Cross-boundary Cancer Studies
Surviving Cancer in Asia
Cross-boundary Cancer Studies
Surviving Cancer in Asia
The 8th lecture in the series was held on January 11 2024. Please refer to the following for the speaker's profile and lecture summary.
TITLE
SPEAKER
Saunthari Somasundaram
President, National Cancer Society of Malaysia (NCSM)
SUMMARY
(1) Introduction
SONODA Shigeto welcomed participants to the lecture and asked KAWAHARA Norie to introduce the speaker. Dr. Kawahara introduced Dr. Saunthari Somasundaram, President of National Cancer Society of Malaysia (NCSM), who is at the forefront of Malaysia's cancer care, striving for universal health coverage (UHC) through her work at NCSM. As a fellow member of UICC, she shares the mission of the Asia Cancer Forum (ACF). Dr. Kawahara noted how Japan and Malaysia may share a continent, but their culture, history, and social systems are quite distinct. Despite these differences, the core of any international project lies in the trust between people, and it is this trust with Dr. Somasundaram that has helped to overcome numerous challenges. The key to sustainability often lies more in human elements than in systems. In last year’s lecture Dr. Somasundaram spoke about the healthcare gap between public and private sectors in Malaysia. This year’s lecture will build on last year’s lecture, with a focus on engaging with the private sector in efforts to bridge the urban-rural divide.
Dr. Kawahara noted that Dr. Jason Chin Yu Aun, Medical Officer, NCSM would also be giving a talk about efforts to bridge gaps between urban and rural areas in cancer care.
(2) What is medical disparity?
Dr. Somasundaram noted that the simplest definition of medical disparity is differences in and/or gaps in the equality in health and health care across racial, ethnic, and socioeconomic groups.
It can also be understood as population-specific differences in the presence of disease, health outcomes, or access to health care. So how does the urban rural divide then manifest itself? Firstly, it’s a system-wide disparity where there are vast differences in terms of medical service provisions from the hardware to the personnel and resources. This leads to differences in personnel expertise, in terms of the training, as well as treatment availability and options for patients. For the patients themselves, there is a very large difference between the urban perception of cancer and the health-seeking behavior of patients compared to that of the rural population. All this leads to differences in outcomes in screening, diagnosis, and treatment.
(3) Overview of healthcare system in Malaysia
The healthcare system in Malaysia is divided into two distinctly separate sectors: the public sector, which is tax funded, and the private sector, which is funded by private insurance and out-of-pocket payments (OOP). The public sector is further divided into hospitals which are Ministry of Health Hospitals, as well as Ministry of Education Hospitals, which are university hospitals. On top of these there are private sector hospitals. The total expenditure by health is still very low in Malaysia, with 38% of all payments still being accounted for by OOP.
In terms of medical disparity in cancer care, a major white paper was introduced in 2022. This white paper highlighted the fact that there are only 36 cancer centers in Malaysia, and there are certain states in Malaysia (Terengganu and Perlis) where there were no treatment centers, as of 2022. The Ministry of Health does not have a cancer center on the north and east coast of Peninsular Malaysia. Cancer patients on the east coast have to travel several hundred kilometers for treatment.
The population of Malaysia is roughly about 33 million now, comprising 75% living in urban areas, and 24% in rural areas. The fourth National Physical Plan aims to realize an urbanization rate of 85% by 2040, and many states have already reached that level. There are about six states in Malaysia, which have rural populations accounting for approximately one-third of all residents. These states are also already seeing populations starting to age.
In terms of comprehensive oncology centers in Malaysia, there are a total of 36, of which only seven are government centers. There are several states in Malaysia where cancer care is very sparse. For example, in Sabah and Sarawak, there are just two public hospitals and two private hospitals for a population of six million people. This means that people living in East Malaysia have little or no access to oncology or radiotherapy services.
There are also areas where the urban population is also not well resourced, such as Perlis and Terengganu. Although the government is currently working to ensure that every state has a center capable of providing chemotherapy services, these services will be provided by general physicians, rather than oncologists, due to a lack of trained oncologists.
Although the service is under-resourced, the major of citizens (up to 65%) opt for the public sector service as it is highly subsidized. This means that two in three cancer patients are generally managed in public hospitals. But as stated above the healthcare delivery service is not evenly distributed. Even the great majority of private health care services are concentrated in urban and high density areas, where they again consist of groups of the highest socioeconomic status who are able to afford private care. There is little incentive for private providers to open services in rural areas, where people have lower socioeconomic status. One example of this urban-rural disparity is that 45.6% of rural clinics in Sarawak are managed by medical assistants and nurses, and do not have a resident doctor.
