Wiwik Wardati Baharuddin, a 44-year-old head nurse in a local private hospital, gave birth to her second daughter that she had struggled to conceive in 2020. However, her joy was short-lived. A year onward, Wiwik was diagnosed with stage 4 breast cancer metastasis to the liver.
I did breast self-examination, and it felt different. It’s something that I have seen in other patients too. But I delayed getting it checked for quite some time. – Wiwik Wardati Baharuddin, stage 4 breast cancer patient
Breast cancer remains the leading form of cancer in women, risking one out of 19 women in Malaysia. Breast cancer may be misconstrued as an ailment affecting older women, but it is no longer the case, with 11.3% of breast cancer incidences being amongst women under 40.
Wiwik, upon the persuasion of her sister, took her mammogram and when the result was out immediately discussed it with her oncologist in Pantai Hospital for a quick biopsy.
Similarly, Alice or Sagayamary A/P Arulappan, a single mother with a stage 4 breast cancer patient, Alice who led a busy life tending to her four children and was working as an e-hailing driver, ignored the lump on her breast a little longer.
In November 2020, I felt that there was something on my left breast. I had never thought of it being cancerous, so I left it. During the year’s end, we were busy with Christmas. But in January 2021, I went to the nearest clinic, and they gave me a referral letter to Hospital Kuala Lumpur. – Sagayamary A/P Arulappan, a stage 4 breast cancer patient
Alice was eventually diagnosed and was placed under chemotherapy immediately. The core treatment of breast cancer includes mastectomy or surgery involving the removal of breasts, chemotherapy and radiotherapy. However, the course of treatment and the cycles required for chemotherapy and radiotherapy differ case by case.
In recent years, 63.7% of cancer patients were diagnosed at later stages between 2012-2016 requiring more advanced treatment.
It’s possible that cancer is more aggressive, and many have also been diagnosed at later stages. There are more treatment options these days, but it is also more expensive. – Mardianah Mohd Yusof, a breast cancer survivor, and president of Persatuan Pink Champion Perak
The newer medications and the treatment on the market come with a hefty price tag for those with advanced stages of cancer. A reality Sew Boon Lui who is currently living with metastatic or advanced breast cancer is familiar with.
The Price Of Getting Better
Sew Boon Lui was first diagnosed with stage 3 breast cancer at 39. After her core treatment and the administration of oral hormonal medication for five years starting from 2012, Boon Lui was declared to be in remission.
All my treatment costs were very affordable with heavily subsidised treatments (including 20 sessions of radiotherapy, eight cycles of chemotherapy and five years of oral hormonal medication for my hormone-positive nature) in Sarawak General Hospital. I had my insurance cover some of the expenses for my mastectomy in Singapore. After which, my insurance policy ended. – Sew Boon Lui, advanced cancer patient, founding president of Society For Cancer Advocacy And Awareness (SCAN) Kuching
The same goes for Wiwik, who relied on her insurance scheme to fall back on her cancer treatment.
I immediately called my insurance agent and asked whether the insurance was enough. The mastectomy alone cost RM 50k, thankfully, the insurance would cover more of my health expenses.– Wiwik Wardati Baharuddin, a stage 4 breast cancer patient
Wiwik is in the process of trying out different avenues for financial aid, as to supplement any possible changes in her treatment plan.
I found out that by paying PTPTN saving schemes for my daughter, there’s insurance that covers the payer. I recently applied for that, and now I’ll be applying for SOCSO’s invalidity scheme. I have also withdrawn my retirement savings.– Wiwik Wardati Baharuddin, stage 4 breast cancer patient
However the brunt of cancer treatment is still costly despite government subsidies. Alice, who is limited in the ability to earn a stable income while in her recovery process heads straight to her retirement savings to fund her cancer treatment and keep her household afloat.
She has also received help from her local church community and friends chipped in where they could and Alice also applied to the Invalidity scheme. Alice shared that there are also other hidden costs that her treatment incurred such as transportation to the hospital for follow-ups and treatments.
Every time I have to attend the follow-up, it would cost me around RM200, for the medication and the transportation. During peak hours, the fare could hike up to RM35 from my place in Desa Petaling to HKL.– Alice, a stage 4 breast cancer patient
The Accessibility And The Affordability Of Advanced Treatment
Wiwik is currently on targeted medication. Alice is undergoing physiotherapy and taking targeted medication to keep cancer at bay. In the past, Alice took intravenous hormone medication, Herceptin, priced at RM1,500 and managed to receive the help of MAKNA to bear the cost.
However, Boon Lui is still going through a tumultuous cancer journey. Three months after an annual check-up which showed that she’s still in remission, a chest pain prompted her for a medical check-up, and she was diagnosed with metastatic cancer.
Boon Lui consulted three different oncologists for the most effective treatment to keep her cancer at bay. She started on a novel treatment, the Endocrine Targeted Treatment, in 2017, paying from her savings for each box of the medicine priced at RM6,000.
