KUALA LUMPUR, March 4 — Phil* says he waited six months to see a specialist at the National Cancer Institute (NCI) in Putrajaya after he was initially diagnosed with small cell lung cancer in 2013.
The 44-year-old Sarawakian engineer pointed out that in the United Kingdom in contrast, he saw a specialist in less than a week after he registered with the country’s public National Health Service (NHS).
When asked what mattered to him in health care, Phil highlighted the speed of treatment and questioned why public hospitals could not be as fast as private facilities.
“It’s about the complacency of people inside there.
“The government says they cannot because of the sheer number of people, but the number of patients in private hospitals is growing and they can still keep the speed of treatments,” Phil told CodeBlue in an interview with a pseudonym because he fears losing his job if his condition is known.
He said another issue that mattered to him was the price of cancer medicines, pointing out that crizotinib, a targeted therapy drug that is unavailable in public hospitals, costs RM8,000 a box for a month.
He stopped taking crizotinib since mid last year when the government halted a pharmaceutical company’s patient assistance programme that had been giving him the drug for free, even though his doctor advised him to continue taking it for the next two to three years (if he could afford it) until his remission could be confirmed.
The Malay Mail however reported that the Health Ministry resumed the patient access scheme (PASc) since last December after a national audit cleared it over concerns of ethical violations.
Phil, who is now in “maintenance” mode after completing chemotherapy and radiotherapy for stage two lung cancer, said: “I didn’t continue [taking crizotinib] after that because it’s too expensive.”
To find out what matters to Malaysians in health care, CodeBlue ran an English-language online survey in February asking participants what are the things that are important to them, as well as the positive and negative aspects of public and private hospitals.
A total of 242 people responded. The five most important things to them in health care was shorter wait times at the hospital (71 per cent), cheaper treatments besides medicines (65 per cent), cheaper diagnostic tests (58 per cent), cheaper premiums for private health insurance (57 per cent), and more caring doctors (56 per cent).
More than half also wanted cheaper hospitalisation rates (55 per cent), clearer explanations by their doctor (52 per cent), cheaper medicines (52 per cent), and access to new drugs (51 per cent).
When asked what were some of the negative things at public hospitals, most participants mentioned excessive wait times at 91 per cent. Participants also complained about the lack of access to new drugs (44 per cent) and medicine supplies running out (38 per cent). More than a third faced uncaring nurses and doctors at 36 per cent and 33 per cent respectively.
As for private hospitals, 92 per cent of respondents found hospitalisation rates to be too expensive. About 86 per cent and 84 per cent said medicines and diagnostic tests were too pricey respectively. Almost half of respondents at 48 per cent complained that too many diagnostic tests were ordered, while only about 16 per cent said wait times were too long.
Most respondents said the good things about public hospitals were cheap treatments and experienced and caring doctors. For private hospitals, respondents liked their fast treatments, comfortable facilities, access to the latest drugs, and more attentive and caring doctors and nurses.
Almost half of respondents were patients (46 per cent), followed by caregivers (12 per cent), ordinary Malaysian citizens who were not patients (22 per cent), and health care professionals (13 per cent). About half of patients who took part in the survey suffered from cancer, followed by diabetes (10 per cent), and heart disease (6 per cent).
Caregivers who participated in the survey said they cared for patients with cancer (23 per cent), heart disease (21 per cent), diabetes (15 per cent), and stroke (14 per cent).
Doctor consultations in the corridor
Society for Cancer Advocacy and Awareness Kuching (Scan) president Sew Boon Lui complained about the small consultation rooms in the crowded cancer unit at Sarawak General Hospital (SGH), a public hospital that serves all Sarawakians with cancer because the public hospitals in Sibu and Miri do not have oncology facilities.
“When you go to Room 4 for chemo, there’s a moderate kind of table; at least two patients and two doctors are doing consultations parallel. So I get to hear what patients are going through,” Sew told CodeBlue.
She said the consultation rooms are not big enough to fit wheelchairs, so patients with disabilities have sometimes consulted doctors right in the corridor.
