KUALA LUMPUR, Sept 19 – Despite the huge cost, Navi Indran Pillai, who has advanced breast cancer, went to private hospitals because she couldn’t wait for three to six months at public facilities for a diagnosis and treatment.
“Because we are cancer survivors or going through cancer, we do not have that amount of time. We have to keep fighting every second and every minute,” Navi told a parliamentary briefing on cancer for MPs that was organised by the Galen Centre for Health and Social Policy last July 10.
The 29-year-old woman, who was first diagnosed with breast cancer in 2013 and aggressive stage four breast cancer in July 2018, said a diagnosis in private hospitals, in comparison, only takes three to six days.
She said even her cousins who are working as doctors in government hospitals, as well as her peers going through cancer, advised her to seek treatment from private facilities because of the purportedly long wait time in the public sector.
“Given a choice, I would want to save the financial burden on my family and me because private [hospital] is very expensive,” said Navi, who is nearly depleting her insurance after spending almost half a million ringgit in private facilities on cancer treatments like surgery, chemotherapy, radiotherapy, bone therapy, hormone therapy, and targeted therapy.
“In the near future, I hope we can work together with public hospitals to come up with treatments, or faster speed time for us cancer patients because we do not have time.”
Navi, who is working full-time at cancer nonprofit National Cancer Society Malaysia (NCSM) as a volunteer coordinator, currently spends RM15,000 every three weeks on pertuzumab, a targeted therapy that she is taking for life in combination with trastuzumab to treat HER2-positive advanced breast cancer.
Targeted therapy is a type of cancer treatment that interferes with certain proteins that help tumours grow and spread in the body.
Pertuzumab itself costs RM11,000, while a private hospital she visits charges her RM4,000 to administer the drug through IV for three to four hours in a ward. She said most private hospitals charge around the same price. Navi has to seek treatment from the private sector because pertuzumab is not available in government hospitals in Malaysia.
“We know these drugs are effective and working, but the cost that we have to pay is something to be mindful of. Health care providers need to think about the wellbeing of the patient after being treated and after coming out from cancer and being in remission. Because of the cost, we’re going into depression and stopping our treatment,” Navi told CodeBlue.
Navi previously wanted to discontinue treatment many times because of the financial burden on her parents — a CEO’s personal assistant (her mother) and a manager in a security company (her father), who are still working despite passing retirement age — and on her newlywed older sister who is expecting her first child.
“They’re working because of me,” said Navi, who performs Indian classical dance to help raise funds for her treatment and other cancer foundations.
Co-Payment and Patient Support Programmes As An Option
Mount Miriam Cancer Hospital, a non-profit Catholic hospital in Penang, has a co-pay system with a pharmaceutical company to help HER2-positive breast cancer patients who need trastuzumab.
Under the programme, Mount Miriam Cancer Hospital pledged RM1 million from a fund to enable cancer patients to pay RM2,100 instead of RM8,900 for a cycle of targeted therapy, saving up to 75 per cent for a standard treatment that usually requires up to 18 cycles.
“This 12-month programme is open to 20 new deserving HER2-positive breast cancer patients on a first-come first-served basis. It is open for application from 1 March 2019 to 29 February 2020. Those who are interested can apply from Mount Miriam Cancer Hospital’s Medical Social Welfare Department,” Mount Miriam Cancer Hospital CEO Joan Lim-Choong told CodeBlue.
National Cancer Society of Malaysia (NCSM) medical director Dr M. Murallitharan said all private hospitals in Malaysia with oncologists also run patient support programmes that provide new and expensive cancer drugs, generally on a buy-one-free-one principle. Sometimes patients on combination treatments get the cheaper drug for free while paying for the expensive medicine.
He estimated that more than a thousand cancer patients benefit from these assistance programmes at private hospitals.
“Patients need to individually register for the programme and subsequently, the drug is supplied to them from the support programme via the hospital or via a third party,” he told CodeBlue.
“Due to compliance issues, running a support programme is expensive as the drug company cannot be in touch with patients directly to send/ receive/ check whether they receive the drug. As such, they engage third parties to undertake this task – at an additional cost.”
Dr Murallitharan said similar patient assistance programmes are also run in certain public hospitals where patients themselves purchase medicines that are unavailable in government facilities with a small discount of 10 to 15 per cent, but it depends on whether their doctors know about these programmes.
“It’s not automatic, he said.
Dr Murallitharan said institutionalising patient assistance programmes in government hospitals could improve transparency and access to new treatments, but also cautioned that this may pressure patients into paying for medicines that they can’t afford.
Economic Burden Of Cancer
Dr Nirmala Bhoo Pathy, associate professor at the Faculty of Medicine, Universiti Malaya, told the parliamentary briefing that according to a study she ran, one out of five households in Malaysia experience “catastrophic” expenditures after a cancer diagnosis.
“Catastrophic” expenditure means that a family spends more than 30 per cent of their household income on cancer-related expenses like medicine, doctor visits, hospitalisation, and special equipment.
Dr Nirmala — who is the lead researcher for Malaysia in the 2015 Asean Costs in Oncology (ACTION) study by the George Institute for Global Health in Australia — found that the number of Malaysian families pushed into financial catastrophe rose to one out of two if non-medical costs were factored in.
These included transport to medical facilities, traditional and complementary medicine (up to RM20,000 a year), wigs (RM30 to RM3,000 per set), child care and household help, and healthy food.
Cancer drugs are not cheap. Trastuzumab costs RM3,000 per cycle; abiraterone for prostate cancer costs RM13,000 per month; and cancer drug bevacizumab costs RM5,000 per cycle, according to Dr Nirmala.
The ENSURE high-protein milk costs RM300, while mastectomy bras and prosthesis are priced at RM900 per set. Colostomy bags cost between RM1,000 and RM2,000 a month.
“Loss of income is a major source of economic hardship,” Dr Nirmala told the briefing.
“Among people looking for financial assistance, they complain about how difficult it is to navigate the complex system to obtain financial assistance — those who have to go to EPF (Employees Provident Fund) and Socso.”
She claimed that Socso, Malaysia’s social security scheme for workers, was not helpful for cancer patients, as only those in advanced stages or the disabled could get help.
“And even then, it’s not consistent,” said Dr Nirmala. “Socso is not very transparent with who gets and who doesn’t get help. So Socso needs revamping in Malaysia.”
She observed that Socso doesn’t have specific schemes for cancer, except for an Invalidity Pension Scheme (Pencen Ilat) for people with terminal illness.
“Therefore, the Employees’ Social Security Act 1969 needs amendment to allow the introduction of a scheme from Socso that caters to patients with chronic diseases, namely cancer. The scheme needs to ensure that all forms of cancer treatment are wholly subsidised, and patients should be able to claim Socso benefits regardless of cancer stage,” Dr Nirmala told CodeBlue.
A public forum titled “Beating The Odds and Surviving Advanced Breast Cancer” will be held on September 22 (Sunday) at Asian International Arbitration Centre. Entrance is free and all are invited to attend.