Introduction
Cancer is a leading contributor to mortality worldwide with approximately nine million
deaths in 2020.[1] India accounted for an estimated 7% of cancer cases worldwide with common cancer
sites in the breast (14%), lip, oral cavity (10%), and the cervix uteri (9%).[2] Further, the highest estimated mortality rates were due to cancers of the lip, oral
cavity (13%), lung (11%), and esophagus (8%).[2]
India has a diverse sociocultural population with unique habits and dietary practices;
the incidence of cancers varies geographically due to the interplay of the genetic
determinants and environmental factors.[3] The Northeast (NE) region[i] lies on the Eastern border of India and is inhabited by indigenous communities distinctive
by a complexed transition zone of cultural, ethnic, religious, and linguistic diversity.[4] Further, these populations share their genomic pool with the southeastern region
of China where nasopharyngeal carcinoma (NPC) is common. Comparatively, the incidence
of NPC is higher in the NE region than in the rest of country.[5] Furthermore, there are higher incidences of specific types of cancer, such as the
departure in the leading cancer site among males from the NE region to the rest of
India (ROI).[6] Cancer of the esophagus is the common cancer site in the NE region compared to lip
and oral cancer in ROI.[6]
Given the high incidence of cancer in the NE region with distinct clinical presentation
compared to the rest of the county, this article highlights issues on cancer burden
and the disparity in the cancer care delivery, and discusses ways to address the same.
Cancer Burden in Northeast India
Cancer Burden in Northeast India
The NE region is the cancer hub of India, with the highest incidence of adult cancers
of the upper aerodigestive tract[ii] (UADT) among both sexes worldwide.[7]
[8]
[9] The highest cancer incidence from the NE region is from Kamrup Urban District in
Assam, with the cancer of the esophagus being the most common among both the sexes
(28.1% in males vs. 39.3% in females).[7]
[9] The major contributors to UADT are related to the consumption of tobacco—oral or
smoking—alcohol, food habits such as consumption of betel quid, smoked meat, low intake
of fruits, infection with Epstein–Barr virus, and poorly ventilated houses.[7]
[8]
[9] Reporting on tobacco consumption among the patients diagnosed with UADT, Kataki
et al highlighted that 82% of the patients had tobacco habits, with male patients
consuming more than female patients (88.1 vs. 63.2%).[8] To put things in perspective, the median age for esophageal cancer among males is
56 years in the NE region compared to 62 years in the ROI.[6] Similarly, the onset of breast cancer is earlier among females from the NE (47 years)
than in the ROI (54 years) due to genetic predisposition and high prevalence of triple-negative
breast cancer.[6]
[10]
Apart from cancers of the UADT, the unique sociocultural elements of the NE region
also contribute to site-specific cancers. The cancer of the cervix was the leading
cancer site for females in Nagaland, Mizoram, Arunachal Pradesh, and Tripura.[9] Despite the known risk factor of infection with HPV-16[iii] and HPV-18 for the cancer of the cervix, it is implied that the causal factor is
multifaceted given the resource-constrained setting to receive timely medical care.