What is most important to Sew, a metastatic breast cancer patient, is access to treatment for cancer patients.
She pointed out that the targeted therapy drug she is on, pablociclib, costs over RM6,000 monthly at a pharmacy outside SGH because it is not available in public hospitals. She pays for it from her savings.
“What about the very poor people?” she asked.
She acknowledged that the government may be focused on providing medicines for people with early-stage cancer, rather than late-stage cancer patients, due to economies of scale.
“They’d rather save more people at early stage than save a few people and spend so much. That means Sew Boon Lui’s life is less than the other person. You cannot compare that way, right? But this is economics.”
Uncaring nurses, annoyed doctors
Phil*, who has sought treatment for cancer in a few public hospitals, said another issue of importance to him in health care was the quality of services by health care professionals.
“I don’t want to see a bitchy-looking nurse at the counter,” he said. “You shouldn’t pass judgment too.”
He said when he was in the UK from 2014 to 2015, nurses would check on him every 30 minutes even if they were not treating him.
“They’ll ask me ‘how are you?’,” he said. “When you feel like somebody cares, the pain lessens a whole lot.”
“Especially when you’re on chemo, you feel weak, you want to vomit, your hair is falling out, you have the dying feeling. But when somebody asks ‘how are you doing, anything I can help you with?’, it makes you feel much better.”
Phil also wanted doctors in public hospitals to give him complete information on his condition, what he could do about it, and what was the next step in treatment.
He said he would ask his brother who is a doctor whenever he had questions about his condition, rather than his own specialists.
“It’s because they don’t tell me what I need to do when I ask what kind of medicines I need, what food to eat, do I need another PET scan? But they get angry and tell me not to read the internet too much,” said Phil.
“I’m just trying to verify with you, my doctor, because you know best. The specialist says, ‘I’m a specialist and I’ve studied for nine years, don’t tell me what to do’. I’m not trying to tell you what to do.”
The cancer patient claimed that such nurses and doctors were common in government hospitals he visited like NCI, Putrajaya Hospital, and Hospital Kuala Lumpur, but Ampang Hospital was “okay”.
Phil, who has four daughters aged nine to 18 and lives in the upscale suburbs of Mont Kiara here, said he had private health insurance but did not want to use it because he was afraid his children may end up having to pay higher premiums. He was also unsure if the payouts would cover his cancer treatments at private hospitals.
“Why should I spend money on private when I pay 24 per cent [of my salary] on taxes? What are my taxes paying for?” Phil questioned.
He said the public health care system should not just be for the poor.
“What about me? What about my kids?”
Quality care at reasonable price
Madam Chan*, a 59-year-old cancer survivor from Kuala Lumpur, said she simply wanted quality health care at a reasonable price.
The accountant who used to earn RM10,000 monthly by the time she retired stressed that she was not necessarily wealthy just because she went to a private hospital to do surgery after she was diagnosed with first-stage breast cancer.
She pointed out that she could do it because of health insurance provided by her previous company.
“That doesn’t make me rich. Now that I’m a retiree, if I want to go back to government hospital, does that mean I’m not entitled to coverage?” questioned Chan, who spoke on condition of anonymity.
She was criticising the imposition of first-class rates under the Fees (Medical) (Amendment) Order 2017 on patients at Ministry of Health hospitals who were referred from private or university hospitals.
“Now we end up in private hospital and no one is regulating the fee. Private is too expensive,” she said, pointing out that she has been charged RM120 by doctors at private hospitals just for filling out a form that is two to three pages long.
The retired woman said unfriendly doctors and nurses, long wait times, and transportation costs for trips to the hospital were “low-priority” issues to her.
“Eh that’s nothing lah, compared to medication and the care,” she said. “If I get sicker, medication can be very expensive.”
She expressed anger at not qualifying for low public health care rates just because she previously sought treatment at private hospitals, pointing out that she has been a taxpayer for 35 years and used to pay RM20,000 to RM30,000 taxes a year.
“I’m paying that and someone else is benefiting,” she said. “Now that I’m sick, I’m paying from my own pocket.”