Written by Swastika Shrestha, Research Officer at Birat Nepal Medical Trust in Nepal and co-author of the research article Feasibility of HPV self-sampling pathway in Kathmandu Valley, Nepal using a human-centred design approach
“What’s in a name?” Shakespeare famously quoted. However, turns out- there is more to a name than one might think. When I researched cervical cancer, I found that a majority of the women did not know that cervical cancer and uterine cancer were different entities. Cervical cancer is known as “cancer of the mouth of the uterus” and uterine cancer is known as “Cancer of the uterus” in Nepali. These eerily similar sounding names had many women confused – resulting in them using the terminologies interchangeably. Thus I would find myself explaining the difference between the two to the women I interviewed. When I had to explain to a cervical cancer survivor that she in fact had a sexually transmitted infection that lead to her cancer, I was restless for a few days. I wondered if I did the right thing for she had already defeated the cancer and was living happily with her husband who she had mentioned had been her only sexual partner. I also encountered some groups of women who mentioned they often opted to “test the water of the private part” i.e papsmear. However, not many of them understood that the test was done to check for any anomalies in the cells that could suggest cervical cancer. The women said that they had the water tested to rule out any cancer in the uterus. Many women in Nepal lack information regarding cervical cancer and that it is preventable if screened for and detected in time.
For my research I also interviewed some young educated urban women who engaged in premarital sex. Premarital sex – more common in urban Nepal than some people would like it to be – is still frowned upon by the society at large. These young women seemed to be well aware of the need for testing for Sexually Transmitted Infections (STIs). However, they were reluctant to visit gynecologists who often seemed to inquire about their marital status when they requested for STI tests. They mentioned that self-sampling kits for STIs would be in their favor if such services existed in the country – which it sadly does not till date. However, they added that even if such services existed, they would still have to look for ways to sneak the kits into their homes and to discard the packaging without any family members noticing. Thus, even when women are aware of the need of screening, there are societal barriers that women, especially unmarried women, must face for them to be screened without being judged.
In the context of women who dwell in the rural areas, they are often busy doing household chores and farm work. This means they often do not have the time visit the hospitals even when their healthcare needs are pressing, let alone for preventive care. Research suggests that late diagnosis of cervical cancer is often common amongst illiterate women who often belong to less privileged families with lower socioeconomic status (Gyenwali et al, 2013). This necessitates the urgency of screening as the burden of treatment cost in cases of cervical cancer for such households can prove to be catastrophic. If only women in rural areas had access to self-sampling services, they could test for preventable diseases much more easily and thus prevent any costs that could incur for future treatment.
My visit to Bhaktapur Cancer Hospital, one of the only cancer specialized public hospitals in the capital, was a reality check in itself for me. There I saw scores of people queuing for their turn for checkups. They came from all over the country from the rural village of Dumi in the far west to Phulbari in the East. They not only had to bear the treatment costs but also had to spend quite a lot for their commute to the city and their accommodation and food in the expensive capital city. The public healthcare sector in Nepal is poorly equipped and lacks adequate human and financial resources for efficient service delivery. There are many private healthcare providers in the country – most of them are concentrated in the urban areas – who are better equipped to serve the people in the country. However, the private health service comes at a cost many Nepalese may not be able to bear. Given the poor economy of the country and minimal income of many households, people have to prioritize their expenses which often does not include preventive healthcare. People visit healthcare service centers often only when symptoms become unbearable, which in the case of cervical cancer means that the cancer would have extended to the uterus. This means that women are spending a fortune on curative services instead of doing screening tests which could have diagnosed the problem much earlier and saved them money.
Evidently, there are many factors that have proven to be a hurdle in the path of screening for HPV and cervical cancer in Nepal. The factors include lack of awareness, social stigma, and the poor infrastructure that is not able to provide adequate service to the ones who need it the most. In such cases, a self-sampling method of HPV testing could prove helpful provided such service could be provided to the women at a price that does not scare them off from trying it. My research on the feasibility of self-sampling for HPV testing in Kathmandu found that there is a serious need for increased awareness of HPV screening and access to alternative testing pathways among Nepali women. In the urban context of Kathmandu, where access to the internet is highest in the country, an online self-sampling pathway has potential to address this need and to remove some of the current barriers to testing, such as stigma.
The article by Swastika Shrestha and colleagues was published by SRHM in December 2020 and is available here: https://www.tandfonline.com/doi/full/10.1080/26410397.2021.2005283
Gyenwali, D., Pariyar, J. and Onta, S.R., 2013. Factors associated with late diagnosis of cervical cancer in Nepal. Asian Pacific Journal of Cancer Prevention, 14(7), pp.4373-4377.
Please note that blog posts are not peer-reviewed and do not necessarily reflect the views of SRHM as an organisation.