Not about money: Unlike in some countries, clinical trials run in Malaysia do not pay their participants, aside from compensation for transport or similar expenses. — 123rf
WHEN Syed Johari Syed Jamaludin found out he had idiopathic pulmonary fibrosis (IPF), he knew he would die soon.
The question was how soon?
IPF is a rare disease where one’s lungs become scarred, breathing becomes increasingly difficult, and the only treatment available can merely slow the progression of the disease but not stop it. And even this treatment would break the bank for most people: Syed Johari says he spent US$12,000 (RM52,560) a month on the treatment in the first year, though the retired 66-year-old stopped after that as it was too costly.
That’s when he discovered something which he thought might be able to prolong his life and contribute to science at the same time: clinical trials.
“I think these trials, they have already tested on the actual guinea pigs and lab rats, so it is quite safe.
“And I still can make good of however many more years I have and contribute to society globally and I don’t have to spend money [on the treatment].
“I have been reading articles from Europe and the United States about this IPF. They haven’t got a medicine to stop this disease.
“But in our faith, when God brings something, there is a solution. But we have to look for it. That’s research.
“If you stop research, you stop hope,” he says.
So he asked his doctor if there were any clinical trials for IPF.
“I asked, is there a clinical research trial online for this? Yes. So I asked, why aren’t you taking me in?”
Eventually, he was accepted into a global clinical trial for a new treatment for IPF, giving him hope for a longer and higher quality of life.
Searching for hope: Syed Johari on the mobile luggage he has adapted to carry an oxygen tank. He says research represents hope to him, both for him and for society. — The Star
He also happily says that joining a clinical trial supervised by a doctor certified in clinical research means that he gets more personalised treatment from the doctor.
“If anything happens to me, any side effects, I can go straight to the doctor and ask them about it and get immediate treatment.”
‘Scared to not be accepted’
Syed Johari says joining a clinical trial has also made him realise he can find ways to make his disease more manageable in his daily life.
“This clinical trial has broadened my vision because not only do you suffer if you’re sick, you just sit there and wait to die. So I had to innovate myself.
“I couldn’t even walk 50m so I found a way to mobilise myself,” he says, showing off his new motorised luggage with an attached oxygen tank.
Syed Johari is not alone in choosing to join a clinical trial.
ST Mah, a 57-year-old retired teacher, who was diagnosed with fourth-stage lung cancer in 2022, also found renewed hope through clinical research.
“When my medical report came back, the oncologist said we are sorry, we cannot treat you because you have a very, very rare type of lung cancer and there is no medication for this,” she recalls.
The only option she was given was to try her luck at the Univer-siti Malaya Medical Centre (UMMC) and see if she could join any suitable clinical research trials.
Unlike many others who may be fearful of joining clinical trials due to the perception of becoming “lab rats”, Mah says she was fearful that she would not be accepted into the clinical trial.
“I was praying very hard that they would accept me because if they did not accept me, I would not have any treatment.
“But thankfully, I was accepted as a participant in the trial and I am still surviving until now and can still do my daily activities,” she says, adding that the National Cancer Society Malaysia has also provided her with a lot of support throughout her cancer journey.
She was also relieved to find out that UMMC has a distinguished reputation for conducting clinical trials, especially for cancer patients.
Not having to pay for the treatment and getting extra supervision and attention from the doctors due to being in the trial was another huge boon for her.
“I would say the drug company [sponsoring the research] really takes good care of the participants, in the sense that of course, we are trying the drugs for them so I don’t have to pay a single cent.
“I also undergo a scan regularly at no cost and they monitor me closely,” Mah says.
That is not to say she was not worried at all about joining a clinical trial.
“Because people always tell me you will become a guinea pig, but the doctor always reminded me and encouraged me that I’m doing something good for the future of Malaysians because I’m testing the drug.”
Her rare type of lung cancer has also got her thinking about the future of her children.
“I think cancer may have something to do with DNA. Two of my cousins have passed away from lung cancer. I have also warned my children to be very careful.”
Now, she is glad she participated in this trial because she has helped make this treatment accessible to not only her children but all Malaysians. The drug was approved for use in Malaysia earlier this year.
As a patient with a lifelong haemophilia disorder that is mostly hereditary, Mohd Zulhilmi Paiz Ismadi and his cohorts participating in clinical trials consider themselves pioneers so that the next generation can have access to even better medication.
He is also thankful for those before him who participated in clinical trials for haemophilia.
“We went from having no medicine to having some medicine, and it is because this was advocated by my seniors.
“I benefited from the sacrifice of my seniors, so now it is my turn to give back,” says Zulhilmi, who is a lecturer at a private university.
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Currently in Malaysia, most clinical trials recruit patients with existing conditions to test new treatments, drugs or procedures, but occasionally there are trials which require the participation of healthy individuals.
To compensate or not?
Some examples are the global vaccine trials that took place at the height of the Covid-19 pandemic several years ago.
When journalist YC Meng found out that volunteers were needed to test the safety and effectiveness of a vaccine candidate, he quickly signed up.
It is often harder to find healthy volunteers to join clinical trials as, unlike patients, they may not have the motivation to participate in a trial for new medication or procedures.
Yet, for the sake of humanity and science, Meng was willing to join the vaccine trial.
“A Covid-19 vaccine needs to be proven on humans and I was not about to wait for other people to show whether it is effective or whether it will turn humans into mutants.
“In the larger scheme of things, injecting ourselves with an unproven vaccine is not at all a high price to pay, given the far harsher realities endured by many of our fellow citizens,” he says.
However, he understands the hesitancy many others may have.
Unlike in some countries, clinical trials run in Malaysia do not pay their participants aside from a small compensation for transport or similar expenses.
Meng believes that offering participants additional forms of compensation may encourage a higher rate of participation in clinical trials.
“If the pharmaceutical company does not offer compensation, it will be hard to attract participants.
“Some trials need subjects to stay in the facility for prolonged periods and not just a visit lasting several minutes.
“If I am a pharmaceutical company, I will have to pay because it is a for-profit operation, save for the emergency situation caused by Covid-19.”
A lab worker working on clinical trials for a Covid-19 vaccine at Research Centers of America in the United States in 2020. — Bloomberg
Clinical Research Malaysia chief executive officer Dr Akhmal Yusof says compensation is a tricky area to navigate as sponsoring companies may be concerned about the ethical issues surrounding paying trial participants.
For patients like Mah, though, she says compensation was not something she even thought about.
“I never thought about it because I know that the drug that they are trying on us is very, very expensive and they [the sponsoring company] pays for any treatment for side effects also.”
