When bills pile up
Over half of Malaysian cancer patients are pushed into financial catastrophe within a year of their diagnosis due to both medical and related non-medical costs.
KATHARANI Anthony is only too familiar with the idiom “when it rains, it pours”.
While in her mid-30s, she experienced lengthy bleeding episodes from uterine fibroids.
After four years of frequent fainting spells and hospitalisations for blood transfusions, she had her uterus removed.
She eventually left her job at a legal firm as she was often calling in sick due to the anaemia and weakness from her condition.
Added to that, she had to pay off her then-husband’s huge housing debt after he ran away.
Katharani eventually divorced him and remarried a man with three kids.
With her health a bit stable, she took up a clerical job at a tuition centre in Rawang, Selangor, where she lives.
Alas, another blow came in 2017. She detected a lump in her breast and was diagnosed with stage 2 inflammatory breast cancer – a rare, aggressive type of cancer that often starts in the soft tissues of the breast and causes the lymph vessels in the skin of the breast to become blocked.
The 50-year-old recalls that although her insurance had previously covered her treatment at a private hospital, she had reached her limit and had to continue her treatment at Universiti Malaya Medical Centre.
“Since I had to pay upfront before I could make any claims, I took out my EPF savings and borrowed from friends to do the treatment, which involved six chemotherapy cycles and 23 radiotherapy sessions.
“The total bill came up to RM30,000,” she says.
She suffered side effects from the treatment and depended on her husband, a Grab driver, to take care of her.
That meant that he couldn’t work much either.
Upon completion of her treatment, she was told she still needed a year of hormone therapy, which would cost a further RM150,000.
Katharani was so shocked that she fainted.
“I said no! Instead I asked what else I could do and the doctor advised me to exercise, try meditation and yoga because I was too stressed.
“But these cost money to learn so I started exercising on my own.
“I must have done something wrong as I got a slipped disc,” she shares.
Not surprisingly, Katharani fell into depression and was referred to a psychiatrist.
These days, she has to take sleeping pills every night and has missed some of her appointments because she’s financially drained, although she hasn’t officially filed for bankruptcy.
She also had no income during the first four months of the movement control order as the tuition centre where she works was closed.
Her husband’s car is also having problems, but he cannot afford to repair it.
She says, “My monthly expenses for medications and household expenses amount to RM4,000.
“I have to make a lot of budget cuts.
“Thankfully, our two older children are working and chip in whatever they can to help us make ends meet.”
Despite life’s challenges, Katharani tries to keep her spirits up.
“I always wonder why this fate has befallen me and I have no answers,” she says resignedly.
“On the bright side, we’re never in hunger as we still have food to eat daily.
“We don’t buy fish because it’s too expensive, but we do have chicken once a week.”
Unfortunately, Katharani is not an exceptional case as there are many cancer survivors in a similar predicament.
Unmet needs
According to the 2015 Asean Costs in Oncology (Action) study, a high percentage of cancer-stricken households in the low- and middle-income countries in South-East Asia, including Malaysia, experienced catastrophic expenditure and impoverishment within just one year from cancer diagnosis.
Says the study’s Malaysian arm principal investigator Associate Professor Dr Nirmala Bhoo-Pathy: “The financial distress brought about by a cancer diagnosis may not only have a negative impact on patients’ treatment choices and adherence to treatment, but also lead to deterioration in the quality of life and psychological wellbeing of patients and their families.
“While some form of financial counselling or assistance programmes for cancer patients are available, they are usually focused on a specific episode of cancer care, rather than on the patient’s overall treatment plan.
“Furthermore, many of these programmes are also limited to a specific population, such as the uninsured or those with severe disease, leaving out those who are underinsured or with early stage cancer, who are also vulnerable to financial toxicity (the impact on a patient due to healthcare costs).”
As the Action study was limited by the lack of finer details on various costs incurred by patients and their families following a cancer diagnosis, it was difficult to gauge the financial needs of affected households.
Such information is vital for the planning of financial assistance and welfare support services to reduce the risk of financial toxicity following cancer, as well as in designing benefit packages for health insurance coverage.
Hence, the Universiti Malaya clinical epidemiologist and her team embarked on a qualitative study from 2018 to 2019 to probe further into the issue.
They recruited 64 breast cancer patients from a public hospital, a public academic hospital and three private hospitals, and divided them into different focus groups.
Eligible participants comprised Malaysian patients above 18 years old from various ethnic and socioeconomic backgrounds, who were diagnosed at least one year prior to the study.
The study titled Understanding the Financial Needs Following Diagnosis of Breast Cancer in a Setting with Universal Health Coverage was recently published in The Oncologist journal.
“We found many unmet financial needs, even among patients with medical insurance.
“More importantly, our study highlighted the major unmet need for a financial navigation programme to assist patients in understanding the costs of their cancer care, filing health insurance claims and navigating the complex system in obtaining financial assistance.
“Basically, they didn’t know where and how to seek help,” says Assoc Prof Nirmala.
Returning to work
When breast cancer affects a woman, it affects her entire family.
Returning to work poses a bigger challenge for breast cancer patients, compared to other cancer patients.
Assoc Prof Nirmala says, “We anticipated that patient expenditure would be high during treatment, and if they went to private hospitals, they would have spent more.
