Cancer in My Community is a Cancer.Net Blog series that shows the global impact of cancer and how people work to care for those with cancer in their region. Mastura Md Yusof, MBBS, MCO, AM, is a consultant clinical oncologist at both the Pantai Hospital Kuala Lumpur in Kuala Lumpur, Malaysia, and the Subang Jaya Medical Centre in Subang Jaya, Malaysia. She divides her time between her active clinical work, research, and teaching and champions cancer awareness, literacy, early diagnosis, access, treatment advances, and improving cancer outcomes at all levels. Wan Zamaniah Wan Ishak, MBBS, MCO, is a consultant clinical oncologist in the Clinical Oncology Unit in the Faculty of Medicine at the University of Malaya in Kuala Lumpur, Malaysia. She serves as a lecturer, researcher, and clinician in the Faculty of Medicine at the University of Malaya. View Dr. Mastura Md Yusof’s disclosures. View Dr. Wan Zamaniah Wan Ishak’s disclosures.

Why we care for people with cancer

We both grew up in the late 1970s and 1980s when Malaysia’s economic growth began. This rapid growth and a transition to a more urban lifestyle led to significant health and lifestyle changes throughout the country. These changes, in turn, led to an increased prevalence of cancer in Malaysia, which we deal with every day as practicing oncologists.

The oncology field is relatively new compared to other disciplines in Malaysia, and oncologists are only available in big general hospitals or in private facilities in major cities in our country. Nonetheless, it is a rapidly expanding field. We are proud to have observed a growing number of early cancer diagnoses as opposed to diagnoses at an advanced stage. We have also seen increased cure rates and better long-term cancer control in people with cancer. These outcomes give us great job satisfaction and motivates us to pursue further progress. 

As oncologists today, we love the opportunity to take charge and address the challenges of managing cancer. We hope that we can help change the outlook of cancer in Malaysia and empower the public to be more proactive in maintaining a healthy lifestyle. We look forward to continuing the growth of cancer prevention and early diagnosis measures in our country and furthering personalized cancer treatment.

What the cancer experience is like in Malaysia

Malaysia is a beautiful country consisting of 13 states and 3 federal territories. It houses nearly 33 million multi-ethnic, multi-religious populations with varying socioeconomic backgrounds. The 3 main ethnic groups in Malaysia are Malay (69.1%), Chinese (23.0%), and Indian (6.9%), according to the Department of Statistics Malaysia. Each ethnic group has its own heritage, culture, and traditions that have a strong influence over the lifestyle choices and habits common in each group, including around hygiene, diet, smoking, alcohol use, and environmental exposures. These lifestyle factors, in turn, have different links to cancer development and impact each community’s attitude toward cancer and its treatment. According to a study in BMC Public Health, the burden of cancer in Malaysia is influenced by certain risk factors that, if changed, may prevent the development of many cancers, including lifestyle factors like excess weight, alcohol intake, physical inactivity, and smoking.

Overall, there were 48,639 new cancer cases recorded in Malaysia last year, according to the World Health Organization, and the cancer incidence in Malaysia is expected to double by 2040. There was an 11% increase in new cancer cases and nearly 30% more deaths from cancer reported in the 2012–2016 Malaysia National Cancer Registry Report compared to the 2007–2011 report. The rising number of cancer cases will become a major health issue as the growing cancer burden continues to put tremendous physical, emotional, and financial strain on people with cancer, communities, and the country’s health care system.

The most common cancers in Malaysia are breast cancer, followed by colorectal cancer, lung cancer, nasopharyngeal cancer, and liver cancer, according to the World Health Organization. Breast, colorectal, and lung cancers make up about half of the total cancer cases reported by the Malaysia National Cancer Registry. Both breast cancer and cervical cancer are among the leading causes of death for Malaysian women with cancer.

Screening for breast, cervical, colorectal, and prostate cancers is available in Malaysia, although the number of people who regularly get screened is far from satisfactory. A lack of knowledge around the various cancer screening methods, cultural attitudes, and a lack of encouragement by family members and family doctors are among the major reasons for the poor response to cancer screening.

While Malaysia is an upper-middle-income country with a strong health-care system and good socioeconomic programs, cancer survival rates in Malaysia are still below the average rate of developed countries. This is due to a variety of barriers faced by people with cancer, including low cancer awareness and screening rates, delays in seeking medical care, delays in detection and diagnosis, and inadequate access to quality care. These barriers are especially prevalent for people who live in rural areas, as cancer centers are mainly found only in major cities. At least 3 states—Perlis, Pahang, and Terengganu—do not have any cancer centers, and traveling to a cancer center in a major city can take anywhere from several hours to half a day, if not longer. Some people with cancer do not have the means to reach these centers and may die without receiving any cancer treatment. 

