Co-Written by Akhter Hussain Bhat & Noorain Batool Khan
The novel coronavirus disease (COVID-19) has become a worldwide threat and a major healthcare concern. Since its outbreak in China, the virus has so far affected more than 5.72 million people with over 3.56 lakh deaths globally causing widespread concern, fear, anxiety and stress. Owing to the severe infectious nature of the virus, the World Health Organization (WHO) in March 2020, declared the outbreak as a pandemic and a public health emergency of international concern. As the medical fraternity around the world is yet to find a proper cure for the infection, the primary interventions that the countries worldwide have adopted are significant public health measures, less social exposure, social distancing and national lockdowns. The virus that emerged only months ago has forced sudden and dramatic changes throughout the medical world. Health care and other associated social care including community medicine have been redirected to manage COVID-19 outbreak. Consequently, many clinical including oncology services have been relegated to second priority. Annual checkups, routine surgeries and even normal services have been cut back or canceled to minimize exposure to the virus. This in turn has posed major challenges for people suffering from various morbidities. The challenges are even greater for people who are grappling from cancer and are more susceptible than others. According to a study from China, cancer seems to have comparable associations with an increased risk of death from the virus to those of other comorbidities, such as chronic respiratory disease, tuberculosis, and hypertension (Liang et al, 2020). This article is an attempt to highlight the challenges faced by the cancer patients in seeking health care amidst the pandemic of COVID 19. But before that as a prelude, a brief talk about the health seeking behavior, as the utilization of health care or in other words seeking health care is broadly situated within the concept of health seeking behavior.
Health seeking behavior (HSB) has been defined as any action undertaken by individuals who perceive themselves to have a health problem for the purpose of an appropriate remedy (Oberoi et al, 2016; Latunji et al, 2018). Health seeking behavior is situated within the broader concept of health behavior which encompasses activities undertaken to maintain good health, prevent illness, as well as dealing with any departure from a good state of health (MacKian, 2003). Health care seeking behavior is categorized as formal (help sought from health professionals), informal relational (friends or family), and informal personal (self-help). According to Musoke et al (2014), the health seeking behavior of a community determines how health services are used and in turn the health outcomes of populations. Health seeking behavior is influenced by different factors or in other word there are various determinants in the form of physical, socio-cultural, political, environmental, socio-demographic, gender, knowledge about the facilities and even the health care system itself. It is regulated by the individual himself and family habits, norms that exist in a society, expectations and characteristics and availability of health services (Musoke et al, 2014). Among the factors mentioned, the availability of health services or facilities, access to these services, quality of services, utilization of the health care system are considered the major determinants of the HSB and accordingly the quality of the health standards of the people.
As the pandemic of COVID 19 has disrupted the whole social life, health care services to patients suffering from cancer are no exception. The foremost challenge facing cancer patients is the inability to receive necessary medical services both in terms of getting to hospital and receiving normal medical care once there. Lack of adequate health care infrastructure and human resources, serious supply-chain disruptions, and widespread fear among patients and health care workers have resulted in patient care and safety being compromised. Several cancer centers drastically scaled back their services after preliminary reports from China showed that Covid-19 outcomes are significantly worse among patients with cancer.
Due to the measures adopted by world governments’ to prevent the spread of the infection, cancer patients face major encounters. They cannot travel from one place to another and get the timely treatment. This has resulted in many untoward incidents to occur like the recent one in Kolkata, West Bengal where a two year old girl died because of the reason for not getting the timely treatment. The child had undergone tumor surgery in her stomach in last December at the state run Calcutta Medical College. Amidst the lockdown, her condition deteriorated and the family took her to at least four hospitals but to no avail. “Everywhere we went, we were turned away,” the father of the toddler is reported to have said who is a cycle van driver. Unable to get treatment the child lost her battle against the deadly disease. ‘Had the outbreak not occurred our daughter would have been alive today’¸ the parents are reported to have said (India Today). The death of the child will not figure in the list of COVID-19 casualties as she was not suffering from any covid related infection. Instead, the non-availability and also inaccess to the health care services lead to the otherwise avoidable incident to occur.
