In recent news, the Drugs Controller General of India approved the Serum Institute of India to market India’s 1st indigenous HPV vaccine, Cervavac. Human papillomavirus (HPV) Infections are one of the most common sexually transmitted infections, and sexually active individuals will be infected at some point in their lives; while 90% of the infected population may eventually clear the infection, HPV infection can progress to chronicity, and precancerous lesions can lead to invasive cervical cancer. HPV vaccines protect from such infections; however, the awareness about HPV and its vaccine is very low in India, even though HPV contributes to mostly all cases of cervical cancer.
“Many obstetrician-gynaecologists are not immunised themselves; when I learned about HPV in my postgraduate studies, I had already passed the age of 26, so I could not get the vaccine for myself. The vaccine’s effectiveness is greatest when administered between the ages of 9 and 14, and after that, coverage declines. Moreover, you can administer the vaccine up to the age of 26. The importance of the vaccine is poorly understood.” said Dr Tanvi Katoch, Senior resident in the obstetrician-gynaecology Department in PGIMER, Chandigarh.
Cervical cancer is the most common cancer among people with a cervix in India. There are approximately 483.5 million people over the age of 15 in India at risk of developing cervical cancer. According to a recent report, India has approximately 123907 new cases diagnosed annually and 77348 deaths.
Even though cervical cancer is a preventable disease with early detection and intervention, India accounts for nearly one-third of all cervical cancer deaths worldwide due to a lack of awareness and accessible resources and no universal screening programmes. This is because cervical cancer is diagnosed at an advanced stage in more than 80% of cases, resulting in high mortality.
Although HPV vaccines such as Gardasil and Cervarix have been licenced in India since 2008 for females aged 9 to 45 years, and the National Technical Advisory Group on Immunisation (NTAGI) has approved their use, Indians are generally unaware that HPV infections can lead to cervical cancer. Many factors contribute to this lack of awareness, including cultural barriers, patriarchy, low socioeconomic status, poor access to healthcare, patriarchal norms, and a lack of resources and infrastructure.
“In a survey done by our organisation, almost 53% of the people we spoke to had never heard anything called cervical cancer; out of 47% who had heard about cervical cancer, 23% of them thought that it is the cancer of the neck, so they had no clue where the cervix was. So, barely 25% of the people knew what cervical cancer is and knew it correctly,” said Mridu Gupta, Chief Executive Officer of CAPED, an organisation working towards awareness creation about the latest developments in the field of cancer and cancer screening.
The shame associated with reproductive and sexual health topics is also a major reason why awareness of preventable illnesses such as cervical cancer is lacking. The stronghold of cultural barriers in terms of sexual health and reproductory health in India has created an environment in which sex education and sexuality are not openly discussed.
“People are unwilling to listen when a discussion about HPV or the presence of the HPV virus is initiated, particularly among sexually active women. Because HPV is linked to sexuality, social taboos follow,” told Dr Tanvi Katoch.
The HPV vaccine, despite being around for more than a decade, has not yet become a part of the National Immunisation schedule. Many right-wing groups in the past, like The RSS affiliate Swadeshi Jagran Manch, even wrote to Prime Minister Narendra Modi, claiming that including the vaccine in the Universal Immunisation Programme would be an “unmitigated disaster.” Opposing the virus for ‘moral reasons,’ claiming that giving the vaccine to young girls would encourage them to be sexually active whether married or not.
When such sexually transmitted diseases are detected in a patient, doctors are frequently the ones who shame the patient, discouraging many from getting screened or even the following treatment. “There is this fear of going to the gynaecologist. Because there is a taboo, after all, gynaecologists here are Indians, they come from Indian households, and they belong to the same society, so the fear of taboo and the fear of judgement is very real; you just cannot talk about sex,” told Dr Tanvi.
This is a widespread problem in India. Women’s chastity and the concept of monogamous relationships are viewed as essential and are associated with character and morality, with no room for discussion of issues such as safe sex practices, STIs, and STDs.
“We went to this celebrity to ask him to be our Brand Ambassador for our program because he has two daughters. We also wanted to bring men into the conversation and so thought it would be a great idea, but his wife insisted that in our country, we are all in monogamous relationships
and so cervical cancer is not a big deal,” told Mridu.
