Poonam*, aged 53, an anganwadi worker in a village in Gurugram, Haryana got herself screened for cancer of the cervix in early 2023.
“I wasn’t ill as such but some NGO workers encouraged many women to get screened, so I went too,” Poonam told IndiaSpend. “At the screening centre, I told the worker that I was post-menopausal but my period sometimes showed up very mildly (spotting).”
Poonam was put through the VIA, or visual inspection with acetic acid, test for cervical cancer, that involves applying a 5% dilution of acetic acid on the cervix and visual inspection of the organ minutes later. The VIA test is free at government health centres and quick but highly subjective.
“The health worker told me to get myself checked again in Gurugram because she suspected something was wrong,” said Poonam.
She subsequently underwent blood investigations, imaging studies and a biopsy, which confirmed a cancer of the cervix diagnosis. A grassroots worker from Cancer Awareness, Prevention and Early Detection, or CAPED, the nonprofit that had conducted the awareness drive to encourage women from Poonam’s village to access screening at the district health centre, helped her access care in a government hospital where she had laser surgery of the cervix.
Poonam’s cancer was caught early, so she didn’t need chemotherapy. But she understands that it could have been much worse. “My problem was so small but it turned out to be such a serious disease that many women suffer from,” she said.
Cervical cancer is the second most common female cancer in India – after breast cancer – accounting for 10% of all female cancers. Asia accounts for close to three in five cases of cervical cancer globally and a similar proportion of the deaths. India alone accounts for more than one in five of these cervical cancer cases and deaths. Every year, an estimated 77,348 women succumb to cervical cancer in the country.
It need not be this way.
In 2020, the World Health Organization set a 90-70-90 Cervical Cancer Elimination Strategy Target for 2030. Essentially, the target mandates vaccinating 90% of girls with the human papillomavirus, or HPV, vaccine by the age of 15, screening 70% of women with a high-performance cervical cancer test by 35 years of age and again by 45 years of age, and treating 90% of women identified with cervical disease. HPV is associated with pre-cancerous lesions that may become cervical cancer but a preventative vaccine exists.
Where does India stand in achieving these targets?
“The absence of a cohesive strategy for the elimination of cervical cancer and the fact that the existing resources are scattered stand in the way of India bringing down its cervical cancer mortality,” said Mathangi Ramakrishnan, head, Communications and Program Strategy, CAPED.
Lack of awareness a major barrier
Poonam now avidly shares her experience with women, hoping to help others save themselves from cancer. “Some women aren’t aware, some women don’t pay attention to themselves,” she said.
Screening is strongly recommended and very important because “most women are asymptomatic even after they develop pre-cancerous lesions”, said Rohit Ranade, consultant gynaecological-oncologist and robotic surgeon, Mazumdar Shaw Cancer Centre, Narayana Health.
Fewer than one in 10 women in India have been screened for cervical cancer in the last five years, according to the World Health Organization.
The HPV Information Centre, which compiles, processes, and disseminates country-specific information related to HPV and cervical cancer for the International Agency for Research on Cancer, a specialised cancer agency of the World Health Organization, reckons only 2% women in India have been screened for cervical cancer.
Low screening impacts both cervical cancer treatment as well as the survival rates.
A new study published in the Lancet in October showed a wide variation in cervical cancer survival in 11 centres across India. Whereas the five-year age standardised relative survival rate was 61.5% in Ahmedabad urban, the rate dropped to 31.6% in Tripura.
While the Lancet study authors did not assess the performance of the health systems, and hence, could not associate the variation in survival rates with any regional screening programme or with the ease of availability of treatment for cervical cancer in different regions, the lead author Prashant Mathur, director, National Centre for Disease Informatics and Research, Indian Council of Medical Research pointed out to IndiaSpend that earlier studies have shown inadequate screening rates for cervical cancer.
“While screening for cancers of the cervix and breast [in females] and oral cancer under the National Programme on non-communicable diseases is ongoing in districts across the country, efforts to improve its uptake are being made through awareness campaigns,” added Mathur.
We asked the National Health Systems Resource Centre about measures to improve cervical cancer awareness and screening but have not received any reply so far.
A 2020 survey by CAPED showed that of 1,305 respondents, only 45% are aware of cervical cancer and only 34% are aware that cervical cancer occurs in the uterus. Also, 73% women have never taken a vaccine to prevent cervical cancer nor a PAP test for cervical cancer, mostly due to lack of guidance and knowledge.
A PAP test, short for papanicolaou test, named after Georgios Papanikolaou the Greek physician who invented the test in the 1920s, involves taking a few cells from the cervix and testing those for being precancerous or cancerous.
CAPED creates cancer awareness and mobilises the community to avail the screening service with the government district health authorities.
“We do two days of awareness and mobilisation and host a screening camp on the third day, which is conducted by the government,” explained Mathangi. “Our team remains on hand to coordinate the logistics and support patients. We prefer to work with the government so that women get introduced to the government screening facility and know where to go or where to advise a neighbour or a friend to go when they are in need at a later date.”
Mathangi also believes that the lack of a robust national guideline is holding back cervical cancer screening. “The National Tuberculosis Elimination Programme and the National AIDS Control Programme have robust guidelines that have helped make inroads in the spread of those two diseases,” she said. “We need a similar programme for cervical cancer because the available guidelines on age and frequency aren’t consistent. We also need skill upgrades to bring staff at the last mile up to speed.”
