“Cancer affects us all”, “cancer has touched every corner of our society” or “everyone knows someone with cancer” are familiar phrases which have become truisms for many of us.
It is estimated that more than 37,000 people would have been newly diagnosed with the disease last year. Many will be late-stage cancer. That number continues to grow as cancer becomes increasingly complex, with patients living with co-morbidities and with the consequences of a cancer diagnosis years after completion of treatment.
Often when patients get newly diagnosed with Stage 3 and Stage 4 cancer in our public hospitals, they are told that they have come too late. The lack of available treatment options means that they go home.
For those who can afford it, private hospitals offering cancer treatment are available, especially if you are in Peninsular Malaysia. But even then, the cost of the latest targeted therapy could be beyond the reach of affordability, diminishing insurance policies, wiping out savings and crippling household finances.
We are told many things: that a cancer diagnosis must mean the premature end of life. That surviving cancer is rare. That it is fate.
For thousands of Malaysians living with cancer, this is their story.
Despite having the resources and infrastructure of an upper middle-income country, Malaysia has one of the worst cancer survival rates in the region.
But it doesn’t have to be this way. A different outcome for cancer is possible. An outcome where we achieve a steady increase in survival rates due to better investments in research and treatment, and improvements in how we diagnose, treat and care for cancer.
Recently, the Cancer Care Working Group was privileged to host a briefing session with parliamentarians and state legislators from both sides of the aisle. The day wasn’t about politics but about people living with cancer, patients, survivors and the community of healthcare workers and carers who love and support them.
Working together with these legislators, we have the opportunity to change the Malaysian cancer story.
In any functioning democracy, legislators are positioned to influence the shape and content of public health agendas. They can lead the development of relevant legislation and policies, and monitor implementation. They have the potential to ensure oversight, accountability, transparency and good governance.
Legislators help define the fiscal and budgetary frameworks needed to mobilise sufficient resources. Most importantly, legislators are tasked to hear and amplify the voices of citizens.
However, we need to do more than just share stories of diagnosis, treatment and survival.
We can change the Malaysian cancer landscape by having parliamentarians and members of the state legislature be involved in the monitoring of the National Strategic Action Plan for Cancer Control Programmes 2016–2020, currently the blueprint used to guide the government’s efforts to fight cancer. It should not be the health minister’s burden alone. He and his team need all the support they can get on this issue. This is one way to get it.
To start off, we can establish an all-party group on cancer in Parliament, similar to the one in the UK. This will allow MPs and other stakeholders to be engaged on the same platform without the limitations usually applicable to parliamentary select committees and caucuses.
We need to be able to answer simple questions such as, has the cancer survival rate improved over the past five years? Have patient outcomes improved during the same period? What will it take to improve patient access to new cancer drugs and treatments in our public healthcare system? It is insufficient for us to just know how many have died.
Comprehensive supportive care and allied health services are also critical factors in ensuring the best possible outcome from treatment. Yet, they remain under-invested. How we respond to cancer is beyond just building new hospitals. Survival rates are far more important.
There needs to be clarity on how much cancer funding has been made available to date and how much investment is actually needed to ensure the best possible outcomes. In general, there needs to be better oversight and transparency on how the cancer strategy is being delivered, what the priorities are, and who is responsible for delivering the results of the strategy.
An all-party group on cancer can help obtain answers to such questions without having to wait for or solely depend on parliamentary questions. It can constructively enhance the existing response and bring to attention the resources and political will needed to ensure that the health ministry and other relevant ministries and departments are able to get what they need. After all, cancer has touched so many, including politicians.
Significant gaps in Malaysia’s response to cancer care continue to exist but we can do better.
As we commemorate those fighting, living with and surviving cancer, we honour those who lost their lives to the disease. We recognise their loved ones who have stood or are standing by their side.
People living with and beyond cancer can get the care and support they need to lead as healthy and active a life as possible, for as long as possible.
This World Cancer Day, it cannot be business as usual. The story must change. Our members of Parliament and state legislators can help do that. This is what they can do today.
Azrul Mohd Khalib is founder and chief executive of the Galen Centre for Health and Social Policy, which is the secretariat for The Working Group.
The views expressed are those of the author and do not necessarily reflect those of FMT.