However, this stigma of attaching morality and chastity to women also leaves a key aspect of HPV virus transmission through sexual transmission in India—male partners. Lack of safe sex practice knowledge and the no-use of condoms by their partner makes these women vulnerable to HPV and other STI/STD transmission.
“Males are mostly carriers, while females are mostly receptors, so infections primarily affect them. I’ve heard men complain about how tired they are of spending so much money on their wives’ treatment but don’t get better. They fail to recognise that they are the ones infecting their wives.” said Dr Surbhi.
Migration for work due to lack of opportunities, a lack of resources, and active caste discrimination also become a factor in the spreading of HPV. It is common for such male partners who are away from their families to seek sexual pleasure by availing the services of a sex worker.
“There is this belief that if you use condoms, pleasure comes down, so they offer more money to sex workers for not using condoms, other myths like washing genitals after intercourse with distilled water makes their chances to contract diseases low are also prevalent,” told Dr Sylvia.
These gaps in sexual health knowledge can sometimes be the root cause of disorders like Dhat Syndrome. Dhat Syndrome is a culture-bound sex neurosis common in South Asian countries. Beliefs about the cause of dhat syndrome vary between patients but are frequently influenced by cultural beliefs and the opinions of indigenous medical practitioners.
Talking about Dhat Syndrome, Dr Sylvia said, “There are a lot of misconceptions even among the truck drivers if you are sitting close to an engine for a very long time the heat is not good and the semen being inside is not good therefore having sex is important, and so they seek sex workers,”.
This makes their partners vulnerable as well as increases the chances of Sex workers being infected with HPV, which rarely gets checked during the precancerous stages as the symptoms are very often ignored as a UTI for which they mostly self-medicate.
“Most of the sex workers we were working with all were suffering from itching and pain in their genital areas; it becomes such an integrated part of their lives that they start living with it without seeking treatment,” told Dr Surbhi Singh, Gynaecologist and the Founder of Sacchi Saheli, an organisation working towards destabilising prevailing taboos and secrecy that surrounds the natural process of menstruation, and one’s sexual & reproductive health.
The other thing that discourages many in the sex working community from getting themselves checked is the stigma attached to their work. Dr Surbhi also shared how many questioned her work with sex workers because many in society have the mindset that they are solely responsible for their situation, be it medically or socially.
“People don’t understand that it is their job and it’s not a well-paying job either that they could take care of themselves. Also, it is not true that everyone in this profession seeks to be rescued.” told Dr Surbhi.
While human trafficking is a significant issue in this community, there are various levels of people who work in a brothel. Some have agency on their time and client, those who come to these brothels to sing or dance, and those who are confined inside with no way out because they are still paying off their debt.
“We were only able to help and provide the vaccine to the first levels, but there are others who also need medical interventions,” said Dr Surbhi.
The stigma associated with reproductive organs also discourages many people from seeking medical attention until and unless the symptoms of their illness interfere with their day-to-day lives.
“In villages, many are also oblivious to the health of the women in their families. All they care about is the chores being done at home by these women,” said Tulsi Pandey, ASHA worker in Almora District in Uttarakhand.
This stigma is also birthed from a cultural, religious place. Talking about reproductive organs is deemed dirty.
“Women here are not provided with social support, and the health of a woman is ignored. There are also religious taboos associated with it, and in Kashmir, which is a Muslim state, these things are associated with religion very quickly. One time we were having a session on menstrual hygiene at an open space where Islamic activities also take place. When we went there, the representative of the place came to us saying that this is a holy place, you cannot talk on such dirty topics.” told Zahida Ahanger, Founder, STAND FOR KASHMIRI YOUTH TRUST (SKY) an organisation working on women empowerment and health among other things.
For the socially and economically underprivileged communities, access to information as well as resources also plays a big part when talking about cervical cancer and HPV infections. Cervical cancer disparities around the world are linked to disparities in human development, social inequality, and living standards. Cervical cancer rates can be reduced by reducing inequalities in socioeconomic conditions, the availability of preventive health services, and the social status of women.
“Women do share with us at times, incidents of white discharge, or prolong periods in such cases all we ask them is to go to a hospital in the city, what can we do for them while sitting in a village,” told Tulsi.
