Explainer

Breaking barriers: challenges in CALD community access to cancer clinical trials in Australia

Cancer patients from Australia's Culturally and Linguistically Diverse (CALD) communities, representing racial and ethnic minorities, are underrepresented in clinical trials, according to a recent study led by Dr. Abhijit Pal. As a PhD Candidate and Medical Oncology Staff Specialist, Dr. Pal, who also serves as the Director of Advanced Training at Sydney's Liverpool Hospital, discusses his findings with SBS Bangla.

OVARIAN CANCER DRUG MELBOURNE

Cancer patient Susan Fox takes a pill as part of a clinical trial for a new drug at the Royal Melbourne Hospital in Melbourne, Thursday, June 9, 2011. The drug has been shown to prevent the regrowth of ovarian cancer. Source: AAP / JULIAN SMITH/AAPIMAGE

Key Points
  • While cancer remains the leading global cause of death, it's important to recognise its potential for cure.
  • Clinical trials offer access to tomorrow's treatments today, often unavailable outside these trials.
  • Patients possess the right to inquire about the trial entry process, reasons for participation, and should actively seek information.
  • Participation in cancer clinical trials seems skewed towards those who are Caucasian and financially privileged.
  • Urgent funding is essential to ensure the inclusion of diverse, multilingual populations in these trials.
Cancer treatment comprises three main components: radiation, surgical, and medical. In his role as a medical oncologist, Dr. Abhijit Pal focuses on the medical aspect, using drugs or working with drugs within the medical department.

Beyond his medical practice, Dr. Pal is concurrently pursuing a PhD investigating 'participant demographics in clinical trials.'

Dr. Abhijit Pal was born and raised in Australia. His parents migrated to Australia from Kolkata, India in the 1980s.

How good is cancer treatment now?

Addressing the state of cancer treatment today, Dr. Pal challenges the common notion that "Cancer means no answer," stating unequivocally, "No, it's not true."

He emphasises that while cancer remains a significant global cause of death, advancements in treatment are substantial.

Contrary to the misconception that a cancer diagnosis signifies the end, he asserts, "There are much improved treatments available, based on my experience as a medical oncologist in Australia and abroad."

Acknowledging the prevailing reality that cancer is a leading cause of mortality worldwide, he underscores a more optimistic perspective, stating, "Cancer is still the biggest cause of death, but that doesn't mean it's not curable. My primary message is that the landscape of cancer treatment, research, and clinical trials has significantly progressed."
ড. অভিজিৎ পাল বলেন, “বুস্টার ডোজ ইমিউন সিস্টেমকে শক্তিশালী করে আর দীর্ঘমেয়াদী সুরক্ষা দেয়।”
Dr. Abhijit Pal, the lead researcher and a PhD student, discovered that low English proficiency is a primary factor contributing to the underrepresentation of CALD (Culturally and Linguistically Diverse) communities in cancer clinical trials. Credit: Dr Abhijit Pal
"As a doctor I can say that there is a lot of good work going on right now. But research is an important thing here, which leads to a lot of new drugs now. A lot of better treatment methods have been discovered now, so I would say that now is an exciting time for cancer treatment."
Consider a scenario from just a decade ago— individuals diagnosed with advanced melanoma faced grim prospects. However, in the past ten years, advancements have been so substantial that the survival rate has risen to 50 percent at the 5-year mark. This shift is attributed to the success of innovative immune therapies.
Dr. Abhijit Pal, Medical Oncology Staff Specialist and Director of Advanced Training at Liverpool Hospital, Sydney
Illustrating the transformative progress in cancer treatment, Dr. Pal cites an example: "Consider a scenario from just a decade ago— individuals diagnosed with advanced melanoma faced grim prospects. However, in the past ten years, advancements have been so substantial that the survival rate has risen to 50 percent at the 5-year mark. This shift is attributed to the success of innovative immune therapies."

Dispelling the notion that chemotherapy was once synonymous with cancer care, Dr. Pal says, "Earlier, cancer treatment was often equated with chemotherapy. However, today, a diverse array of methods is employed, with drugs being just one facet of the comprehensive approach."
Listen to the first part of Dr. Abhijit Pal's interview in Bangla
Bangla_Abhijit Pal_Cancer trial_1st Part.mp3 image

ক্যান্সার চিকিৎসা এবং ক্লিনিক্যাল ট্রায়ালগুলো এখন আগের চেয়ে অনেক উন্নত: ড. অভিজিৎ পাল

SBS Bangla

09/10/202310:01
"We now only use tablets here, without using any chemotherapy."

"Scientists are working day and night in the United States, the United Kingdom, and other parts of the world. There are good therapies for cancer now in clinical trials and they are working well," says Dr. Pal.

How patients are selected for cancer clinical trials

Dr. Pal explains, "When someone has cancer and they're on standard therapy, it's great to be able to get into a clinical trial, getting into a clinical trial is getting tomorrow's drugs today, which aren't very readily available without a trial. So, it's great to be able to get into a trial."

Finding clinical trial opportunities

New South Wales has the largest number of trials in Australia due to population and patient volume.

Dr. Pal addresses common fears about clinical trials, stating, "In my experience as an oncologist at Liverpool Hospital, many patients worry about being a 'guinea pig.' However, in Australia, these thoughts are not so relevant, clinical trials in Australia are conducted very carefully according to the rules – there is extensive oversight by independent scientific and ethical review committees separate to the sponsor of the trial.”

