Cancer patients targeted by unscrupulous healers

KUALA LUMPUR - In 2007, Che Intan Mat Zain noticed that she had trouble walking. She would trip and fall even though there was nothing barring her way.

"I didn’t go to the hospital because I was afraid,” she told Bernama via WhatsApp.

Instead, she opted for a traditional Malay witch doctor or bomoh, who specialises in treating supernatural ailments, to cure her.

In the three years that ensued, the demands for ingredients to cure her mobility issues - caused by a "hantu” or ghost hanging around her legs causing her to trip - became more and more outlandish even as the cost for it grew astronomical.

Some of the items the bomoh asked for include the death shroud of a murder victim killed on a Tuesday and the heart of a songbird who died of heartbreak. And if she could not get the items, the witch doctor would offer to sell them to her for thousands of ringgit.

What she got instead was an epiphany.

"I went to see the doctor because I felt cheated and what he asked for was too weird,” said the 62-year old grandmother of two.

The doctor diagnosed her with brain cancer. The tumour in her brain had grown so large that it caused a stroke, resulting in loss of her eyesight and hearing in her left ear. Despite that, her doctor said she was lucky, and that she might not have survived if she had waited any longer to get surgery and treatment.

She wasn’t as lucky when it came to the bomoh, however. Although she finally stopped getting treatment from him, she had already spent around RM60,000 and sold her house to pay him. She, her husband and her 14 year-old son now live with her 86-year old mother in her tiny one-bedroom house in Pokok Sena, Kedah, sleeping in the living room.

Now she shares her story with other cancer patients in her support group Cancer Survivors Malaysia (CSM), warning them of the dangers of trusting unregistered traditional and alternative medicine practitioners to cure diseases like cancer, instead of going to the doctor first.

Founder and president of CSM Zuraini Kamal told Bernama she too fell prey to the false hope that many traditional and alternative medicine practitioners sell. She had spent almost RM100,000 on unsanctioned treatments.

"From the moment we’re diagnosed with cancer, we want to live. Whatever you sell, you tell us to eat, we will eat. All kinds of grass, all kinds of herbs, all kinds of tablets,” she said. She is now cancer-free.

She added it was important to protect cancer patients from those peddling so-called traditional or alternative cures, something that has been increasing in tandem with the growing popularity of traditional and alternative medicine.

Malaysia has laws and regulations to protect the public, with the enforcement of the Traditional and Complementary Medicine (TCM) Act of 2016 coming into effect at the end of the month (February), according to information on the Ministry of Health (MoH) website.

The act establishes a TCM Council to register practitioners, standardise practices and qualifications as well as allow prosecution for several violations of the act, such as failing to register. Prosecutable offences carry a prison sentence of up to two years’ imprisonment and a RM30,000 fine or both for a first offence, and up to three years’ prison and RM50,000 fine for subsequent offences.

But experts say the law is only as good as the people’s and the authorities’ willingness to wield it.

GOOD MEDICINE?

While traditional, complementary and alternative medicine (TCAM) has always been popular in Malaysia - it is a recognised branch of medicine under the Ministry of Health - it has gained wider acceptance nationally, regionally and globally over the years. As of 2015, there are 13,846 TCAM practitioners registered with the TCM Council.

The global dietary supplements market size is worth US$156.89 billion in 2022 and is expected to reach US$339.89 billion by 2032, according to an analysis by Emergen Research, published on Nov 30, 2023.

Health experts recognise TCAM for its holistic approach to promote health, prevent disease, and help the individual treat disturbances by regulating their physical, emotional, and mental aspects and living environment.

However, it should not take the place of conventional medical treatment, said Dr Cecilliann Veronica from SOL Integrative Wellness Centre, which provides complementary medicine treatments for cancer patients.

The functional medicine physician said their intent is to help and improve the function of the human body by integrating the worlds of conventional medicine and TCAM.

"There are patients who are doing the conventional treatment, like chemotherapy, radiotherapy, but at the same time, they are doing something else to support the body system, mainly the immune system and also to have a better quality of life. That is where I come in as a doctor to teach them,” she said.