The joblessness of the daily paid workers caused due to complete lockdown is adding to the further challenges to seek timely health care for the cancer patients. Here the case of a toddler suffering from blood cancer can be cited as a reference which we have taken from the ketto.org website which is an online crowdfunding platform that supports the treatment of various poor and needy patients. The child named Kritika is reported to be suffering from blood cancer since December, 2019 for which initially doctors have advised high doses of chemotherapy with no positive results instead it caused further health related complications. According to the doctors the only thing that can make her get rid of cancer is a bone marrow transplant. However, her father (Rajkumar) cannot afford the treatment that costs a whopping amount of Rs 2100000. Rajkumar earns his livelihood working as a taxi driver but due to continued lockdown he is unable to earn though he has borrowed some money from everyone he knows which further aggravates his situation. “Cancer will take away my daughter if I don’t get the required amount. I have absolutely no income. I don’t even know how I will provide for my family in the coming days. Everything is so uncertain and I am helpless. I can’t do anything”, the father is reported to have said. The poor parents are trying hard to save their child, but now they have no option than to helplessly watch her suffer. The case referred to here, exemplifies the challenges faced by cancer patients in accessing the health care due to the negative impacts caused by the pandemic on the socio-economic conditions of the people.
Many patients with cancer are struggling to receive treatment due to hospitals canceling or delaying surgeries and other procedures. The non-availability of timely services and their utilization has negatively impacted upon the mental health of the people suffering from cancer. For cancer patients, stress is more disturbing than the cancer itself says Dr Shankar-a Delhi based oncologist. He further says that in this situation, it is very difficult to manage these people as they are unable to come to the hospital. The cancer specialist remarked that it is a dilemma for healthcare professionals as well as patients because there is an issue regarding what to follow and what not to. Even educating patients with cancer about the various aspects of COVID‑19 infection is more difficult because patients have their own illnesses and symptoms to worry about, say a group of leading oncologists at Tata Memorial Center- the oldest and the largest comprehensive cancer center in India. Further for a cancer patient, nothing, not even the danger of contracting COVID-19, is more worrisome than that of compromising their cancer care, say the experts at the center. There is also concern that patients who are otherwise healthy and have curable cancers have unfortunately concluded that the risk of contracting COVID-19 may outweigh the benefits of cancer treatment (Cannistra et al, 2020; Uzzo et al, 2020). Due to the current crisis of the pandemic with people fearing hospital visits aided by delayed diagnosis can lead to stage migration say from stage 1 and 2 to stage 3 and 4 which can become incurable sometimes, says Dr Bhawna Sirohi, director of medical oncology at Max healthcare.
There is no denying the fact that the coronavirus pandemic is potentially the greatest public health crisis. This crisis has brought unprecedented challenges before world governments. But a crisis is no excuse to focus all of one’s efforts on one disease at the expense of others. Though there are some reports of cancer cases been treated at some hospitals like the one in the live mint e-paper (May 17, 2020) of the 20 cancer-cum-corona patients who were successfully cured of the infection at city based Rajiv Gandhi Hospital in Chennai but, at the larger level the situation is not that much better. Considering the serious medical and emotional needs of patients, the governments need to issue scientifically drafted patient centric guidelines about managing cancer patients and handling their care against the backdrop of the COVID-19 outbreak. Healthcare providers on their part must remain committed to providing cancer patients the information about appropriate medical care, practice modifications and treatment programs. The COVID-19 pandemic needs to be managed, but not at the expense of lives and sufferings of cancer patients. Cancer, like coronavirus does not respect national borders, neither should we.
Akhter Hussain Bhat (first author) is Ph.D. research scholar at department of Sociology, Aligarh Muslim University, Aligarh, India. Email: firstname.lastname@example.org
Noorain Batool Khan (coauthor) is Ph.D. research scholar at department of Sociology, Aligarh Muslim University, Aligarh, India. Email: email@example.com.