Every year, far too many Malaysians are touched by the pain and hardship caused by cancer.

Cancer rose from being the fourth cause of death in Ministry of Health hospitals in 2012 to being the third a couple of years ago. It is currently the second cause of death at private hospitals. Due to an increasing aged population, it is expected that cancer will soon become the main cause of mortality. Incidence has steadily increased each year and is now estimated to be around 40,000.

Most of us know or have heard of someone who had or is living with cancer. Almost every Malaysian family has been touched by at least one form of the disease.

I recently spent time with a group of cancer patients, survivors, warriors and their families and caregivers from different parts of the country. We spoke of their experiences in dealing with the disease, the hardships, the suffering endured and the strength to persist, fight back and survive.

Listening to their stories, I sensed frustration. Recent talk about the possibility of another national car project, an endeavour which would cost hundreds of millions annually, reemphasised the perception that the national effort to prevent, control and treat cancer remains underfunded and under-resourced.

Malaysians can be really patient in the face of adversity and tolerate a great deal. We are often told to bersyukur or be grateful with what we have and not to demand for more.

However, there is a limit. I noticed that amidst the resignation and frustration, there was also quiet anger.

Considering that more than 70 percent of the population utilise the Ministry of Health or Ministry of Education hospitals or healthcare facilities, it makes sense to ensure that the best possible treatment is made available at those points. The reality can be very different.

The past decade has seen new and remarkable developments in cell-based and antibody therapies, and innovative technologies in imaging for early detection, diagnosis and treatment of cancer. However, most remain out of reach of those accessing public healthcare.

There are many reasons for this. The lack of sufficient funds is commonly cited. However, in a few instances, the medical equipment was actually acquired and available but the investment in training technicians was not made. So the devices sit there untouched.

There has also been much frustration in the area of cancer treatment. Targeted therapies, considered to be the “smart bombs” in oncology, have been available for more than a decade, yet remain mostly unavailable to patients in public healthcare.

Deemed as having marginal benefits and costly, these medicines are often considered to be less cost effective and unattractive for inclusion into the Ministry of Health’s Medicines Formulary.

Marginal benefits. Tell that to the mother who wants to live one more month to see her daughter get married. To the proud grandfather who wants to live long enough to see his grandson graduate and become the first in the family to have a degree. To the person who wants to live long enough to make sure that the housing and car loans are paid off so that her family won’t be burdened by her passing.

These are real stories of people with cancer fighting to live.

Yet it can be disheartening for patient advocates fighting for increase in access to innovative drugs for a chance to extend their life or a higher quality of life, to instead be asked indignantly whether they are in the pockets of big pharma.

The exhaustion I hear in their voices, make it seem that a lot more effort and energy are expanded on fighting or negotiating with the gatekeepers of healthcare rather than on cancer itself.

Malaysia prides itself on being an upper middle income country on track towards achieving developed nation status. This year’s projections put us at an estimated GDP per capita of USD $30 858 with a growth rate of 5.4 percent. Malaysia is the third wealthiest country in Southeast Asia after Singapore and Brunei.

Therefore the conversation regarding preventing, diagnosing and treating cancer. shouldn’t be that we can’t afford to provide the best possible quality of care, but how we can work towards ensuring that we provide it to the people who need.

The pharmaceutical industry must also do its part by meeting the challenge of ensuring fair and reasonable prices for these innovative drugs. Far too many patients enter a Hobson’s choice where they must choose between exhausting their bank accounts, even at the risk of losing house and home, or going without potentially life-extending treatments.

The 142 page National Strategic Plan for Cancer Control Programme (2016 – 2020) provides a framework but we need to ensure support, sufficient funding and scale-up of programmes which emphasise on prevention and earlier diagnosis of cancer.

We must raise the urgency of the national response to cancer, with the same urgency we bring to the threats of infectious disease.

We need a sea-change in culture and mind-sets on how we treat cancer in Malaysia. Like the governance of this country, it cannot be business as usual.

Let’s commit to hard targets, hard numbers and most importantly figure out how to achieve them. Increasing existing treatment coverage and the quality of care available should not be described by mere words, rhetoric and grand announcements but by firm commitments from both the public and private sector. It should be backed by multi-year funding.

We need to improve outcomes, like cancer survival rates, so that they are among the best in the region.

We should be unwilling to postpone any longer, the things that we can do now to extend and save people’s lives.

We owe it to all who have lost their lives to cancer, and the courageous survivors who are still fighting it.

 

---

As published by Malay Mail on 3 August 2018.