The state of Arunachal Pradesh had the highest alcohol consumption in the country,
leading to the most number of liver cancer cases in the NE region.[9] The cancers of the stomach were found to be highest in the state of Mizoram and
attributed to cultural food habits such as the consumption of smoked meat and fish,
fermented pork fat, and the use of alkali in food.[9] Similarly, given the geographical location of Assam with the presence of waterbodies
(e.g., Brahmaputra), the incidence of cancer of the gall bladder was the highest in
the NE region. These were attributed to the presence of cadmium, iron, and lead in
the local waterbodies, pesticides, and adulterants in mustard cooking oil.[9]
Systemic and Infrastructural Challenges to Cancer Care in Northeast India
Systemic and Infrastructural Challenges to Cancer Care in Northeast India
On a systemic level, Ngaihte et al reported that the NE states have inadequate hospitals
to cater to the region's high incidence of cancer patients.[11] They highlighted that the number of cancer-treating hospitals in a given state did
not equate to seeking treatment in the same. Similarly, the lack of trained medical
professionals and services drove patients diagnosed with cancer to seek medical treatment
out of state. For instance, the states of Arunachal Pradesh, Manipur, Sikkim, and
Tripura have only one cancer-treating hospital, each with very few radiotherapy facilities.[12] It was estimated that 5% and 42% of the patients from Sikkim and Nagaland seek treatment
from within the NE region, respectively. Further, 95% of the patients from Sikkim
avail treatment from outside the NE region as compared to 58% from Nagaland.[6] The ramification of poor infrastructures is such that there are delayed diagnosis
and treatment, early mortality from treatable cancers, and out-of-pocket expenditure
(OOPE).[6]
[9]
[13]
The Burden of Out-of-Pocket Expenditure in Cancer Treatment
The Burden of Out-of-Pocket Expenditure in Cancer Treatment
Given the poor infrastructure, patients have to avail out-of-state treatment, resulting
in expensive OOPE. In India, the mean monthly OOPE in the year 2017 to 2018, for patients
diagnosed with cancer, was Rs 6,549 and Rs 8,811 for inpatient and outpatient care,
respectively.[13] The NE region had the highest monthly OOPE in inpatient care at Rs 11,105, followed
by South India at Rs 9,834. Further, the healthcare burden was highest for patients
opting for private hospitals (58%) to public hospitals (63%), with patients from the
South and NE regions reporting the highest from outpatient visits.[13] This expenditure weighs heavily on the families too. For an individual diagnosed
with cancer, a family's financial support plays an important role in the continuity
of cancer care. For instance, most of the patients had to depend on their earnings
and savings to pay for health services. Additionally, to pay for the inpatient care,
the patients and their family had to borrow from others or sell their possessions.[13]
With the roll-out of the world's largest comprehensive national health insurance scheme
(Ayushman Bharat—Pradhan Mantri Jan Arogya Yojana) in 2018 for the disadvantaged socioeconomic
population of the country, accessibility to healthcare services is made available.
This health insurance scheme covers secondary and tertiary care hospitalization at
Rs 5 lakhs per family per year in empaneled private and public healthcare services.[14] Presently, cancer schemes such as the Chief Minister's Free Cancer Chemotherapy
Scheme by the state government of Arunachal Pradesh provide its residents with free
consultation and medicines worth Rs 10 lakhs per patient in a year. The Government
of Tripura provides a pension scheme for cancer patients of Rs 600 per month. As part
of the Assam Arogya Nidhi, the Assam government covers cancer treatment, such as chemotherapy
and radiation, for families below the poverty line by providing financial assistance
up to Rs 1.5 lakhs.[15]
[16]
[17] However, other NE states need to step up and allocate funds for cancer treatment
to lessen the financial burden. Further, patients with health insurance also face
challenges when the high cost of cancer care exceeds the limit the insurance provider
gives.[13] Additionally, besides the medical expenses of the patient, the primary family caregivers
also have untold nonmedical expenditures related to travel, food, and accommodation,
which are not covered by health insurance plan and incurred more if the treatment
is availed out of town. Parallel to the fund allocation, there is a need to focus
on early prevention and screening interventions as cancers with high incidence and
mortality, such as the oral, cervix uteri, and the breast, are preventable through
early detection.[18]
Early Prevention and Screening Interventions to Reduce the Cancer Burden
Early Prevention and Screening Interventions to Reduce the Cancer Burden
Low health literacy is associated with limited awareness about cancer screening, the
lack of desire for screening, difficulty in understanding screening guidelines, perceived
barriers in accessing and navigating the healthcare system, and difficulty in treatment
decision-making.[19]
[20] A study from the NE region reported that despite the high incidence of tobacco-related