The WHO recommends that there are 10 oncology specialists per million population in a country. However, in Malaysia that figure is 3.6 radiologists and oncologists per million, with 42% working in public and university hospitals, and 58% working in the private sector.
This is a woeful number of oncologists available to treat patients, particularly in the public sector, and many of the oncologists in the country are located in the Klang Valley, in the region of the capital city, Kuala Lumpur and Putrajaya. Penang is also another region that is relatively well resourced.
(4) Determinants of disparity
In terms of the rural-urban disparity in survival, low socioeconomic status makes a huge impact. It feeds into the whole idea of low health literacy, which also impacts health behavior.
Figure 1: Overview of the Malaysia healthcare system
Also, people in the lowest socioeconomic stratum are unlikely to have the financial coverage to be able to afford treatment of cancer, or even diagnosis of your cancers.
In terms of accessibility, a 2011 study reported that only about 69% of those in rural areas live within three kilometers of clinics or other (often small) health care facilities, whereas 92% of urban residents are within three kilometers of any facility (Jaafar et al., 2012). Not only are those in rural areas farther away from any sort of health care facilities, but also the terrain makes it more difficult to reach those facilities. Similarly, a study from the Ministry of Health found that the average time to reach a hospital for rural residents was 43 minutes compared to 28 minutes for urban residents. So in terms of cancers that can be treated and have better outcomes with radiotherapy, many patients who live more than a hundred kilometers away from the radiotherapy services are unable to access these services, ultimately impacting survival outcomes.
With regard, therefore, to service delivery, basic diagnostic procedures are physically inaccessible for many patients, especially those residing in geographically isolated areas. There is also a lack of trained healthcare workers to operate devices and difficulties in maintaining competencies in resource constrained areas need to be addressed to bridge the gap in diagnostics. There is also a lack of access to replacement parts, and intermittent electricity supply to recharge batteries in rural areas.
In terms of disease outcomes, a study was implemented between colorectal cancer patients in Kuala Lumpur, and Sarawak, which showed that patients in the urban area had a significantly higher five-year survival rate compared to the rural hospital. One of the factors affecting outcomes is that there are no colorectal trained specialists in rural hospitals, so all surgeries are done by general surgeons, many of whom are junior. The lack of radiotherapy is also another issue. Also, socioeconomic status influences the stage at which a patient will present for screening and diagnosis, which ultimately impacts survival.
There are also disparities along religious and ethnic lines. This may be due to preferences for traditional medicine or faith healers compared to modern medicine and cancer therapy. This impacts greatly on the health literacy and the health seeking behavior. In Malaysia, there is a great difference between the health seeking behavior of the various ethnic and religious groups. There is also stigma, fear, and mistrust of the health care service, especially conventional therapies or westernized therapies, among those who prefer traditional medicine.
Figure 2: Disparities along religious and ethnic lines
Financial toxicity is another grave challenge for cancer treatment and care. Once diagnosed with cancer, patients often face a long and arduous journey to access care, begin and complete treatment, and adapt to survivorship.
In terms of insurance, only 22 percent of Malaysians are covered by at least one type of health insurance. Unfortunately, this is even less in rural areas. It is interesting to note that there are also barriers to government financial support as it is hard to navigate the various systems, although moves are underway to incentivize lower income groups to complete their treatment.
In terms of social impact, cancer patients experience loss of income and productivity, limits to their daily activities, and cost in time and transportation to need access regular medical care. Of course their families also face financial struggles. On top of financial travel challenges patients and their families also have to navigate the cancer care pathway from screening, diagnosis, treatment, and supportive care. This pathway is often fraught with logistical information and emotional and system barriers. This can be even more challenging in a rural area, as facilities are further away from one another, creating an additional burden.
In terms of economic impact, in 2017 Disability Adjusted Life Year (DALY) losses from cancer in Malaysia were estimated to be about 30 billion ringgit, or 2.2% of nominal GDP. A large proportion of cancer patients are also diagnosed during their most productive and economically active ages. This highly affects the economic productivity of a country. Many employed individuals are unable to continue working due to prolonged work absence, lack of workplace flexibility, and reduced productivity while going through treatment. Regardless of initial socioeconomic status, loss of income and unemployment after a cancer diagnosis are major causes of financial hardship. The choices are often stark: stay home and retain your job or get treated and lose at least several days’ worth of wages or even become unemployed
(5) Snapshot on breast cancer: Impact on healthcare and cancer treatment
There is an ideal model for a breast cancer pathway, where the average time from initial symptoms to treatment is about 30 days. The reality in Malaysia according is that time from the presentation interval to the diagnostic interval to the treatment interval can be anything from one month to 10 years.
