At 43, Surbhi* encountered a new facet of pain: heavy menstrual bleeding, severe cramps, spotting after sex. Doctors assured her these were ‘peri-menopausal’ symptoms, and there was no mention or question of a pap smear. She consumed whole strips of anti-spasmodial medication each month as aches grew in intensity. “We don’t really talk about these issues, so I just ignored the pain.” She was diagnosed with cervical cancer two years later.
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Cancer of the cervix is wildly common, killing one woman every eight minutes. Then there is breast cancer, which in 2020 surpassed lung cancer to take the title of most diagnosed cancer in the world. If trends continue till 2030, the number of women who get cancer and who die from it will rise by at least 25% in India. These numbers baffle researchers, partly because they are bold, and mostly because they defy the logic of medicine. Women’s cancers are not new maladies marked by contagion, evolution has not made women cancerous, and some cancers are entirely preventable. Still, why are we losing so many new women to cancer in some parts of the world?
“[Women’s cancers] are less prioritised, there’s less backing to it, there is less awareness and there is limited understanding,” says Mridu Gupta, co-founder of CAPED India, an advocacy group. A new report by APAC Women’s Cancer Coalition scrutinises the gender question. The ‘significant and rising’ threat of breast and cervical cancer among women in the Asia Pacific region is marked by “inadequate or inaccessible screening and vaccination programmes and socioeconomic causes including stigma and lack of awareness”, which impact cancer incidences, care and treatment among women. But a pervasive, invisible social context has also given heft to this threat, a scenario where financial dependence, caregiving responsibilities, societal norms that stigmatise women’s pain form the jagged contours of women’s experiences of cancers.
Gender has an unequivocal role to play, Ms. Gupta adds. “Can you imagine losing a man every eight minutes to a preventable disease and no one’s doing anything about it?”
The stigma of women’s cancers
About nine million new cases of cancer occurred globally in women in 2020; breast cancer, along with cancers of the reproductive parts (cervical, ovarian and uterine), accounted for a combined 38.9% of cases. Changing demography — an ageing population and altering reproductive patterns — is pushing breast cancer cases in low- and middle-income economies; India has seen a 40% increase in the past two decades. Besides overweight and obesity being more common in women, research has found moderate consumption of alcohol to be associated with an increased risk of breast cancer. At least 105.4 per 1,00,000 women were diagnosed with breast cancer, according to the Indian Council of Medical Research’s 2022 bi-annual report, which covered only 10% of India’s population.
But the numbers present a small fraction of the real case burden. Some are never registered, “some drop out of the adherence to treatment... some [families] give up because the woman is too old, and they don’t want her to go through it,” Ms. Gupta explains. In most cases, women don’t reach the point of diagnosis. The National Cancer Registry Program in 2020 estimated one in 29 Indian women would develop cancer in their lifetime, and breast cancer cases would dominate. But only one-third of women will get a timely diagnosis. The trend was reflected in a 2022 Lancet Oncology study: fewer girls than boys in India received a cancer diagnosis between 2005 and 2019; the ‘bias’ towards boys was higher during the registration of cases and diagnosis, and in situations demanding greater financial resources.
“So many positive [cancer] cases never go forward,” says Ms. Gupta. She estimates our actual numbers to be significantly higher than what we see, “but what we see an alarming enough”.
A complex interplay of individual, social and structural barriers contributes to this data gap. Women’s cancers are a subject of taboo, as if an Omerta code veils all conversation about women’s pain and reproductive bodies. “The whole imagery of women’s health in India is completely askew -- because they are not making decisions for themselves,” explains Ms. Gupta. Anecdotes, numbers, and studies illustrate the constricted ways women approach healthcare; their ‘decisions’ are shaped in response to family needs, gender expectations and budgetary constraints. “As a patriarchal society, we put the woman on a pedestal: we think her suffering -- be it childbirth or periods -- is a strong thing. They almost feel guilty to admit they are not feeling well... or if they can’t handle the pain.” Some countries that rank the lowest on the Global Gender Gap Index are also those with cervical cancer as the topmost cause of death among women. Patriarchy also normalises a scenario where a caregiver’s ailment is seen as a threat. An ‘early onset’ breast cancer diagnosis, for instance, will end up “with either the women being abandoned, or pushing the family into an intergenerational cycle of poverty”, the APAC report notes.
“Most women don’t go to the doctor for ‘tiny things‘...if they’re ‘feeling’ perfectly fine.”Mridu Gupta, CAPED India
Moreover, restrictive cultural norms attach ‘shame’ to women’s bodies, making it difficult to recognise changes in one’s own body, says Shivangi Shankar, a doctor and public health professional. “There are women who hesitate to seek help despite recognising, say, that there is a lump in the breast. This causes a delay and may lead to progression of the cancer.” More often than not this stigma translates into delayed diagnosis, where early symptoms, like Surbhi’s menstrual problems, are missed and considered sexual or reproductive problems.
Time is of high value in cancer management. Cervical cancer can be completely prevented: a health check-up, even once in a decade, can help with early detection, says Ms. Gupta. But women’s time rarely belongs to them entirely.