She said the therapies they offer are evidence-based and concentrate on the whole body, by helping with dietary and lifestyle changes, such as stress management, to help cancer patients "thrive.”

Stress for example may have an indirect effect on cancer, by inhibiting a process called anoikis, which kills diseased cells and prevents them from spreading, according to Dr Anil K. Sood from Texas-based MD Anderson Cancer Centre at the University of Texas.

Experts say the problem is when TCAM practitioners, registered or not, offer their products as a way to cure or prevent cancer, as well as other diseases, without providing evidence to support the claim or telling people to stay with them exclusively - something experts hope the TCM Act will tackle.

DIFFERING STANDARDS

Experts posit that one of the reasons for patients’ naivete when it comes to some fraudulent TCAM practitioners is because the difference between conventional medicine and TCAM can be hard to understand.

For one thing, medical doctors and pharmaceutical companies are legally and ethically required to not over-promise or mislead patients.

"We tend to avoid using the word ‘cure’ because even at early Stage I or II (treatment), with an intention to cure, they may later relapse and come back, so we’re very, very careful about using the word ‘cure,’” said Dr Astrid Sinarti Hassan, medical ethicist, whose area of expertise includes oncology.

Under the TCM Act, TCAM practitioners are also prohibited from misleading or promising cures for diseases, like cancer. They are also required to receive relevant training at a school recognised by the Ministry of Health.

These requirements are not fully enforced at the moment, however.

While the regulations and standards for TCAM products and practitioners are welcome, they pale in contrast to the requirements medical doctors and pharmaceutical companies go through.

Medical education and training take years and specialising takes even more time. Throughout their careers, they are required to continue with education and keep up-to-date with the latest medical findings.

Other than that, pharmaceuticals undergo rigorous testing, with various phases going from the petri dish to animal trials and human trials, with consistent results, before getting approval for widespread sale and distribution. The whole process takes years and does not end with approval. Drugs are monitored for adverse effects for years.

In contrast, TCAM practitioners and products are not as restricted or regulated as medical doctors and pharmaceuticals.

Training for practitioners is usually shorter. And TCAM treatments and therapies undergo a less stringent process. Most studies on popular herbs in dietary supplements are usually only done in the lab without involving human trials.

"There (are few) efficacy studies on the supplements and therapies. And these people are (rarely) penalised,” said Dr Hafizah Zaharah Ahmad, consultant oncologist at Sunway Medical Centre Velocity.

WILLINGNESS TO REPORT

Experts agree that rogue TCAM practitioners have been getting away with it for years, due to lack of enforcement and laws. But it could also be the patients themselves.

"Patients are buying in because when we talk about traditional and alternative medicine, it’s the easy way out,” said Dr Astrid, who is also a medical lecturer at UiTM.

As such, she said it was important for patients to educate themselves, as well as family and friends. She and other experts said it was important for patients to involve their doctors in their medical decisions, especially if they chose to do TCAM.

Dr Astrid also said it was important for patients to know their rights under the law so that they will know when and if their rights have been infringed.

She added Malaysians needed to cultivate a culture of reporting violations, TCAM practitioners or otherwise. She said it would benefit society as a whole if people, especially victims, were more willing to report shady medical practitioners and treatments.

"Although MoH has the power to shut down (rogue practitioners), sometimes people get away because of very few complaints lodged. And they cannot enforce anything unless the complaint gets to them,” she said.

PS Ranjan, medical ethicist and lawyer, agrees. "If they think they’re not going to get caught, or get sued, they’ll continue.”

Ranjan said that the medico-legal field is still small in Malaysia. However, he expects the number to increase as people become more aware.

Both warned patients to seek treatment from registered practitioners only if they choose TCAM for their medical needs, as the TCM Act covers wrongful conduct by registered practitioners.

The Ministry of Health was not immediately available for comment.

Zuraini wonders if she could still take action against the fraudulent and unregistered healers as it happened before the TCM Act came into effect.

Nevertheless, she vows to inform all her members and cancer patients about their rights under this law. Among the 30,000-plus members of CSM, she said about four out of five have sought treatment from traditional and alternative medicine healers.

"I do this because I was a victim, too,” she said. - BERNAMA