“Although we didn’t capture the actual cost in the study, we looked at the types of cost – both health and non-health – from the perspective of the patient.
“There were problems common to all groups and some specific to one group.”
In terms of employment and earning, problems faced include income loss, job loss, workplace inflexibility, discrimination and impact on carers.
“A lot of them cited return-towork problems and employmentrelated challenges.
“Their productivity may have dropped after the cancer treatment and they were no longer able to do what they easily used to do before.
“If they were in sales, there was an income drop.
“Patients sometimes experienced side effects like pain, so they couldn’t contribute 100% to their jobs and were discriminated against as time went by.
“All they wanted was some empathy, but they were thrown back into the same workload and they couldn’t do anything about it.
“Even requests to transfer to another department were not entertained and that finding was something that shocked us as we thought employers would be more sympathetic.
“A percentage of them were also fired,” she reveals.
Those in multinational companies were treated a little better, but smaller companies viewed employees with cancer as a burden.
Assoc Prof Nirmala adds, “Some of these patients were demoted or overlooked for promotion.
“Or the management would purposely put them under pressure so that they would resign.
“So a lot of them were disappointed with a lack of support at the workplace.
“Being employed was the only way they could pay for their treatment, so imagine, you are struck by an expensive disease and you have this additional problem, which is sad.”
From private to public
For those with medical insurance (own or employer-sponsored), financial issues cropped up when their insurance ran out and they were referred to public hospitals.
Due to the long waiting time at such hospitals, some patients opt to have their surgery at private hospitals before continuing treatment at public hospitals.
“People tend to think if patients go to private hospitals, they are from the higher economic group, but that’s not true.
“It could be due to a need for urgent treatment or they have employer-sponsored insurance,” Assoc Prof Nirmala says.
Patients from private hospitals referred to public hospitals are automatically charged first-class fees under the Fees (Medical) (Amendment) Order 2017.
The Order categorises patients into different classes of fee schedules based not on their ability to pay, but the mode of referral.
Under the first class category, services such as outpatient fees, drug costs, blood and imaging costs, and inpatient charges, are charged one price, regardless of the actual cost of the services.
With this model, patients who obtain their monthly medications from the public hospital could end up paying much more for the same drugs, if they cost less than the set price, compared to at a private hospital.
However, all registered PeKa B40 patients, including privately refer-red patients, are exempted from these first class fees.
Essential items
Assoc Prof Nirmala adds: “At the hospital, they must buy food for themselves and the person accompanying them, pay for parking, transportation, etc.
“Someone must care for their small children at home.
“Those in higher income groups may not understand this because they have paid help at home.
“The issue of household help when it comes to female cancers is not highlighted.
“Unlike men, apart from working, we also have to juggle many things.
“This highlights the role of a mother and woman in society.”
The need to spend on essential items such as breast prostheses, mastectomy bras, corsets and wigs, was repeatedly highlighted by a number of participants.
These are not covered by insurance as they are considered cosmetics.
“We feel this is really unfair as the prosthesis is unaffordable for the lower income group.
“So they stuff something else into their bra and that shouldn’t be happening.
“The government should offer some subsidies.
“Overseas, it is part of medical care, but not in Malaysia.
“Insurance companies should revise plans to factor this in,” she says.
Participants from lower socioeconomic groups also faced difficulties affording basic necessities such as food, following their cancer diagnosis, while those from higher income households brought up the need to spend on perceived “better” food, such as organic food, as well as dietary supplements.
This substantially increased their household expenses, as they were not just spending for themselves, but also for their families.
Some patients also mentioned spending on appliances such as fruit juicers or special water filters.
Insurance illiteracy
When one is diagnosed with cancer, the disease can be dealt with, but the financial challenges can be overwhelming.
This applies to all income levels, with or without medical insurance.
Irrespective of educational levels, the insurance knowledge among participants was poor – most were clueless on the contents of their policies.
“Most women reported having insurance, but when we probed, they actually had life insurance, not health.
“Or they knew their insurance covered cancer, but didn’t know how much.
“That’s not something we want to address when someone is diagnosed with cancer – they should know it beforehand.
“The decision to buy a policy should be made 20 years ahead,” says Assoc Prof Nirmala.
She advises people to pay attention to the kinds of benefits covered before signing up.
For those with higher purchasing power, they should purchase a more comprehensive health insu-rance policy.
“Not all insurance policies allow you to access medical services immediately.
“You might have to pay first before being reimbursed.
“This is okay for patients who are financially solvent.
“But for those in the middle class with limited coverage for cancer, they felt lost because they didn’t know how to manage these uncertainties and wanted help to sort their way.
“For the B40 group, there is the Welfare Department, but their hands are full and their scope is limited.
“With cancer, even people who earned well wanted some support, but there are no services for them.
“Most hospitals have financial counsellors, but not financial navigators – our participants didn’t know how to utilise services by Socso, EPF, etc.
“In the Action study, 4% of the population went bankrupt or took massive personal loans to pay off debts from cancer,” she shares.
Hence, there is an urgent need for a community-based financial navigation service comprising different stakeholders from the nonmedical side to assist these patients.
Ultimately, financial toxicity can do more harm than cancer.
It might even kill you.