Low levels of screening
Seeking a cancer diagnosis is an onerous task that demands money, time, and even, childcare support. Data, from the National Family Health Survey and other studies, indicate that as many as 60% of women face trouble accessing healthcare for themselves; at least 23.2% of women cited distance to hospitals as a concern, 13.5% of them were refused permission to get medical help. Under the Ayushman Bharat Digital Mission, each family gets a ₹5 lakh cover. In most cases, however, women tend to ‘save’ this balance. “Maybe it is for her husband who has diabetes, or her daughter-in-law is going to give birth. She will save that money for everybody else, but she will not go for herself,” says Ms. Gupta. Literature concurs that wherever healthcare adds to a family’s out-of-pocket expenditure (which is pushing at least 55 million Indians annually into poverty, says WHO), women’s maladies are often ignored.
Low awareness remains the most dogged frontier, where the knowledge that say, a human papillomavirus (HPV) infection or genes can cause cervical cancer, is missing due to a lack of sexual education, social dogmas and limited health literacy. Cervical cancer screening is covered by the Ayushman Bharat Scheme, but doctors acknowledge there is a fear and anxiety around screening procedures, often conducted in chaotic, densely-populated government hospitals where women contend with the fear of “being judged for lack of modesty”.
Women can’t protect themselves against a disease they don’t know, and one they don’t understand. Health experts thus rally around strengthening prevention (for cervical cancer through the HPV vaccine) and screening efforts (for breast and cervical cancer), thus moving the point of diagnosis closer to women. However, the APAC report found “inconsistent adoption of both organised, population-based national-level immunisation and screening”; there was no “organised” mammography screening for women aged 50-69 years, it had limited uptake (it fell below 30% in India) and in other cases, screening drives lacked the equipment required. A similar story plays out for cervical cancer. Screening involves pap smears, visual inspection under acetic acid (VIA) and HPV DNA testing, considered to be ‘gold standard approaches’. However, coverage remains low due to “sub-optimal primary and secondary prevention, and access barriers including stigma, lack of awareness and cost.”
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For cervical cancer, the World Health Organisation has a 90-70-90 target to achieve by 2030: 90% coverage of HPV vaccination for girls under 15; screening 70% of women by age 35; treating 90% of women with pre-cancerous lesions. Meeting them will increase women’s well-being and autonomy, participation in the workforce all while while lifting familial and community health, the WHO predicts. India’s progress so far is marginal: less than 1% of women have taken the HPV vaccine (affordability, awareness and accessibility remain concerns); only 3.9% of women are screened; there is no data on screened-positive women who have undergone treatment. India is currently in the middle of the first part of a three-phase national HPV immunisation programme, aiming to vaccinate almost 11.2 million girls annually by 2025. Ms. Gupta explains 90% of girls will only receive the vaccine when the government rolls it out at a subsidised cost or as part of national immunisation. “We are far away from these goals.”
“Overall, estimates show the percentages of women who have ever undergone cervical, breast, and oral cavity screening in India stands at 1.9%, 0.9%, and 0.9%, respectively. ”
Organised, population-based screening thus counters the geographical barriers and social stigma women face in accessing diagnostic services. “We have to create behaviour change in women, but we also have to get support from the top to make it easy for women to access healthcare.” Seeing how women’s health-seeking behaviours are shaped by social norms, experts recommend clubbing the woman’s health interactions with that of the family’s: such as including women’s cancer services in existing family planning programmes, combining HIV and cervical cancer programmes, or simply conducting simple breast examinations alongside other check-ups.
Gaps in treatment
Gender norms, insufficient guidelines, and the “limited spending on breast and cervical cancers in most countries” further deter cancer treatment among women. India’s official National Cancer Control Programme doesn’t offer guidelines for the interim period between diagnosis and initial treatment -- most women grasp information about cost, procedures, medicines or how their quality of life will be impacted.
Nearly 70% of cervical cancer in India are diagnosed at an advanced stage, which exaggerates the complexity of the disease and brings down the chances of survival. Late diagnoses have a cascading effect: they add to the direct cost of treatment as well as indirect costs such as productivity and increased sickness.
A Lancet study found cervical cancer patients spend between ₹4,042 and ₹23,453 out of their pockets, a cost which proves to be ‘catastrophic’ for nearly 62% of the patients. High OOPE translated into fewer women seeking cancer treatment: they avoided taking treatment if the hospital or treatment centre was 100 kilometres from their house, or if expensive therapies like stem cell treatments were being done at private hospitals.
India’s less than 3% expenditure of its GDP on healthcare shows: 96% of OOP spending on all cancers goes towards non-medical indirect costs. Diagnostic services like mammography and CT scanning are not generally available in local PHCs. The report found that for every 10,000 cancer patients, India has 5.4 external beam radiotherapy machines, 23.3 mammograms and 73.4 CT scanners and 17.5 MRI scanners. Mapping the workforce, there are about 346 radiologists, three radiation oncologists and 273 surgeons per 10,000 patients.