cancer, almost half (41%) of the participants were unaware of oral, mouth, or tongue
cancer. Further, awareness of cancer screening was also low (34%).[18]
The National Family Health Survey (NFHS-5; 2019-2020) found that Assam, Nagaland,
and Tripura had the lowest cervical examination within the NE region.[21] For breast examination, attendance was lowest in Sikkim, Nagaland, and Arunachal
Pradesh.[21]
[22] Assam, Nagaland, and Meghalaya recorded the lowest for oral cavity examination among
females.[21] For females, screening attendance was better in urban areas. However, for oral cavity
examination among males, uptake was better in rural areas, with Tripura and Nagaland
reporting the lowest attendance.[21] On a national level, Mizoram ranked third in cervical and breast examinations, while
Sikkim was placed second for oral cavity examination.[21]
Given the dearth of studies reporting from the NE region in understanding uptake and
barriers to screening behaviors, studies from other parts of the country show that
Indian women were reluctant and disappointed to participate in cervical screening
as they had no symptoms but had expected treatment for other health-related issues
for which they were experiencing symptoms.[23]
[24] Consequently, it is possible that negative or unmet expectations may result in dissuading
women from participating in future screening programs or follow-ups. Likewise, higher
rates of loss to follow-up have been found when diagnostic follow-up with colposcopy
or biopsies was not given on the same visit.[25]
[26] Therefore, a “screen and treat” at the same visit proposal was made to minimize
delays and loss to follow-up. These findings suggest that it is important to consider
individual experiences, knowledge, expectations, and cultural differences in cancer
screenings.
Cultural adaptation to awareness campaigns and interventions on tobacco control, alcohol
abuse, and risks of certain ethnic food habits should be implemented through media,
counseling, and local support.[9]
[23] Given the significant investments in financial resources, workforce, and substantial
work to organize and sustain screening camps and programs to improve health services,
a need to involve a variety of stakeholders (e.g., family members, social scientists,
public and private healthcare partnerships) becomes imperative for the successful
implementation of screening programs and health campaigns.
Role of Family in Cancer Care
Role of Family in Cancer Care
Given the high incidence of cancer in the NE region, the family's role is pivotal
in supporting its family member diagnosed with cancer. It is observed that the participation
of the primary family caregiver(s) in the consultation helps improve communication
with the physician(s), adhere to the treatment regimen, and yield improved health
outcomes.[27] Further, the involvement of the primary family caregiver(s) in the cancer trajectory
acts as a gatekeeper in safeguarding prognosis and treatment-related information based
on the response by the patient.[27] Apart from medical-related support, the family plays an important role by providing
financial assistance and addressing the psychosocialconcerns of the patient. For instance,
Imchen highlighted the emotional support of the family as a contributing factor to
resilience in the patient which resulted in adherence to the treatment regimen.[28] Given the collectivist nature of the society, the family and the community serve
as a buffer for the patient to fall back to and collectively share the pain and hold
space when transitioning from treatment to palliative care.
Navigating Healthcare Services in Nagaland—A Special Reference
Navigating Healthcare Services in Nagaland—A Special Reference
Among the NE states, Nagaland is observed to be one of the highest per capita burden
of cancer.[6] The cancer of the nasopharynx is reported to be the highest in the country.[9] This is attributed to the presence of a genetic risk possibly hinted toward the
southeastern region of China, widespread consumption of tobacco, food habit that includes
smoked meat and fish, and poorly ventilated house.[5]
[9] Despite the high cancer incidence in the state, the public health infrastructure
is underdeveloped. This includes a lack of trained workforce and a lack of tertiary
healthcare facilities, such as an absence of a medical college (the only state in
India), a state cancer institute, and a regional cancer center. Further, there is
only one radiotherapy facility in the six cancer-treating hospitals and the absence
of a positron emission tomography scan in the entire state.[6]
Consequently, there is a general sense of mistrust in the general public when it comes
to availing public healthcare services, with preference given to private healthcare
services, especially for tertiary healthcare. Most tertiary healthcare services are
availed out of the state, posing practical challenges.[29] While some cases are referrals made by the physician to other hospitals out of the
state, most individuals have to navigate the healthcare systems by themselves. Such
individuals and their families often have to rely on word of mouth from family, friends,
and relatives to choose the physician and the hospital.
