Amira (name changed for privacy reasons) is 11 years old. She was born with Tetralogy of Fallot, a complex congenital heart defect that won’t be fixed with a single surgery.
When she was an infant, her father’s employment insurance covered her first operation. Then coverage ran out.
She needed that second surgery and quickly: the risk of heart failure was imminent. Her father did what most families in this situation do: sought out help from charities, borrowed from friends and family, drained their retirement savings and started a crowdfunding campaign.
Her story is not unique: it is one of many playing out in Malaysia every year.
Malaysia’s health care system is in the middle of its most active reform debate in a generation. These debates discuss real problems and deserve the attention they are getting, but families like Amira’s are not present in the conversation. And without deliberate effort, they never will be.
The World Heart Federation recently released its first-ever report dedicated to congenital heart disease (CHD). CHD is among the most common birth defects globally, with an estimated 2.3 million infants born with a heart defect each year.
Yet, a staggering fact remains: globally, over 90 per cent of children are unable to access timely and appropriate care. Malaysia is not exempt from this burden, yet limited data on the national CHD population makes the actual burden of disease difficult to quantify.
Families of CHD patients live perpetually on the edge of catastrophic health expenditure. The treatment costs for congenital heart care are high. Complex, prolonged open-heart procedures, highly specialised medical teams and advanced life-support technology and long ICU stays are the driving factor behind this.
Costs can also escalate exponentially: some patients report costs ballooning up to RM200,000 as ICU stays lengthen or complications occur. The majority of these operations are heavily subsidised by the government health care budget.
Across a sample of recent cases this year (though a limited number), Yayasan Jantung Kongenital Malaysia found that the government subsidised as much as 90 per cent to as little as 20 per cent of the total costs. Zakat organisations, where possible, also play a crucial role in alleviating the financial burden.
But when government budgets tighten, the costs of this life-saving treatment fall directly onto families. Frantic families then reach out to NGOs in an effort to begin crowdfunding or ask for assistance.
As one of the organisations families turn to, we know the system from the inside – since January alone, we’ve channelled more than RM100,000 into funding congenital heart care.
Yet, crowdfunding can only be a stopgap measure: charity funding is unpredictable and unsustainable, and no substitute for a financing system built to expect these costs. More often than not, multiple NGOs chip in partial amounts to fund the treatment of one single patient.
In other words, these patients are caught in a pooling gap: their costs are expensive, so they are either excluded outright or priced out of private insurance.
The majority are dependent on a public funding pool that’s underfunded and then increasingly reliant on informal pools like NGOs that have no sustainable funding guarantee. Ultimately, this renders them invisible.
Closing that gap starts with two things. First, addressing the data gap on CHD’s true prevalence and cost burden. There is currently no national registry for congenital heart defect patients, which means financing decisions are being made without knowing the true national prevalence, outcomes, or cost burden of the disease.
But this isn’t just a data problem: it’s a visibility problem. Without a registry to make the case, CHD has no seat at the table when health policies are being written.
Secondly, the establishment of a national dedicated CHD Trust Fund (similar to that of the Malaysia Rare Disease Trust Fund) that pools resources specifically for CHD diagnosis and treatment, rather than leaving families exposed to annual budget cycles or discretionary charity.
The mechanisms for this will require further technical work, but the first step is naming CHD in the conversation at all. Until then, families are left to close that gap themselves.
No parent should have to crowdfund their child’s surgery. When they do, it is not a story about community generosity, it is a story about a system that failed to plan.
Amira, and children like her, deserve better than a system that only responds once a family has run out of options. Let’s not forget the invisible child.
Hanis Syahira Hamdan is the Chief Operating Officer of Yayasan Jantung Kongenital Malaysia.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