Poor uptake of mammography screening and delayed presentation in rural areas can be attributed again to poor knowledge of cancer, fear of the consequences of cancer, belief in the complementary or alternative medicines, and needing support of others. A lack of family support for women makes a huge difference, and a lack of information, scant provision of financial and logistic support to access healthcare facilities, and little emotional support may hinder uptake of screening and treatment. Family support is especially influential in localities where there's strong cultural norms of firm family reliance, especially the authority of men to make medical decisions in the household.
There are significant disparities in mammogram uptake across urban and rural states, from 5.5% in rural areas to 31.3% in urban areas. Diagnosis of breast cancer tends to be at the most productive and economically active ages and competing priorities of work and family may hinder early diagnosis. This is also one of the factors that contributes to poor survival rates. Malaysia compares poorly to other in terms of diagnosis of breast cancer and survival rates.
In terms of the diagnostic interval for breast cancer, once again there is a wide range, and this breadth is due to various factors, including lack of education of primary healthcare works, lack of clinical breast examination (CBE) skills, delays in recall, and a complicated referral system. There have also been serious delays in call and recall of cancer screening. In one study, only 6.7% of newly diagnosed breast cancer patients received their diagnosis within one month. 45.5% were notified more than 6 months after consultations.
In terms of the treatment interval, the main treatment modalities are surgery, radiotherapy, chemotherapy, hormonal therapy, and targeted biological treatments. There is a wide spectrum of barriers to these treatments, including geographical availability, timely access to optimum treatment and clinical care, and the wide variations in treatment seeking behavior among patients. There is also a lack of guidance as well regarding connectivity and patient healthcare pathways between health facilities.
In order to move towards the realization of an ideal breast care model, some action points to consider are: 1) public-private partnerships, 2) value-based medicine frameworks, and 3) mainstream patient navigation and psychosocial support.
There is a huge need to facilitate public-private partnerships to increase capacity and optimize services at every stage. There needs to be lower barriers to accessing cancer care and private healthcare facilities so that services can be provided in a timely manner. Many private hospitals that are in lesser populated areas have got the capacity, the equipment, and the expertise, and they are being underutilized.
We also need to look at value-based medicine in order to provide consistent high quality cancer care. Higher spending alone does not always correlate with better outcomes. There's always misalignments in costing priorities, wastages, and inefficiencies. Advances in diagnosis and treatment have generally improved survival rates. However, challenges revolve around affordability and if they are cost effective. It is therefore important to adopt a patient-centric framework to determine and assess value and identify best practice care pathways, and prioritize value rather than volume of care.
We have to increase our survivorship numbers, and in terms of the mental health of patients, mainstreaming patient navigation and psychosocial support will make a huge difference in terms of compliance. We know from previous studies done by Cancer Research Malaysia that they were able to decrease attrition rates in terms of treatment through navigation from over 40 percent to down to less than 10%. So ensuring that there are facilities out there that can actually assist with patient navigation and psychosocial support will make a huge difference to compliance and attrition rates in terms of cancer patients, especially in the rural areas where health literacy and health-seeking behavior is low.
In conclusion, healthcare in Malaysia is vastly different for the urban and rural areas. Gaps exist within the country infrastructure, medical landscape, and also within patient sociocultural norms and health-seeking behaviors.
Addressing medical disparity in cancer treatment requires a multifaceted approach, and we need to collaborate on efforts that can help increase equitable access to quality care, promoting better health outcomes for all.
(6) Discussion
Dr. Sonoda asked whether the disparities in cancer care in Malaysia are diminishing or growing and asked what measures the Malaysian government is taking.
Dr. Somasundaram responded that although there are no specific figures on the trends in disparities, the general feeling in the country is that there are positive changes in patient health-seeking behavior, part of which is thanks to NGOs doing a great deal of health promotion work. The government is also working to increase the number of primary health care workers capable of diagnosing cancer, and improve the availability of treatments closer to home. There has been better uptake of chemotherapy when it has been provided in secondary hospitals, and not just tertiary hospitals. Attrition rates are also improving as more people choose to stay on their treatment program.
In terms of measures being taken by the government, Dr. Somasundaram noted that there has been a frequent change of governments in the past few years, which has impacted political will relating to cancer. The current government has yet to make any concrete moves relating to cancer. She noted that many of the challenges relating to health in general and cancer in particular relate to finances. It is no longer possible to work in silos, and it is imperative to look at the totality in terms of health. We have to make efforts to work in a more interdisciplinary manner.
Dr. Sonoda noted that the focus of the seminar series is on an interdisciplinary approach to tackling cancer. He noted, however, that action rather than words may be difficult to achieve.