“With the strengthening of health and wellness centres, screening shall see considerable improvement,” agreed Mathur.
“If the budget is available, we should consider a better test to VIA,” Mathagi added. “HPV DNA would be ideal but if not possible, even a PAP is more effective than VIA.”
Where women are aware of HPV and its mode of transmission, “the stigma associated with HPV because it is sexually transmitted” becomes a problem, “because women tend to hide the fact that they have an HPV infection”, said Vandana Jain, gynaecologic-oncologist and robotic console surgeon, Rajiv Gandhi Cancer Institute and Research Centre, Delhi.
“Sex education covering safe sex practices could help change attitudes,” said Jain. “Also, women should know about the risk factors associated with the disease. For instance, smoking is a co-factor for cervical cancer because it impedes the natural resolution of HPV by the body’s immune system.”
Vaccine delay
Infection with the HPV has been established as a major cause for the development of cancer of the cervix, by the International Agency for Research on Cancer. HPV is contracted through sexual contact, and HPV infections are quite common, with three in four sexually active adults likely to be infected with HPV by the age of 45.
However, some variants of HPV are more likely to cause cancer. For instance, in India, types 16 and 18 alone or in co-infection with each other have been seen to cause more than 75% cases of cervical cancer.
Vaccination is considered the best protection against HPV, especially if it is given before any sexual engagement.
A study published in 2020 in the New England Journal of Medicine showed that among Swedish girls and women aged 10 to 30, the vaccine substantially reduced risk of invasive cervical cancer. If the vaccine was administered before the age of 17, the risk reduced 90%.
Two HPV vaccines are available in the market in India – Gardasil marketed by Merck, and Cervavac, a made in India vaccine marketed by the Serum Institute of India.
With a single dose of Cervavac, the cheaper of these vaccines, priced at Rs 2,000, the cost of two doses for effective cover is still considered too high to be affordable by the masses. To protect women at large, India would need to include the HPV vaccine in the Universal Immunization Programme.
In December 2022, the National Technical Advisory Group for Immunization recommended the introduction of the HPV vaccine in the Universal Immunization Programme. Globally, about 96 countries have included the HPV vaccine in their immunisation programmes.
The HPV vaccination drive in India is slated to happen through government schools, which could be the best mode considering the wide dissent that followed a pilot rollout of the HPV vaccine by the not-for-profit PATH in the states of Gujarat and Andhra Pradesh in 2010, when six of about 14,000 vaccinated adolescent girls died. PATH had clarified that the deaths were not attributable to the vaccine. Nevertheless, the programme was called off.
Now, authorities said that the inclusion of the HPV vaccine in the Universal Immunization Programme has been sanctioned but they are working on the modalities.
“We’ll start the rollout when we have enough vaccine available, when we are ready for it,” Veena Dhawan, Additional Commissioner (Immunization), Ministry of Health & Family Welfare told IndiaSpend.
Serum Institute of India currently has an annual production capacity of about two-three million doses of Cervavac, according to a company source. The company is working on increasing this capacity to 60-70 million doses per annum, in phases, but the scale up is only likely to happen by 2024. A company source also confirmed that Serum Institute of India is in talks with the Union government to include Cervavac in the Universal Immunization Programme.
Since the government is dependent on a provider of low cost vaccines, the sooner the production expansion happens, the faster lives will be saved.
Expensive treatment
Low awareness impedes not only screening for cervical cancer but also access to treatment for the disease. Women aren’t aware of the common symptoms of cervical cancer such as white discharge, excess bleeding during a cycle and post-coital bleeding, said Ranade.
Consequently, women tend to approach a doctor only when the cancer is fairly advanced. “About 70% of the cases we see are in the advanced stage of the disease,” continued Ranade. “The actual proportion may vary from institution to institution but the majority of cases are still in an advanced stage. This makes it challenging to prevent deaths due to cervical cancer.”
In the early stage of cervical cancer, surgery is an option and the cure rates are excellent, explained Ranade. “But few hospitals offer radical hysterectomy which is the standard of care for an early cervical cancer.”
Gynaeco-oncology is a specialised area and well established in the private sector but such specialists aren’t available in smaller private hospitals and even government hospitals in cities, agreed Jain. “About 10-12 of every 15 patients I see have missed the window of opportunity for early treatment by surgery.”
If the cervical cancer is advanced, the treatment protocol typically involves chemotherapy and radiation therapy, both of which are long-drawn procedures that are hard to withstand physically as well as mentally, added Ranade. “Also, radiation therapy is only available in a few centres.”
The cost of care can come in the way of women accessing treatment. “Government schemes such as Ayushman Bharat can help but some patients still opt for care in the private sector, which is expensive,” said Ranade.
A 2020 study by the Post Graduate Institute of Medical Education and Research, Chandigarh in North India found that nearly 62% patients incurred catastrophic health expenditure to avail treatment for cervical cancer, and 30% reported distress financing. The study estimated the health system cost for different cervical cancer treatments–radiotherapy, brachytherapy, chemotherapy and surgery – to range from Rs 19,494 to 41,388. Further, patients spent Rs 4,042 to 23,453 as out-of-pocket expenditure.
That’s why Jain insists that “the ideal is to catch suspicious cases early, for which we have to work as a society, it has to be a combined effort”.