Furthermore, Imchen reported that the OOPE by the patients during their treatment
surpassed their annual household income.[28] A patient with an annual household income of Rs 70,000 spent Rs 5,00,000 in their
treatment expenses.[28] This complex pathway to accessing health services led to delayed diagnosis and expensive
treatment processes with poor health outcomes.
Responding to the dire need for appropriate healthcare, on August 2018, the Government
of Nagaland signed a Memorandum of Understanding with Tata Trusts to implement a program
for providing a comprehensive tertiary cancer care center in the state capital.[30] The main agenda is making cancer care in the public health system more accessible
and affordable.
Way Forward to Address the Cancer Burden and Disparity in Cancer Care Delivery
Way Forward to Address the Cancer Burden and Disparity in Cancer Care Delivery
Hub and Spoke Model
Given the pooling of healthcare services in places of commercial and political importance,
there is a polarization of accessibility to healthcare with the marginalized and low-income
groups being affected the most. Further, the country's scattered geography and multicultural
population poses a challenge in implementing quality health systems. Therefore, there
is a proposal to adopt a hub and spoke model in healthcare.[31] This model is based on a centralized hub that hosts tertiary healthcare services.
On the other hand, the spokes oversee the primary and secondary healthcare services.
In this manner, resource allocation is optimized while minimizing cost, a key feature
that is important for low- and middle-income countries.
Patient Navigation
To address the growing concern of unequal cancer burden in the country, Tata Memorial
Center, a premier cancer center in India, in collaboration with the Tata Institute
of Social Sciences, developed a full-time, 1-year Post Graduate Diploma in Patient
Navigation (KEVAT).[32] It seeks to implement a similar template in the resource-constraint Indian health
system scenario by providing a structured form of access and care for the patients
in their cancer trajectory. A first of its kind in the country, KEVAT was launched
in the year 2018. The patient navigation program attempts to create a workforce to
help the patients diagnosed with cancer and survivors to access care, navigate the
complex health systems, consult with the team of physicians, treatment, rehabilitation,
insurance, and palliative care.[32] Further, the patient navigators help to create a buffer to the ever-growing load
on the healthcare professionals.
Physician Assistants
Similar to the patient navigators, the role of physician assistants merit attention
to diffuse some of the responsibilities of the medical care professionals.[33] Physician assistants work closely and physicians supervise it. They are responsible
for holding numerous duties in various disciplines in the healthcare system. The physician
assistants hold limited license to practice and can examine patients, order diagnostic
tests to carry out, interpret test results, provide medical information, and prescribe
medications.[33] Given the nature of their role, physician assistants have immense scope to provide
cost-effective and pragmatic solutions to our fragile healthcare system.
There is also a need to scale up patient navigation and physician assistant programs
nationwide to tackle short-staffed medical care professionals and improve care and
delivery of health. Specifically, to create a sustainable, long-term accessibility
to cancer care in the state of Nagaland, there is an imperative need to set up a medical
college to put the basic health systems in place, without which the operation will
not be successful.
Furthermore, the implementation of e-health in disseminating health awareness can
be an added advantage. Given the psychological distress involved in cancer diagnosis,
it is pertinent that social workers, counselors, and health psychologists provide
services in the cancer care continuum. This would enhance the triadic communication
(patient, primary caregivers, and physician(s)) for effective adherence to treatment
regimen and agency over medical decision-making. Additionally, given the unique multicultural
setting of the country, a culturally and socially appropriate approach should be incorporated
into the programs to focus on inclusivity and equitable access to cancer care.