Dr. Somasundaram noted that if progress can be shown in a certain area, such as screening and detection, and people can see that progress, it will be viewed positively and help to make a difference going forward. We do a breast cancer screening program in Malaysia, which has seen a change in terms of the number of people getting screened for breast cancer. NCSM has also implemented a navigation program that trains cancer patients or survivors to go out there and talk and interact with newly diagnosed cancer patients. It is efforts like this that helps to change perceptions.
The Medical Disparity between Rural and Urban Areas in Cancer Treatment in Malaysia: What is being done to bridge the gap? (Jason Chin Yu Aun, Medical Officer & Community Health, NCSM)
Jason CHIN referred to the social determinants of health, noting that in relation these social determinants the government of Malaysia has formulated a National Strategic Plan for Cancer Control (2021-2025), the objectives of which are to reduce the negative impact of cancer, improve quality of life, down-stage cancer at diagnosis, reduce the premature mortality due to cancer, and address cancer prevention and control from a holistic viewpoint. The plan has 10 focus areas: Prevention and Health Promotion, Screening and Early Diagnosis, Diagnosis, Treatment, Survivorship, Palliative Care, Traditional and Complementary Medicine, Research and Development, Monitoring and Surveillance, and Human Capacity Building and Development.
In terms of disparities between urban and rural areas, the key areas that require attention are: prevention and health promotion, screening and early diagnosis, survivorship, and human capacity building and development.
In terms of prevention and health promotion, the government has been engaging in online talks, providing information to the public about cancer and cancer control. One of these educational and information programs in the Bringing Education and Understanding To You (BEAUTY) and Health Project, which is a collaborative project between NCSM, the Asia Cancer Forum, and Astellas Pharma Inc. This project is based in community barbershops and beauty salons in Malaysia for screen-able male and female cancers and other noncommunicable diseases.
Another program is “Leaving No-one Behind” that is a collaborative project between the private, government and NGO sectors, with the aim of ensuring that all eligible people can receive the HPV vaccine across the country.
With regard to efforts to improve screening and early diagnosis, the government has been promoting the utilization of mobile health clinics, with the aim of covering populations that public sector hospitals cannot reach. These mobile clinics were first initiated in 2009. KOSPEN is a program that the government has rolled out to empower the local communities to do screening for their own communities.
NCSM’s role in addressing disparities is to promote early screening and early diagnosis, provide education, care and support, with the aim of ensuring that no-one is left behind.
Another way of reducing disparities is through the use of telemedicine, which can connect patients to specialists, who are not always available in medical clinics.
There is a common theme with all of these initiatives in that the future of Malaysian healthcare is not just a government-public endeavor, it is going to be a government-private-NGO collaboration. It is vital for all sectors to work together to make sure that urban and rural disparities can be overcome.
NCSM also provides the Cancer Information Service (CIS), which provides information about cancer over the telephone.
Another example of a private-government-NGO partnership program is the ETIQA mammogram screening program, which began in 2017 to provide free mammograms to women in low-income households. NCSM partners with 14 private hospitals in Peninsular Malaysia to provide this program.
Patient support groups are also essential to support private-public and NGO initiatives.
In terms of human capacity building and development, NCSM provides guided patient support (GPS) and patient navigators proactively provide guidance, match unmet needs to appropriate resources, and improve access, and promote integration of care. Patient navigation helps to improve treatment default rates and support patients on their cancer journey.
Discussion
Dr. Sonoda referred to the ETIQA free mammogram program in Malaysia, noting that intersectoral collaboration can be difficult to achieve. He asked about the efforts that NCSM has had to make to bring the various actors together.
Dr. Chin noted that the government is very often limited due to budgetary constraints. Also, it can be difficult for the government to engage with the private or NGO sector, due to bureaucracy and red tape. It is important for NGOs and the private sector to leverage their staff and volunteers to support collaborations and ensure their success.
Dr. Sonoda noted that it is also important to ensure engagement among all participants, for which people with outgoing and engaging personalities are often an important asset. Dr. Chin agreed that outgoing and engaging personalities can improve the effect and success of a project.
Dr. Kawahara thanked Dr. Somasundaram and Dr. Chin for their presentations, noting that in the Japanese language series of lectures the key topic for the series concerns regional disparities within Japan. The challenges faced in Japan’s rural areas can also provide reference for other parts of Asia. It is hoped that through the lecture series the participants can come to understand perspectives that Western values may not capture. Dr. Kawahara noted that the next lecture would be made by representatives of Astellas Pharma, a key partner in the BEAUTY and Health Project.