Malaysian homegrown cervical cancer screening programme is a pioneer role model

Through the Rose Programme, women can perform their own cervical screening using a simple self-swab which is easy-to-use, painless, and effective, instead of pelvic examinations by healthcare professionals.

Hasimah Wahab, 65, from Mukah, Sarawak used to be afraid to get her cervical cancer screening done because she was afraid of undergoing the Pap Smear. But, when she found out about a self sampling procedure that she could do herself – one that wasn’t invasive nor painful – Hasimah decided to give it a go.

“I’ve done the Pap Smear before, so I was very scared because I expected this to be the same. But now that I’ve done it, I would recommend more women to do it. Based on my experience, the Covid-19 test is more painful than this HPV test. I did it myself, so it’s not embarassing and not painful.

“Just put your finger on the red line (of the swab) and, after inserting, twirl it 10 times. I twirled it more than 10 times because it was not painful at all,” she says.

Hasimah is among many women who have benefitted from the Rose (Removing Obstacles to cervical ScrEening) Programme which provides a new approach to cervical screening – one that has made it acceptable and accessible to women. The method involves self-sampling (instead of pelvic examination by healthcare professionals) using a swab. It is a human papillomavirus (HPV) DNA test, rather than a diagnostic test that uses microscopy to detect abnormal cells.

Rose Foundation staff educates women on how to self-swab and collect samples for the HPV PCR test at Hospital Raja Perempuan Zainab II in Kota Bharu, Kelantan. Photo: Rose Foundation

This method addresses some of the main barriers that stop women from getting screened, such as fear, embarrassment, inconvenience and poor infrastructure to get to clinics, among others.

Another woman from Desa Segambut, Kuala Lumpur, who wished to be known only as Salina, said that she was pleasantly surprised at how easy the self sampling was.

“It’s very simple and only took a while. I thought it was very hard and we needed to see a doctor, but no, we just had to do it ourselves. The HPV test kit is like a Covid-19 test kit.”

According to Prof Dr Woo Yin Ling, who is the founding trustee and advisor of the Rose Foundation, in the past, many women weren’t willing to go for cervical cancer screening due to embarrassment or discomfort because it involved a pap smear which is often painful, invasive and performed by a doctor, often male, who is a stranger to them.

Moreover, people who are healthy seldom think about screening, especially if it is inconvenient and might lead to bad news, she says.

The HPV PCR testing for the self-collected samples is carried out at Rose Laboratory to ensure accuracy of results.

“But what is unique about the Rose Programme is it enables and empowers women to perform their own cervical screening using a simple self-swab which is easy-to-use, painless, and effective. The swab is then sent (by post or by hand) to the Rose Laboratory where HPV PCR testing is done, followed by prompt delivery of results via SMS or WhatsApp. There is linkage to care where women with positive test results are connected to a colposcopist (specialised gynaecologist) for appropriate follow-up and treatment.

“This approach can save lives and spare women and families from the suffering and financial hardship associated with cervical cancer,” says Dr Woo.

So far, over 24,000 Malaysian women have been screened via this programme, 99% of whom said they would do the test again. Over 194 potential cervical cancer cases have been identified and linked for treatment.

Women will receive prompt delivery of results via SMS or WhatsApp from Rose Foundation's call centre. Those with positive test results are provided with counselling and referred to a colposcopist (specialised gynaecologist) for appropriate follow-up treatment.

According to her, there are many cancers that impact women, but the programme has chosen to focus on cervical cancer because “it is the only cancer that can be eliminated”.

“Other cancers are multi-factoral and even people with the best lifestyles can still end up getting cancer. But for cervical cancer, if we use the tools that we have now and follow the three pillars of screening, vaccination and treatment, it can be eliminated in our lifetime,” she says.

Cervical cancer is the top three most common cancers among women in Malaysia and it often strikes women in the prime of their lives: Three out of four women in Malaysia with cervical cancer are below the age of 65.

In Malaysia, the government implemented the HPV vaccination programme in 2010 for young girls aged 13 (Form One) and have managed to reduce infection rates. The new screening model is being implemented for women aged 30 to 65, says Dr Woo.

(About 99% of cervical cancer cases are caused by high-risk HPV types).

If we can screen all women from ages 30 to 65 at least once in their lifetime, we can eliminate cervical cancer in this lifetime, says Rose Foundation founding trustee and advisor Dr Woo.“Just imagine if we can screen all women within those age ranges at least once in their lifetime, we can eliminate cervical cancer in this lifetime. That’s how amazing this is because no other cancer that we know of can be eliminated at this point of time, except cervical cancer,” she says.

Woo highlights that all women who have had sex – even if it’s just once – should be screened.

“Where there are situations of abuse or incest in the past, or even if a woman might have had just one experience, these women should be screened as well once they reach 30 years.

“We can’t use the term ‘sexually active’ because of the social stigma since some single or unattached (widows or divorcees) women from conservative communities might not come forward to be screened because they don’t want to be ‘labelled’,” she explains.

