The alarming gap in cancer treatment funding – Sew Boon Lui

I’m Boon Lui, a breast cancer survivor and patient advocate. In 2017, I opted for early retirement and formed the Society for Cancer Advocacy and Awareness Kuching (SCAN for short) with a group of like-minded survivor friends.

We raise awareness about cancer, highlight important cancer care issues to relevant authorities, and engage with many other patients through our peer support and advice.

I was first diagnosed with stage 3 breast cancer in 2006. Apart from having my left breast removed at a private hospital in Singapore, I underwent all other treatments at Sarawak General Hospital (SGH) in Kuching, Sarawak, where I have lived since 2000. .

All of my treatment costs were very affordable with heavily subsidized treatments (including 20 sessions of radiation therapy, eight cycles of chemotherapy, and five years of oral hormone medication for my hormone-positive nature). My insurance covered part of the cost of my operation in Singapore, after which my insurance policy ended.

When my breast cancer came back in 2017, spreading to my right lung, liver and bones, i.e. what we called metastatic breast cancer (MBC), my SGH oncologist told me recommended a new targeted therapy drug to be taken by mouth. This drug was not, and still is not, funded by our government.

Had to pay out of pocket for a good four years in generally stable condition. An exception was in October 2019, when a single growth tumor in my liver became a terrifying threat.

Advised by my oncologist, I underwent two medical attempts – a microwave ablation procedure (MWA) and advanced radiation therapy, i.e. SBRT, to combat this tumor. Both of these treatments were only available in private hospitals and were self-sponsored.

Targeted therapy cost over RM6,000 every month until a patient assistance program was made available a year and a half later. I then bought the drugs at a reduced price and received free boxes later. This drug worked well for me until it lost its effectiveness in August 2021 when my PET/CT scan showed further cancer progression.

My oncologist has since switched me to oral chemotherapy (government funded, Sept 2021 to Jan 2022). However, it gave me a mixed response (some cancerous spots are stable while others are growing) as shown by PET/CT scan after six cycles.

Shortly after, I received chemotherapy drugs IV (intravenous, that is, injected into the vein) – no. 1 then no. 2, which was to be self-purchased as it was not funded by the government. The reason for the change of chemotherapy drug was due to a mixed response observed during repeated PET/CT SCANs after 4 cycles each.

I am now on my fifth line of treatment using a combination of two (government funded) chemo drugs, as chemo drug no. 2 didn’t work well for me too.

Over the past five years with MBC, over RM254,000 has been paid out of my savings for my treatments including PET/CT scans (done at the only private hospital in Kuching, Sarawak, with this machine). I paid RM50,000 per year (or more than RM4,200 per month), excluding living expenses.

My savings are running out fast.

Although I am a beneficiary of the SOCSO disability pension scheme from the end of 2017, the monthly scheme of around RM1000 is only for living expenses rather than medical care.

Nevertheless, I am fortunate to have a financial backup of my last 25 years of income. It is a blessing that my treatment has kept me alive so far.

Now the question is, what about other metastatic breast cancer patients from low-income and no-income groups, such as retirees and single mothers?

The reality is that most cancer patients seeking GHS treatments belong to the B40 group, and a lower percentage belong to the M40 group. Even those in the M40 group will struggle to cope with high drug costs, which add to their family’s daily expenses.

Without financial means, these cancer patients could only receive government-funded treatments (whether chemotherapy or radiotherapy, if deemed appropriate to help them). They will not have access to advanced drugs like targeted therapy that must be self-funded and lose out on optimal cancer health care, including an increased risk of mortality.

In addition, patients further away from Kuching also have to invest heavily in their travel costs to Kuching, and vice versa.

Affordable cancer treatment is simply not there for most Malaysians when their diseases are at advanced stages requiring advanced drugs for their treatments. Can we really say that our public health system provides universal health care coverage?

The Ministry of Health may think that with a limited budget, government funding can only be prioritized to those who need cost-effective treatment. Rightly, those early stage cancers with standard or established drugs with high survival rate have been statistically proven.

Access to health care is a basic human right.

Regardless of your age, sex, race, ethnicity, place of residence, income or any other factor, you have the fundamental right to health care.

The family and community would retain hope for a prolonged life of loved ones with a respectable quality of life if a patient with advanced cancer had access to intensive care and therapy.

Instead of viewing cancer treatments as an economic cost or burden, we should start viewing them as investments.

I sincerely plead with the government to find solutions to provide new medicines to patients through innovative solutions. Some of which could be:

  • Through national health insurance schemes like those that countries like Taiwan and Singapore have in place.
  • Grant waivers to cancer patients who have contributed to annual tax payments in the past.
  • A fund for cancer drugs could be created. Encourage people in the T20 group to contribute to this fund by granting them some form of tax exemption.

The gaps in cancer care in Malaysia are glaring and need to be addressed.

It is predicted that there will be 66,000 cases of cancer per year by 2030, with a considerable percentage presenting at a late or advanced stage. It is critical that the government prioritize cancer reform to improve access to affordable cancer treatment.

Can we soon see the light at the end of the tunnel for all cancer patients with affordable treatments?

I eagerly and urgently await a positive response to this.

Sew Boon Lui is a patient advocate and founding president of the Society for Cancer Advocacy and Awareness Kuching (SCAN). SCAN is a registered society and member of the International Union Against Cancer (UICC). It was created to become the unified voice of all cancer patients to improve access to high quality public health care and to raise awareness of cancer in the general public in order to increase survival.

  • This is the personal opinion of the author or publication and does not necessarily represent the views of code blue.

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