MALAYSIANSKINI | The big C, cancer, is often seen as a death sentence. One woman is attempting to change this reality.

For the past 14 years, Ong Mei Ching has dedicated her life to helping cancer patients, specifically those suffering from chronic myeloid leukaemia (CML), combat stigma and live a fulfilling life.

CML is a rare form of blood cancer that is not life-threatening if treated.

As the Asia Pacific head of US-based cancer charity The Max Foundation, she has helped thousands of CML patients in Malaysia obtain access to costly drugs for no charge at all through the Health Ministry’s Patient Assistance Programme (MYPAP).

The foundation helps link CML patients to a drug called Imatinib that is paid for by the MYPAP.

Medical care aside, Ong realised early on in her career that many patients grappled with similar emotional and psychological challenges as a result of their condition, but did so in isolation, which only exacerbated their problems.

She figured if she could bring together patients and experts in an informal setting, the quality of care would improve. Thus, in 2006, she pioneered the first CML patient support group.

“Our first meeting was just 10 people at Hospital Kuala Lumpur on a Saturday afternoon. There was no air conditioning, just a fan! But (it was helpful) to hear patients talk about their challenges and share information with the doctors who attended.

“Besides the drugs, patients need community in order to be able to live a normal life,” a jovial Ong told Malaysiakini when met at the Max Foundation office in Petaling Jaya recently.

Today, that patient support group has become Max Family, a registered society that organises gatherings where up to 70 CML patients at a time get to network, share experiences and learn about their condition from haematologists as well as from each other.

Held five times a year across different cities in the country, she says these gatherings have enabled patients to regain their confidence and empower themselves with information about their condition from experts.

As a result of these frequent meets, the CML patient community has also become very tight-knit and vibrant.

Now, Ong sees her role as a mere facilitator for these gatherings, and prefers to allow CML patients as well as their caregivers to take leadership roles to tailor these meets to their community’s needs.

She has since shifted her focus to address a persistent problem faced by CML and all other cancer patients - stigma.  

Last year, she led a team of global team of CML patients and volunteers to climb Mount Kinabalu precisely to shatter this stigma, as well as to raise funds for the Max Foundation.

Advocating good healthcare

Trained in nutrition and community health, Ong’s first job was, surprisingly, in public relations. But it was a short-lived affair.

Her subsequent entry into community work and healthcare was “unplanned,” and, as she told Malaysiakini, by accident.

“I had no idea what to do next (after resigning from her public relations job), but I knew a friend who was a nurse at Hospital Kuala Lumpur’s haematology department.

“She asked me one day to come help with filing forms, and that’s how I came in contact with patients who were under the care of the Max Foundation,” she recounted.

After working there for several months, Ong said, the foundation’s CEO contacted her with a job offer and she took it.

“I never expected I would be doing community work.

“I always say that it’s not that I sought after, but somehow it found me,” she said, chuckling.

Fourteen years on, Ong says she is proud to have helped significantly improve the quality of life for CML patients – not just in the country, but also in Thailand, Vietnam and the Philippines, where she oversees Max Foundation programmes.

“If we don’t advocate for a good healthcare system, who will?

“We need to show that people can live a good life even though they have CML as long as they get the proper care,” she said.

Moving forward, Ong plans to continue advocating for CML patients by pushing the government to strengthen its existing network of state and district hospitals to enable earlier diagnosis as well as more accessible CML treatment.

“CML is very manageable, but we need a system where patients can go to their nearby hospital to get tested and get drugs.

“Putting money into healthcare is not an expense, but an investment for the future,” she quipped. 

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