Patients must continue to be at the centre of policy-making which directly affects them.
The World Cancer Congress 2018 is ongoing this week with thousands of delegates from around the world converging in Kuala Lumpur to discuss the global response to cancer.
Cancer is the 4th most common cause of death in Malaysia, with approximately 37,000 cases of cancer reported every year and estimated to rise to more than 55,000 newly diagnosed cases by 2030. It is responsible for 12.6% of all deaths in government hospitals and 26.7% in private hospitals.
The data and findings from the Ministry of Health’s Malaysian Study on Cancer Survival (MySCan) which was released at the conference, make for grim reading.
The first population-based cancer survival report in the country aimed to help guide the development of cancer control strategies, it describes poor survival rates of patients who presented late for treatment, specifically at Stage 3 and 4.
Despite existing screening facilities and programmes, those with breast, cervical and colorectal cancers were coming forward late at 41.3%, 38.5% and 63.8% respectively.
Within the period of the report, around 43% of women diagnosed with breast cancer died, for individuals with cervical cancer it was 56%, and 52% for those with ovarian cancer. Nine out of ten lung cancer patients did not make it. Gastrointestinal cancers have an average survival rate of less than 40%. Those of the nasopharynx, which Lee Chong Wei is currently battling, also had a similar number.
With such data, it is not surprising that Malaysia has one of the highest mortality to incidence ratio for breast cancer in the Southeast Asian region.
Besides late presentation of disease, insufficient facilities and specialists (particularly outside urban areas), lack of access to innovative surgical, radiotherapeutic and oncological treatments, contributed towards this sad state of affairs. Compounding these factors are complications caused by financial catastrophe and the lack of allied health professional networks.
Knowing all this, I am reminded of what Dr. Princess Nothemba Simelela from the World Health Organisation said at the World Cancer Leaders’ Summit held the day before the Congress: “we need to be a bit more angry that so little has changed and we need to be more impatient.”
It is a terrible thing for patients to hear and told that they have to be patient and to wait until their treatment becomes available. Perhaps they need to be impatient, as Dr. Simelela said, to stand up and be more outspoken and vocal in order for their views to be taken seriously and for them to have a say in the availability and quality of treatment and care.
It is in that spirit that during the pre-Congress event “Advancing an agenda of hope and action on cancer in Malaysia” jointly organized by Galen Centre for Health & Social Policy and the National Cancer Society Malaysia, a series of concrete, short-term and long-term policy recommendations for Members of Parliamentarians and policy makers was launched.
Developed by Malaysian cancer patients, these recommendations are intended to draw attention of policymakers to take heed and seriously respond to specific challenges which affect cancer treatment and care in the country.
Five short-term recommendations which can be achieved with minimal effort were highlighted as low hanging fruit for the new government to take advantage to demonstrate its ability to start delivering on the promises of increasing the quality and depth of existing healthcare services.
These include removal of dual referral charges at public hospitals, standardization of treatment fees across public healthcare, improving the quality and availability of national cancer data, and providing support to lower-income B40 patients through integration of cancer screening and diagnosis as part of the Skim Peduli Sihat initiative.
There were eight long-term recommendations which require greater institutional reforms to policies, strategies and services on cancer care. These included ensuring stronger and improved government accountability of the national cancer strategy, establishing multi-sectoral consultative and partnership mechanisms, adopting sustainable healthcare financing strategies, reforming Social Security Organisation (SOCSO) legislation and regulations relating to cancer, improving public drug procurement policies to respond better to advances in cancer treatment, and establishment of cancer survivorship services as part of cancer care.
To help realise these recommendations, The Cancer Care Working Group was launched as a new cancer advocacy initiative comprising patients, cancer specialists, health professionals and cancer advocates. They currently work in a number of related areas including health service delivery, research, prevention, information and support, care and treatment, and patient involvement.
Together, The Cancer Care Working Group aims to help influence public policies to improve outcomes, treatment and care of cancer in Malaysia. It will work towards enhancing and adding value to the government’s implementation of the National Strategic Plan for Cancer Control Programme (2016 – 2020), and campaign for action, improvements and change in cancer policy.
Most importantly, it aims to promote the voices of patients and their empowerment and meaningful participation in public policy consultations and discussions. Patients must continue to be at the centre of policy-making which directly affects them.
Perhaps with the strength of their voices, the current situation can change for the better so that more people with cancer can move from always hoping to living.