KUALA LUMPUR, Nov 4 — The expanding clinical trial scene in Malaysia could serve as a gateway for cancer patients to gain access to newer and more innovative cancer treatments, a consultant oncologist said.
Dr Tho Lye Mun, vice president of lung cancer group Lung Cancer Network Malaysia (LCNM), expressed the need for Malaysia to incentivise doctors into conducting and pursuing clinical trials, seeing this as a way to not only expand treatments, but also for patients to gain access to these drugs free of charge.
“We are getting more and more sophisticated treatments, but the cost, the R&D cost…the commercial cost is also very high,” Dr Tho said during a forum held last October 21 for National Thrive Week 2022.
“One of the ways is, what I’ve mentioned, is to increase the availability of clinical trials. So these are drugs, class H drugs, which are potentially offered at zero cost to patients within the controlled environment of the trial.
“So you need to think of how we can either channel patients into clinical trials to get a hold of these new drugs or to import them on a special import basis.”
National Thrive Week 2022 was an event hosted by the Breast Cancer Welfare Association Malaysia (BCWA), LCNM, and National Cancer Society Malaysia (NCSM), together with pharmaceutical company Pfizer Malaysia.
The goal of the event was to raise awareness about living with cancer and to launch the Thrive-Malaysia.com website, a comprehensive digital resource for newly diagnosed local advanced and metastatic cancer patients and their caregivers.
The website will give carers and patients access to an array of health tips and articles, educational videos as well as a downloadable patient guidebook and audiobook to help patients and their loved ones better navigate this cancer ‘journey’ of screening, diagnosis, staging, treatment and surveillance
Despite the increase in clinical trials over the years, Dr Tho held that Malaysia does not have an environment that encourages and supports the running of clinical trials, with many doctors choosing not to involve themselves in research due to the lack of financial gain or career progression.
“What I see is lacking perhaps is the infrastructure to support the clinical trial environment in Malaysia,” he said.
“I think the motivation of the doctors to do clinical trials needs to be improved. I mean, I understand completely, that they’re burdened by the clinical world, and clinical trials are often an unrecognised part of their job, so they do not get any financial or even career motivation to participate in clinical trials.
“Two-thirds of the oncologists in Malaysia practice in a private setting. Only one-third practice the public setting, maybe one-sixth or one-eighth practice, including us, practice in a clinical setting, where clinical trial involvement is important in career development. So for the rest of the doctors, perhaps the motivation to do clinical trials may not be as strong.”
Moving on to more affordable treatments, Dr Tho touched upon the use of generic medication to treat cancer.
Generic drugs are medications created to be the same as an already marketed brand-name drug in dosage form, safety, strength, route of administration, quality, performance characteristics, and intended use. These similarities help to demonstrate bioequivalence, which means that a generic medicine works in the same way and provides the same clinical benefit as the brand-name medicine.
Though supportive of the use of generics, Dr Tho cautioned patients to be careful as generics do not undergo the same standard of testing as original drugs.
“Generics have a drawback though that the amount of technical testing and evaluation do not normally meet the same kind of standards as the originator. So generics have to be considered carefully.”
A third solution, proposed to counter the high cost of cancer treatment, is patient assistance programmes.
Patient assistance programmes are programs sponsored by pharmaceutical companies either through financial subsidies or through product donations to low-income individuals to augment any existing prescription drug coverage.
Commenting on the matter, Dr Tho stated that he supported working together with pharmaceutical companies that “hold a key to these drugs…[to] lobby for better access to patient assistance programmes.”
Credible Information, Time And Leeway Helps Prevent Seeking Alternative Treatment
With the large number of treatment options available, coupled with the added information of the disease and the lifestyle changes that patients have to make, it is common for cancer patients to be overwhelmed, leading them to seek alternative methods of treatment.
To help them and prevent this phenomenon, Dr Tho stressed on the importance of giving patients information, support and time to make their decisions.
“So sometimes the brain freezes and the patient goes into indecision or worse, they turn away from conventional medicine and seek an alternative treatment,” he said.