““We are still where we were two decades ago, as we haven’t kept abreast of developments. We haven’t really put in any investments to bring about the latest technologies or the latest therapies. They don’t exist in the government space in public healthcare at all.””Mridu Gupta
Cancer is a costly affair, and not entirely scaleable at public health. But experts concur that increased financial commitment can have a cascading effect: it could take vaccines and screening to women, slowly build confidence and literacy and help challenge social norms that have so far governed women’s health-seeking behaviours. “Everyone talks about treatment, about new cancer hospitals and infrastructures,” says Ms. Gupta, “but if you decentralise cancer care, and bring it down to the district level, it can be managed better”, negating the need to enter expensive tertiary care for some cancers that are screenable and preventable.
A focused government policy
ICMR includes breast, cervical and oral cancers under the non-communicable disease (NCD) umbrella, guidelines for which are mentioned in the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Disease and Stroke (NPCDCS). The NPCDCS regulates the functioning of NCD clinics at local and community health centres, which includes regular cervical screening as part of the Ayushman Bharat scheme.
The guidelines, while noting the prevalence of these ‘common cancers’, lack structure, strong implementation policies and fall short in acknowledging the gender-specific risk factors. Population-based cancer registries in India at present cover less than 15% of urban areas and 1% of rural populations, with marked gaps in women and girls’ cases. Despite women’s cancers being included in government frameworks, “[guidelines] may not necessarily be translated into accessible care for women due to low awareness as well as societal norms,” Dr. Shankar adds. The Operational Framework Management of Common Cancers was last updated in 2016, and does not mention gender-based risk factors. The PBCRs or hospital-based cancer registries also do not demarcate breast cancer or cervical cancer-specific cases. A dedicated strategy solely for breast cancer, or elimination targets for cervical cancer, are both absent. The report adds that while the NPCDCS charges local centres with reporting cases, it lacks a long-term surveillance system to “monitor effectiveness and impact of interventions and activities for cervical or breast cancer control”.
Moreover, cancer in itself needs to be looked at differently instead of being clubbed with NCDs. “It’s a beast of its own: it grows much faster, it’s very rapid, it needs to be addressed immediately,” says Ms. Gupta. There is also a growing consensus for making breast and cervical cancer a notifiable disease — such as tuberculosis and other non-communicable disease. “The minute a disease becomes notifiable, you have a team that works for it, somebody is monitoring it, there is a real-time update on what’s happening, where it is, how to control it, how to manage it, so managing the disease becomes easier,” says Ms. Gupta. “It would help in the sense that India would understand the urgency and immediacy of doing something for [women’s] cancers.”
What has India done?
‘Need more women at the table’
A blind spot sits in most countries’ cancer guidelines: one concerning the quality of life for cancer patients and survivors, or that of palliative care. Research shows that in low- to middle-income countries, early-onset cancer impacts women more closely and deeply than men -- in terms of both deaths and subsequent poor health. Yet, official guidelines or public health are far from incorporating areas like fertility preservation, breast reconstruction or mental health that are critical for managing the impact of invasive treatments.
Surbhi is 11 years into remission now, but possibly the most “devastating” thing that remains are the psychological scars: the fear of recurrence, the shame, the guilt of feeling the pain. Or, how does one rebuild confidence after a mastectomy? How do they see their sexualised and still stigmatised reproductive body parts? She muses: “We rarely talk about ‘women’s health issues’ or are advised to swallow a pain killer and get on with it. ...For some, it may be too late.”
These are important nuances, and their neglect is itself a symptom of the state of women’s health and women’s representation in healthcare, says Ms. Gupta.
The HPV vaccine’s story in India attests to this neglect: research attempts to manufacture a cervical cancer vaccine were nipped in the bud as tuberculosis and polio shone in urgency. Or take India’s resistance to include the HPV vaccine as part of its National Immunization Schedule, which offers necessary vaccines such as tetanus or hepatitis to children and pregnant women free of cost (the vaccine is included in 71 countries’ routine vaccination programs, per WHO recommendation). HPV vaccines have remained outside the Schedule due to monetary constraints, experts say. The healthcare weighing scale then measures the cost of a disease that impacts the entire population against one that is limited to women, never acknowledging the invisible hand that patriarchy plays in tipping the scale.
“Women are not there in policymaking... We need to bring more women to the table, get them to participate clinical trials, to be part of decision-making.” Women need to be present at the table for their voices to be heard and their lives to be seen. These are invaluable perspectives, with experts arguing for the need for a “whole-person” approach could help manage women’s cancers with care and caution -- where the malady exists not in silos, but constantly interacts with social, economic and cultural factors. This could reform the fiscal space for women’s cancers, which “can have a significant impact on policy prioritisation and the ability of governments to achieve their targets”, the report notes.
Ms. Gupta doesn’t have to wrack her brain to dream of cervical cancer’s end in India. “Give it 10 years of screening and vaccination [at WHO standards of 90-70-90], and you would have eliminated cervical cancer from India as well. But... we continue to lose a maximum number of women to this, and that fact is rooted in gender inequality.”
Published - September 23, 2023 12:13 pm IST