Getting the message accross

Creating awareness is something that Dr Woo and her colleagues in the Programme are constantly working on. She recalls the uncomfortable silence that greeted her when she first started speaking – in her textbook perfect Bahasa Malaysia – to the Kenyah and Iban women in one of the villages in Sarawak.

“Good morning, I’m here to talk to you about cervical cancer screening,” the consultant gynaecological oncologist recalls herself saying to the unresponsive crowd.

“Then a local woman who used to work as a matron suddenly stood up and interrupted me. She said, ‘Tau tak (Do you know) ‘pet pet’ (local slang for private part)? Test ini untuk (This test is for) pet pet ya’, using the local dialect and commonly used word, and the listening women suddenly came alive and nodded attentively,” says Dr Woo, who was recently in Sarawak with her team and other volunteers to facilitate cervical cancer screening for the local women through the Programme.

After the women collect their own samples, the HPV PCR test kits are then sent to Rose Laboratory for testing.

“If you look closely at our logo, you’ll see an image of a woman enclosed and protected by the petals of the rose (which symbolise arms), and this is essentially what the Rose Foundation is all about,” she says.

“Our aim – as stated in our tagline ‘empower women, eliminate cervical cancer’ – is to protect women in marginalised communities from cervical cancer and this is done through our revolutionary approach to cervical screening,” says the professor from the Department of Obstetric and Gynaecology in the Faculty of Medicine at Universiti Malaya.

One of the keys to the success of our programme is that it is spearheaded by ‘local champions’. We have training sessions for local champions (such as the former matron) two weeks to a month before the screening takes place, she shares.

Local champions reach out to local women through the Rose Programme at Sekolah Kebangsaan Kawiyan in Ranau, Sabah. Photo: Rose Foundation

“Our team did a recce in Sarawak a month earlier. They surveyed which villages they could go to, identified the local champions they could train, got them to experience the screening themselves and then identify the longhouses where they could talk to the women about getting screened,” she says.

“We work with local women’s organisations, hospitals, and other NGOs. Leading the way was the Women, Family and Community Development Minister Datuk Seri Nancy Shukri who personally pledged RM30,000 towards the cause,” she adds.

The programme has been supported by the generosity of the people and “area experts” who have contributed to the cause, says Dr Woo.

“We’ve had human resource specialists offer their services because they believe in our cause. For data protection and legal aspects, legal firm Raja, Darryl & Loh, has dedicated their CSR time to help go through our documents. And for our audits and taxation, Ernst & Young have come in to do their CSR work with us,” she says, adding that partnerships with donors such as ETIQA Cares (a main CSR supporter for three years), have made the Programme possible.

“So, volunteers have been helping not just in fieldwork but also in our infrastructure and operations. We’ve more than 500 volunteers in total, including the area experts and field workers. There are male volunteers too.”

After the training during the recce, the Rose Foundation team returns to the place two weeks to a month later. They bring the testing kits with them and stay there for the duration of the programme (usually two weeks or less), where screening is done, within a few hours at each site.

“After the women perform the self-swabs, the testing kits are brought back by hand or posted back to Rose Laboratory for testing. Since the swabs are good within two weeks and they’re in safe, non-breakable containers, there isn’t a need for special postal boxes. They can be transported without much risk and they’re never delayed back to Rose Laboratory,” she says.

“All that’s required is that the testing kits need to be labelled correctly so that they can be identified. When they arrive at the lab, they’re processed. We test at Rose Laboratory itself because we want to maintain the standard of testing and ensure its consistency,” she explains.

She adds that they use the validated HPV test because it’s reliable and accurate.

“So, the whole process from education, screening, testing, follow-up, etc is all within our control,” she says.

Breaking Barriers, Saving Lives: the Rose Programme overcomes barriers to deliver cervical screening to hard-to-reach populations in Tubau, Sarawak. Photo: Rose Foundation

Paying it forward

While the Rose Programme specifically targets marginalised women, screening is also available for others through the ‘Gift a Rose’ programme.

“Although our focus is on screening marginalised women, we do have a cervical screening package – which offers education, screening, and treatment referrals for positive cases, similar to the Rose Programme – for other women. It costs RM300 and the proceeds help subsidise screening for underprivileged women,” says Dr Woo.

She adds that women can book a session through their website.

Another objective of the programme is to “eliminate the fear of abnormal screens (positive results) and the unknown”, she says.

“According to our studies, 85% of women suffer from high levels of stress when they know that HPV is detected. This is because they think they have cancer and that they’re are going to die,” she says.

“This is why education and follow-up is so important. We don’t just screen the women and then leave them to cope by themselves after that. Our call centre staff at Rose Laboratory will walk them through the process and even make an appointment for them at the hospital for subsequent treatment should they be tested positive,” she adds.

Rose Foundation has 11 full-time staff, including two lab technicians, two call centre staff, four outreach team members, as well as one or two interns, and all of them are flexible and trained to do each others’ work too, she says.

More info at: programrose.org/