He emphasises the scientific rigor of the approach, noting, "The trial process is very scientific, and from what I've observed, some participants experience improvement."
If someone (cancer patient) has more problems or who is not doing so well, we don't take them to trial. Mostly people who are successful in going on to a trial are relatively healthy despite their cancer are taken into the trial. We do the research carefully, but we do not want to put anyone at a disadvantage. We do not want to harm, and the patient comes first in all clinical research.
Dr. Abhijit Pal, Medical Oncology Staff Specialist and Director of Advanced Training at Liverpool Hospital, Sydney
Dr. Pal explains the careful selection of patients in clinical trials through inclusion and exclusion methods.

"If someone (cancer patient) has more problems or who is not doing so well, we don't take them to trial. Mostly people who are successful in going on to a trial are relatively healthy despite their cancer are taken into the trial. We do the research carefully, but we do not want to put anyone at a disadvantage. We do not want to harm, and the patient comes first in all clinical research," he says.

Process to enter the clinical trial - Ask the Doctor

Dr. Pal explains that not all clinical trials are available everywhere, emphasising the patient's role in choosing where to participate. Despite fears and worries, he underscores the importance of patient confidence in the trial.

Encouraging patients, he suggests, "Ask your doctor about the trial entry process. You have the right to understand why you're entering the trial, and it's beneficial to inquire. Both the doctor and the patient share responsibility in understanding the treatment."

Are clinical trials always risk-free?

Dr. Pal acknowledges that despite following rules, clinical trials carry some risks. He notes, "Current drugs often provide limited benefits for advanced cancer, introducing potential risks. Patients should ask their doctors about these risks and are free to decline participation if they find them too frequent or severe."

Discussing patient preferences, he explains, "Patients' attitudes towards risk vary—some are willing to try one trial, others opt for multiple trials, while some prefer to avoid risks altogether. Matching trials to patients is challenging, but the pursuit of treatments, research, and trials must continue."

Dr. Pal highlights the diverse patient preferences regarding risk-taking in trials—some opt for one trial, others for multiple, while some prefer avoiding risks altogether.
The main reason is that people from different cultures don't speak English well, they don't know about clinical trials or the benefits, they can't discuss it, they can't even ask questions about it.
Dr. Abhijit Pal, Medical Oncology Staff Specialist and Director of Advanced Training at Liverpool Hospital, Sydney
He acknowledges the challenge in aligning trials with individual preferences but underscores the importance of persisting in treatments, research, and trials.

Why are racial and ethnic minorities excluded from cancer clinical trials?

"It appears that those who are Caucasian and have the financial means are the most likely to participate in cancer clinical trials," says Dr. Pal.

"The main reason is that people from different cultures don't speak English well, they don't know about clinical trials or the benefits, they can't discuss it, they can't even ask questions about it," he says.

Dr. Pal observes a similar trend in the United States and the United Kingdom among multilingual populations.

Misunderstandings about cancer persist in some communities, but he emphasises the importance of expressing interest in clinical trials for potential benefits.

The language barrier poses a significant challenge, hindering access to trials for non-English speakers.

"Many times, sponsors also add conditions and the protocol states that the patient must be able to speak English which is another issue."

Although conditions requiring English proficiency are changing in Australia's multicultural setting, Dr. Pal highlights persistent obstacles preventing multilingual communities from participating in improved cancer treatments and trials.
Listen to the second part of Dr. Abhijit Pal's interview in Bangla
Bangla_Abhijit Pal_Cancer trial_2nd Part image

ক্যান্সার ক্লিনিক্যাল ট্রায়ালের সুবিধা - যেসব কারণে পিছিয়ে আছে অস্ট্রেলিয়ার অভিবাসী-বহুভাষী কমিউনিটি

SBS Bangla

17/10/202312:07

Is the multilingual community hesitant about clinical trials?

Dr. Abhijit Pal notes distrust among communities due to experiences with doctors in their home countries. While doctors there may charge more, he emphasises that in Australia, such concerns are alleviated as the country offers many advantages.

In Australia, where advantages abound, he underscores a disparity between socially powerful individuals and the multilingual community.

Dr. Pal explains, “Many times people who are not socially powerful have weak financial status, or their lack of education can hinder them, because of which they can sometimes feel shy to ask for benefits or raise their voice in the healthcare system. On the other hand, powerful people in society ask what the benefits are, and they can go on clinical trials, so it is a self-perpetuating cycle.”

Dr. Pal says the next generation of people from the multilingual community who were born and raised in Australia were, however, aware of these issues.
It's important to recognise that for Australia to truly embody equality, we must exert greater effort in providing additional support to individuals with limited English proficiency, particularly in the trials sector.
Dr. Abhijit Pal, Medical Oncology Staff Specialist and Director of Advanced Training at Liverpool Hospital, Sydney
He says there are two issues of equality and equity in the health sector of Australia. Even though the issue of equality is implemented, there are still weaknesses in the issue of equity.

"I consistently bring up this concern with sponsors and other technology stakeholders. It's important to recognise that for Australia to truly embody equality, we must exert greater effort in providing additional support to individuals with limited English proficiency, particularly in the trials sector," says Dr. Pal.

“We are actively disseminating this information through social media. Despite the robust health sector, there is more work to be done in terms of community engagement.”

Funding is essential to involve multilingual populations in cancer clinical trials

Dr. Pal highlights the need for funding to include multilingual populations in cancer trials, citing a survey showing the requirement for interpreters and financial support.

In Australia's advanced healthcare system, he stresses the nation's commitment to equitable healthcare access for all.

Encouraging patients to request interpreters and information in their native language, Dr. Pal addresses cultural differences and emphasises the importance of open communication with doctors for better outcomes.

Citing research, he notes a lower participation rate in clinical trials among non-English speakers.

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8 min read
Published 15 December 2023 5:34pm
Updated 16 December 2023 12:32am
By Shahan Alam
Source: SBS

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