“Not to mention there is a plethora of disinformation out there, you know, on social media, perpetuated through friends and well-meaning relatives, et cetera, which may not actually be very helpful at that point of time.
“So I think, as the doctor, my role is not only to provide credible medical information but also to support the patient. Give them a bit of time and leeway to make the right decision for themselves.
“And I think it’s useful to fight disinformation with facts. So to address specific concerns, for example, side effects. So we need to really give facts and figures, so when patients actually realise that it’s not as bad as, or not as common as was envisioned, that goes somewhere to alleviate concerns.”
Agreeing with Dr Tho’s take on the treatment of cancer patients was Chang Chu San, a metastatic or advanced breast cancer survivor and a patient of Dr Tho’s. Chang held that having a systematic approach, good information and confidence in her doctor was what aided her in conquering cancer.
“Being a maths teacher, actually I’m a very systematic and very practical person. So to tackle this challenging journey is just like solving a very complex maths problem. First, you must look at the questions that identify the keywords in the problem,” she said.
“First we have to identify and look for the information, whether it is enough information for you to stop the problem. That is where I get all the reliable resources from reliable websites, and I search a lot in the American Cancer Society at that time.
“And secondly, after you have identified the key factors, the keywords in the problem, you have to figure out the algorithmic step by step approach. What needs to be plus, what needs to be minus. The plus things are you need to exercise. Maybe you need to see a correct doctor — like Dr Tho. I’m so happy to meet him and I always tell him he’s a saviour, because he gave me a very, very confident treatment plan.
“And I’m not sure whether Dr Tho you remember, I was so confident because he told me. We look at all my results and my scan and my report, he says, ‘’I also discuss with my colleagues from UK.’ I was so happy at that time. Yeah, I got the right doctor.”
No Dumb Questions When It Comes To Cancer
Sri Ram Seetha, a special needs interventionist and certified play therapist at the NCSM, held that it is important for caregivers and patients to ask for help.
The culture in Malaysia, according to Sri Ram, is one of silence, and it is this silence that breeds fear in patients and their caretakers.
“Everything will come in because they [are] in a culture that, you know, cancer was always a big C. It was never the word. They will never say the word. So one what can do, like a caregiver, they can actually seek for help. And if they do not know where to [find] help, they can ask the doctor. They shouldn’t be shy.
“So take things one step at a time. If the doctor at the beginning, because when the person is diagnosed at the beginning, they really do not know where to get help. The only person they see is the doctor. And when everything is said, the doctor actually says everything is a go. It’s a lot here, but receive it one step at a time and ask any question you have.
“Even it may sound silly, you still go on to ask because that is the right for you to know and the doctor can explain.”
Whilst this step-by-step approach for patients is important, Sri Ram also highlighted the need for families to look into their own mental well-being as cancer affects the entire family.
“When one person is diagnosed it’s a domino effect to the family. So, means the whole family is also in a way diagnosed already, and their changes will take place,” said Sri Ram.
Children, especially, will feel the effects of these turbulent changes, despite not showing any outward signs.
“Sometimes people tend to overlook the children because they think they’re playing, but what we are seeing is only the surface of it. We are not seeing what’s the underlining.
“So this is where we, the play therapist, will come in to see what is the underlining communication that they are too afraid to tell it out to the parents because they do see them struggling as well.”
For friends and families who are unsure about what to say to their loved ones battling cancer, Sri Ram states that just their physical presence is enough support and that support does not always have to be verbal.
“So sometimes a good friend or a good caregiver or a relative, if you have nothing to say, your presence sitting or being with the person is already good enough.
“Because sometimes you don’t need communication. You just need the nonverbal actions to show and to show that you are present with them.”
For Chang, support is something that has to come from within.
“Actually your own self is your very strong own support system. I always believe things happen for a reason, and we should have the ability to counter whatever challenges that come along. So I’m the type that will never give up, and I always try to accept whatever that comes along.
“And I feel that we never underestimate our own ability for any obstacles that come along the way. So I think it’s very important.”