The government provides subsidies for older medications but not for newer cancer medications. – Sew Boon Lui, advanced cancer patient, founding president of Society For Cancer Advocacy And Awareness (SCAN) Kuching
Boon Lui thankfully, benefitted from a patient-assisted program that was made available after paying RM 6k+ a month for the first 1.5 year for her endocrine treatment easing her burden.
The following 2.5 years, I was in a patient-assisted program and I was able to purchase the medication at a discounted rate. At the same time, I have received some free boxes. – Sew Boon Lui, advanced cancer patient, founding president of Society For Cancer Advocacy And Awareness (SCAN) Kuching
However, the cancer had become resistant to the medication, changing her treatment plan to government-funded oral chemotherapy. But, the result had been mixed with the cancer metastasizing as shown on her PET/CT scan. The scan done at the only private hospital in Kuching every two to three months has also seen a price hike from RM2,800 to RM3,200 per scan starting March 2022.
Over five years, Boon Lui went through multiple chemotherapies. Some were self-funded, costing up to RM 5.5k per cycle. She is now on her 5th line of treatment, with a combination of two drugs that are currently subsidised by the government.
Her rough estimate of the expenses incurred over the five years reached up to RM254,960, excluding the trips she took to KL to tackle her liver tumour with advanced radiotherapy as it is unavailable in Kuching. Boon Lui is determined to try newer treatments to extend her lifespan and believes that with the advancement in healthcare, more costs may incur if her current treatment plans don’t work.
But one thing weighs heavily on Boon Lui. She had savings from being in the workforce for 25 years, but the accessibility and affordability of advanced treatment are not extended to many more who are in her shoes.
Deep Pockets Can Extend The Lifespan Of A Cancer Patient
According to Cancer Research Malaysia (CRM) breast cancer patients in Malaysia from high-income households have a higher survival rate of 90% compared to low-income patients with a less than 65% chance of surviving the disease.
I really wish there will be a cancer foundation in the near future to help patients, like those with metastatic breast cancer or metastatic cancer of other types, to be able to get better and stronger support financially. – Sew Boon Lui, advanced cancer patient, founding president of Society For Cancer Advocacy And Awareness (SCAN) Kuching
The SOCSO invalidity pension that Wiwik, Alice and Boon Lui are part of only provides RM1,500 per month and may support some of their living expenses as cancer patients. The financial cost may be one of the hurdles most cancer patients go through, but it bears the utmost importance to many.
If the financial aspect of the treatment is resolved, patients will have less emotional stress to bear. There is a lot that runs through their mind, especially for those who stay in rural parts of East Malaysia. How much money do I have to spend to travel, who is going to take care of my children, how do I get there? – Sew Boon Lui, advanced cancer patient, founding president of Society For Cancer Advocacy And Awareness (SCAN) Kuching.
However, there are organisations and changemakers lending their hands to assist breast cancer patients through financial aids that could reduce their economic burden:
- Breast Cancer Foundation Malaysia provides financial assistance to breast cancer patients in terms of medical treatment, medication and personal needs. The foundation’s beneficiaries include breast cancer patients with a monthly household income of RM 5,000 and below.
- Beacon Hospital under the Breast Cancer Chemotherapy Welfare Fund reduces the treatment expenses of eligible patients through subsidising the balance. Eligible patients are only required to pay 10% of the charges.
- Majlis Agama Islam Wilayah Persekutuan (MAIWP)’s Baitulmal extends their help to Muslim cancer patients in the federal territories. The assistance provided includes financial aid and equipment to patients.
- Majlis Kanser Malaysia (MAKNA) has assisted 71,247 cancer patients since its establishment in 1995. The council aims to provide holistic assistance to the patients, including financial aid and physical, emotional and educational support.
- Mount Miriam Roche Cares Program is a collaboration between a local private hospital Mount Miriam Cancer Hospital and Roche, a healthcare company. The partnership aims to ease the financial burden of patients undergoing targeted treatment for HER2-positive breast cancer patients.
- Yayasan Kossan supports treatment expenses for patients from households with earnings of RM 5,000 and below.
Explore our sources:
- GC Lim &Halimah Y. (2003). Second Report of the National Cancer Registry. Cancer Incidence in Malaysia. Link.
- K.F.Tan, F.Adam, R.Hami, N.Mohd Shariff & N.M.Mohd Mujar. (2020). Review of Breast Cancer in Young Women. Link
- Ministry Of Health. (2019) Malaysia National Cancer Registry Report 2012-2016. Link
- BFM. (2022). International Women’s Day: Living For More Tomorrows. Link
- A.Zainudin. (2021).Breast Cancer Survival 25% Higher For Rich Than Poor Patients. CodeBlue. Link
- A.Zainudin.(2022).The Real Cost Of Cancer In Malaysia.CodeBlue. Link