Furthermore, cancer is a disease that many Malaysians fear, but the general public’s awareness and knowledge about the signs and symptoms of common cancers is still poor. In fact, some Malaysians still view a cancer diagnosis as “receiving the death penalty,” despite the disease being treatable. There are also many traditional healers and health practitioners in Malaysia offering alternative therapies to standard-of-care medicine for people with cancer. The internet and uncontrolled social media advertisements have allowed some unapproved practices to flourish, which has contributed to a delay in people seeking standard cancer treatment. Overall, avoiding diagnosis and treatment or seeking alternative therapies are common practices in Malaysia, which further contributes to poor survival outcomes.

How people with cancer receive care in Malaysia

Because of the high cost of medical treatment, Malaysia has yet to realize its goal of providing universal health care to all Malaysians and instead provides services through a dual public and private health care system. The Ministry of Health (MoH) runs the public health care facilities and provides heavily subsidized services to the public with occasional small co-payments for some specialized services. There are currently 6 MoH hospitals, 5 university hospitals, and at least 44 private hospitals with cancer facilities in Malaysia.

Overall, there are slightly more than 150 practicing oncologists in our country. Although the ratio of about 1 oncologist per every 220,000 individuals is still considered far from ideal, the number of oncologists has tripled in the last 20 years. The number of specialty surgeons, molecular laboratories, centers offering oncology and radiotherapy services, and non-governmental organizations (NGOs) championing cancer care and advocacy has also increased in tandem with this favorable trend.

Almost all of the state-of-the-art cancer treatments and equipment, like radiation therapy, immunotherapy, targeted therapy, and others, are available in Malaysia. Clinical trials are also available to people with cancer in Malaysia. However, there is often a fear of seeking treatment despite the rapid advances in cancer research and treatment. This fear exists for various reasons, including concerns about facing disability, treatment-related side effects, societal stigma, reduced body image, financial toll, and death.

Approximately 65% of Malaysians seek health care services in public facilities, which have overworked staff, less equipment, and long waiting lists. Due to limited resources, the public hospitals typically offer only the most basic cancer treatments, as newer or more expensive treatments like targeted therapies and immunotherapies are not reimbursed by the government. Private facilities are better equipped with shorter waiting lists, but they are expensive and unaffordable to many.

How the Malaysian government is working to improve access to cancer care

2023 will mark the 20^th anniversary of Malaysia’s National Cancer Control Plan, which implemented policies in cancer prevention, screening, early detection, treatment, and palliative care across the country. It began with introducing cost-effective preventive approaches to encourage people to make lifestyle changes and reduce their cancer risk. The MoH also issued a policy to provide screening for breast, cervical, and colorectal cancers in health clinics, which improved access to cancer screening and helped lead to more timely treatment.

Despite these positive changes, there remains a gap in the financial burden and accessibility of cancer care in Malaysia. The National Strategic Plan for Cancer Control Programme was created in 2016 to put a bigger emphasis on improving access to cancer care, diagnosis, treatment, and research. The government is also working to increase access to drugs by making them more affordable to patients, and oncologists have started to travel to hospitals in states that don’t have oncology services to lend their expertise and reduce the waiting times for people with cancer in those areas. Finally, Clinical Research Malaysia was established in 2012 by the government to help clinicians in the country conduct impactful research and collaborate with top scientists around the world to bring innovative treatments to people with cancer in Malaysia.

Where people with cancer can find local resources and support in Malaysia

Malaysia has many resources available to people with cancer that have made a valuable difference to thousands of people with cancer and their families. To start, the Social Security Organisation (SOCSO) provides social security protection to employees and their dependents through the Employment Injury Scheme and the Invalidity Scheme. It helps by providing screening vouchers, pensions, rehabilitation services, and financial aid to employees facing cancer.

There are also several NGOs in Malaysia that help people with cancer:

• Breast Cancer Welfare Association (BCWA). BCWA is an NGO that has provided support to people with breast cancer for more than 30 years. It collaborates with various international organizations and provides educational resources to teach the Malaysian public about breast cancer.

• Majlis Kanser Nasional (MAKNA). MAKNA provides financial, emotional, physical, and educational support to any person with cancer that comes their way.

• National Cancer Society of Malaysia (Persatuan Kanser Kebangsaan Malaysia) (NCSM). NCSM is the first not-for-profit cancer organization in Malaysia that provides education, care, and support services to people affected by cancer. NCSM has its own center that provides counseling and screening programs, as well as some cancer medications at cheaper costs.

• Together Against Cancer Association Malaysia (TAC). TAC is made up of health care providers and other NGOs that work to provide a unified voice for all people with cancer in Malaysia. They aim to improve access to high-quality health care in Malaysia through health policy and legislative reform. TAC is actively promoting cancer education, awareness, and support, and they coordinate with policymakers to allocate resources equitably.

• Zakat. Zakat is an Islamic financial organization available to Muslims in Malaysia that contributes to charitable causes each year, including to help people with cancer. Zakat is a form of worship in which Muslims donate a certain amount of their wealth each year.

There are many more advocacy associations available in Malaysia for people with cancer to reach out to for more information on cancer, including for prevention, screening, treatment, and support. The number of associations is only going to continue to grow as cancer literacy improves throughout Malaysia.