In India, the Bahujan community, which includes Dalits, Adivasi, and other backward classes, is more vulnerable to Cervical cancer. Based on research, it was discovered an increased risk of about 100% between high and low socioeconomic class categories for the development of invasive cervical cancer.
Dr Sylvia Karpagam, a public health doctor and researcher, explained how health or access to health is worse for marginalised communities and can be traced to multiple reasons. In terms of health itself, many social determinants are adversely affected due to one’s social location. Such marginalised communities are deprived of components like access to clean water, sanitation, education, access to information, and how far one is from the health centre, which directly affects the quality of care one receives.
“Access to health care also depends on your caste, on your occupation, your gender, how quickly you are seen and how easy it is for you to access health facilities how much you are investigated, and the quality of care you receive, so in terms of HPV, multiple factors operate,” Dr Sylvia pointed out.
The queer community in India also faces multiple barriers when it comes to accessing sexual health care.
“Sexual health and health concerns for queer and trans people are very precarious, specifically in the Indian context. If you are a trans Masculine person you are more prone to not getting insurance because they go through sex affirmative surgery and none of it is covered, so there are a lot of stigmas that are internalised among the queer and the transgender community. There are a lot of reservations for many to access sexual health care as Queer affirmative doctors are very few, and the ones available are expensive, there are a lot of stories of violence meted out in public hospitals and so a policy level change is required”, told Koyel Ghosh, Sappho for Equality, an organisation working for the rights and social justice of sexually marginalised women and transmen (female to male transpersons).
Access to HPV vaccines for such marginalised groups is also a distant reality, as the current HPV vaccines available in India, given in three doses, are prohibitively expensive. A vial of Gardasil costs Rs 3,927, and a vial of Cervarix costs Rs 2,640. The HPV vaccine has not yet been added to the Universal immunisation programme, which only makes the vaccine accessible to the wealthy.
While HPV vaccines are widely celebrated and regarded as a positive step forward for sexual and reproductive health, they are only one aspect of the solution. When it comes to detecting and diagnosing cervical cancer, cytological-Pap smear screening is critical. Cervical cancer incidence and mortality can be reduced by well-organised cervical screening programmes or widespread high-quality cytology. The cancer registry in India does not actively cover the entire country but rather collects data from a few urban and rural registries that have been established.
Dr Amar Jesani, editor, of the Indian Journal of Medical Ethics and Independent consultant, a researcher in bioethics and public health, explained that The vaccine protects against the HPV only up to 70%, there are 30% of the virus is not taken care of by the vaccine. In western countries, this vaccine was introduced after they had introduced universal access to screening. In India, there is no universal access to such screenings.
“So instead of putting the money into the universal screening programme, It seems like the government is banked upon putting the money into the vaccine,” said Dr Amar.
Dr Amar further explained that since the vaccine is only effective when given to young girls aged 9-14, we will only know if it is reducing carcinoma cervix or not after two or three decades, and only then will we be able to assess if it has brought down the rate or not. Where women over the age of 26 are still vulnerable to cervical cancer, and only screening can be the solution in such situations.
“Pap smear has been around for decades, but how many people are getting screened? Screening plays a major role in the detection of cervical cancer, if someone is getting screened every 3 years or 5 year, this cancer is preventable in them as well because the stages are precancerous and the treatment for that is a cone biopsy, removal of part of uterus which is known as cervix only that part is to removed and then you will be cured and you will not have cervical cancer and you continue with screening, but we are not getting routine screening,” explained Dr Tanvi.
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In conclusion, we can quote, “It is critical to strengthen our primary health care system; 72% of OBG positions at the community health centre remain vacant, I believe that is cheaper and strengthens the community in the long run and also provides the necessary facilities to spot cancer of the cervix, this [introduction of just the vaccine] is not a desirable public health intervention, this is a magic bullet approach and magic bullets don’t solve health problems,” as said by Dr Mohan Rao, former professor, Centre of Social Medicine and Community Health, Jawaharlal Nehru University.
Swati is a freelance journalist. Her work focuses on human stories that explore issues such as human rights and gender. She is eager to learn more about gender and hopes that her work will make a significant difference in society. Swati can be found on Twitter and Instagram. This story has been written under the Laadli Media Fellowship.
Featured image source: Gavi