Misinformation and stigma mar efforts to eliminate cervical cancer

India accounts for the highest number of cervical cancer cases in Asia, which is also ranked as the second most frequent cancer among women in the country. In 2023, 1,23,907 women were diagnosed with cervical cancer, of which 77,348 died from the disease in India. The global figures narrate a similar story with 6,60,000 new cases and nearly 350,000 deaths in 2022.

Cervical cancer is caused by infection with the human papillomavirus (HPV), a sexually transmitted infection, which can be prevented with vaccination and can also be cured if diagnosed at an early stage.

But how aware are people about the risk of cervical cancer? 

In early February 2024, Indian model and actor Poonam Pandey’s team said that she had died of cervical cancer. The announcement, which later turned out to be a stunt, was said to be aimed at “raising awareness” about the disease. 

Following this “campaign”, a flurry of posts on social media exposed the information gap with several making unscientific claims about a certain kind of food that can help prevent cervical cancer or how the disease only impacts those who have multiple sex partners. While in reality, the disease can impact anyone who is sexually active. 

A look at the data, published by the World Health Organization (WHO) in 2021, of women who get screened for cervical cancer revealed that fewer than one in 10 had been screened in the last five years. Globally, 370 million (36 percent) of one billion women between the age group of 30–49 years have been screened for cervical cancer in their lifetime. 

A Lancet report also highlights how the “roll-out of screening is very low in low-income and middle-income countries, where the burden of disease is highest.” Another 2023 study, involving 15 participants underscored that lack of knowledge, exposure to misinformation, and stigma led to hesitancy in disclosing diagnostic results amongst people in South Africa. 

So, as countries race against WHO’s 2030 deadline to eliminate cervical cancer, lack of awareness, misinformation, and the stigma around the disease act as a barrier. 

How Social Media Fuels Misinformation

A user shared a video on YouTube claiming certain types of food can help diminish the risk of cancer. Even though there is very limited evidence to support such claims. Another widespread claim states that avocado (shaped like a uterus) can help cure cervical cancer. Again, there is no evidence for it. 

Screenshot of a post claiming that avocado can reduce the risk of cervical cancer. (Source: Instagram/Screenshot)

Such falsehoods and incorrect information have posed a risk for both screening and vaccination. 

Dr. Pakhee Agarwal, senior consultant gynecologic oncologist at Apollo Hospital, told Logically Facts that such misinformation can lead to the “illusory truth effect” as people are repeatedly exposed to it. 

“Misinformation is a huge problem. It can cripple a program, it can put the wrong ideas and thoughts in the minds of people, and it will take us far away from our goals of eliminating cervical cancer, which the WHO says is a priority not just for South East Asia and India but for all countries who have a high cervical cancer rate,” she said.

However, misinformation is not just limited to the disease. Social media is rife with claims about how cervical cancer can be hereditary or how the pap smear test equipment is coated with ethylene oxide, which is a carcinogen. The claims eliminate the fact that sterilization of these equipments happen under safe limits. 

Another post on social media claims that the vaccine contains polysorbate 80 that can make women infertile.

Screenshot of Instagram post discouraging people from getting cervical cancer vaccine. (Source: Instagram/Screenshot)

Dr. Agarwal explained that polysorbate is a sugar compound and various pharmaceutical products, including vaccines, medicines and cosmetic products, contain the ingredients. 

“It stabilizes the vaccine and increases its shelf life making it accessible to people who might be in remote areas,” she said, adding “there is a lot of R&D that goes behind developing a vaccine and that goes on for years. There is no scientific evidence that it may make women infertile.”

However, misinformation is not the only hurdle. Stigma acts as a big barrier, too. While HPV is certainly a common cause of cervical cancer, it is not the only one. However, individuals often incorrectly assume that cervical cancer is infectious because of its association with HPV.

Highlighting how this stigma has added to the disease burden, Dr. Rishma Pai, consultant gynecologist at Lilavati and Hinduja Hospital said that even though the cause of cancer is known in the case of cervical cancer, people in India are not receptive to the HPV vaccine. 

“An entire generation has missed out on HPV vaccination; people who are in their 40s and above, they come now to ask about HPV vaccines, but even they are not receptive to vaccinating their daughters.”

Insistence on vaccination — Can it help eliminate cervical cancer? 

A new study published in the Journal of the National Cancer Institute in January 2024 found zero cases of cervical cancer in women vaccinated at a young age. It took into consideration the data of women born between January 1, 1988, and June 5, 1996, from the Scottish cervical cancer screening system in July 2020.

Such results are encouraging keeping in mind WHO’s 2030 goal.

“The fact that we have been able to link cervical cancer with a virus is a very big breakthrough in medicine. In most cancer cases, we don’t know the causation but here we know that 90 percent of cases are due to an infection that persists in the body and we have a vaccine for it which is not new, this was first licensed by USFDA in 2006. So take advantage of the vaccine and ensure prevention” said Dr. Pakhee. 

It is crucial for people to know that cervical cancer is both treatable and preventable. The vaccine works before people are infected with the disease. India is rolling out a HPV vaccination and announced that the vaccination programme will be for girls in the age group of 9 to 14 years for prevention of cervical cancer. 

(Edited by Kritika Goel)