When Najua, 45, was diagnosed with first-stage breast cancer, many people kept asking her if she ate well or if she exercised, a question that started to grate on her.
Then there were the usual promotions on breast cancer screenings and insurance ads that she didn’t find very helpful. One poster in particular jumped out: “One in 10 women get breast cancer. Don’t be the one.”
Despite the frequent exhortations to women to regularly conduct breast self-exams, Najua was told by her doctors that she couldn’t have discovered her cancer just from feeling her breast; it had to be done through imaging.
We need to stop blaming women for getting cancer, or even for being diagnosed late.
Yes, screening rates need to be improved so that women have the best chances for survival when their cancer is detected early.
But some women end up being diagnosed with advanced breast cancer anyway, through no fault of their own. Should we then just give up on these women and act as if they brought their disease on themselves?
Beacon Hospital director and oncologist Dr Mohamed Ibrahim Abdul Wahid previously pointed out that in the United Kingdom, people are attached to general practitioners (GPs) for life, who tell their patients when to get a mammogram or pap smear to detect breast or cervical cancer early, respectively.
In Malaysia, where people do not usually have the same primary care physician throughout their lifetime, Malaysians are left to their own devices and to voluntarily get check-ups on their own.
When one-third of Malaysian adults have low health literacy, is it any surprise that women rarely go for mammograms or pap smears?
The National Cancer Society of Malaysia (NCSM) found that cancer screenings nosedived by over 80 per cent during the Covid-19 pandemic. NCSM cited the case of a woman in her early 50s who was diagnosed with early stage 1 or 2 breast cancer in December 2020, but she did not receive a treatment date. Five months later, she found the cancer metastasised to her lungs.
It is entirely possible for women with advanced breast cancer to live longer now compared to patients who were diagnosed a couple of decades ago, especially those with hormone positive breast cancer and HER2 overexpressed cancers, says Dr Nirmala Bhoo-Pathy, a public health medicine specialist in cancer control and cancer policy at University of Malaya’s Faculty of Medicine.
“Continued access to life-saving therapies, good supportive care, and survivorship care may help them to live longer and live well,” she tells me.
Dr Nirmala also notes that while the United States’ Food and Drug Administration (FDA) has approved multiple innovator drugs for advanced breast cancer, only a handful substantially increase survival.
“For these drugs, yes, the government does have a duty to fund.”
The issue of cancer goes beyond surviving the chronic disease, as patients need to deal with loss of income when they face discrimination and stigma in the workplace.
A Malaysian study by Kong YC et al published in 2020 in the Journal of Cancer Survivorship found that many cancer patients had insufficient paid sick leave, while some said they were passed over on a promotion, or even got demoted or were forced to resign upon disclosing their cancer diagnosis.
Cancer patients called for flexible working hours, lighter workloads, and dedicated rest areas to help them cope better.
Another local study by Kong YC et al published in 2020 in the journal, The Oncologist, on women with breast cancer in Malaysia cited limited insurance policy coverage for cancer care and “suboptimal” reimbursement policies.
Crucially, non-health expenditures were cited as an “important source of financial distress”, ranging from transport costs for low-income women to special food and appliances for higher-income households. Breast cancer patients across socioeconomic levels faced economic hardship from loss of employment or earnings.
Dr Nirmala highlights systemic gender discrimination that keeps women with breast cancer out of the workforce, who already have to deal with the long-term side effects of treatment like chronic fatigue and “chemobrain”.
Not to mention the perennial conflict between family and career, as women are still expected to continue contributing equally (or more) to perform household chores and caregiving in the same capacity before their cancer diagnosis.
“In the context of medical costs, although access to subsidised care from government hospitals and ownership of private health insurance may confer some financial risk protection to affected families, it is often forgotten that the are many instances in which there is a long-term need for some medications, and also that supportive care and life-long cancer surveillance may require out-of-pocket payments.
“Also, medical aids/ personal items such as mastectomy bras, breast prosthesis, and wigs, are not subsidised or reimbursed by insurance,” says Dr Nirmala.
Besides adequate paid time off work during the active treatment phase and subsequent follow-up appointments (ideally three to six months), Dr Nirmala also suggests tax incentives for companies who hire or retain cancer survivors.
The female labour force participation rate in Malaysia remains low at just 55.4 per cent in the fourth quarter of 2021, compared to 81 per cent for men, according to the Labour Market Review by the Malaysian Bureau of Labour Statistics at the Department of Statistics, Malaysia (DOSM).
The gender wage gap continues to persist here. In 2020, women employees earned a monthly mean salary of RM2,889, about 2.6 per cent lower than their male counterparts’ RM2,963 wage, according to DOSM’s Salaries & Wages Survey Report, Malaysia, 2020.
Only about two-thirds of women with breast cancer in Malaysia survive at least five years from diagnosis, compared to 80 per cent in Singapore and 92 per cent in South Korea.
As Health Minister Khairy Jamaluddin said last October, health budgets should be seen as investments, rather than expenditure.
“People who are healthier and able to survive cancer, can carry on working to help rebuild their lives, the economy, and the country.”
Malaysia needs to invest more in women with breast cancer through substantive structural change – beyond just telling women to get early screening – because a woman’s life is as valuable as a man’s.
Boo Su-Lyn is CodeBlue editor-in-chief. She is a libertarian, or classical liberal, who believes in minimal state intervention in the economy and socio-political issues.
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