral to another hospital. All the delays that are related to the paperwork, the referrals, the approvals, cost money. It also costs money to the system.”
