Low number of transgender persons with cancer: A survey assessment of the Indian scenario

In all South Asian countries, patriarchal values and social norms keep gender inequalities alive across all social structures.[1] In South Asia, members of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community are marginalized. Among the LGBTQ group, the most socially and economically deprived community is the third gender or transgender. Their rights and legal characterization as the third gender are often neglected. Transgender rights were recently legalized in a few countries like India and Sri Lanka; however, in countries like Pakistan and Bangladesh, transgender is not a legal entity. Nonetheless, being transgender is a social taboo in this part of the world. Globally, the average number of transgender people varies between 0.1% and 0.6%.[2,3] In India, as per the last census in 2011, the number of transgender persons was 487,803, which comprised around 0.04% of the total population (total population in 2011 = 1,210,854,977).[4,5] This is most probably an underestimation. Approximately 0.4% of the population of the United States of America identifies as transgender.[3] Sources estimate that the number of transwomen is around one million in India.[6,7] This figure of one million is compatible with the world transgender population density (with a conservative estimate at the lower range of approximately 0.1%).[3] Social stigma against transgender persons has existed in Indian society since prehistoric times.[8] Often, transgenders are deprived of standard schooling and education, mainstream professions, and respect. Although the exact figure is unknown, a large proportion (as high as 90%) of transgender people were forced to choose roadside begging and take up sex work to survive. Furthermore, transgenders are often separated from their families due to social stigma. Transgender women, known as “Hijras,” generally reside in a community on the outskirts or ghettos of Indian cities and towns. There is no clinical reason why there should be fewer cases of cancer among transgender persons; rather, they are more prone to cancer because of unhealthy living conditions, unprotected sex, lack of access to medical care, improper nutrition, and all the other attributes related to their low socio-economic status. Nevertheless, it is rare or practically impossible to find even a single transgender person with cancer in the outpatient departments of both public and private hospitals. This discussion is limited to physiological transgenders only, with partially developed male and/or female genitalia and secondary sex characteristics and does not include psychological transgenders or transsexuals who require or use medical assistance to transform from one sex to another. Our study was an attempt to understand the reason behind the lack of physiological transgender persons diagnosed with cancer in India. Given the dearth of literature or published data on this subject, we conducted a brief survey among a group of senior oncologists and transwomen to learn more about their experiences with this group of patients with cancer. Additionally, we attempted to minimize the possibility of observational errors or biases regarding the low number of cancer cases in transgender people. The study was approved by the ethics committee of Manipal Hospitals, Dwarka, New Delhi; all participants provided informed consent. We adhered to the ethical guidelines as outlined in the Declaration of Helsinki while conducting the study. There was no funding for the survey, and the study was not registered in a publicly accessible clinical trials database. The survey was conducted in Medical College Hospitals, S.S.K.M. PG Hospitals, and Apollo Hospitals (Kolkata), Tata Memorial Hospital, and P.D. Hinduja Hospital (Mumbai), All India Institute of Medical Sciences (Delhi), Apollo Hospitals, and Manipal Hospitals (Delhi), and Kalinga Institute of Medical Sciences (Bhubaneshwar). We personally conducted all the interviews; the interview questionnaire was administered to all the participants by the study team. Interviews took between 5 and 10 minutes. A total of 28 senior oncologists (from all three specialties, including surgical [n = 6], medical [n = 10], and radiation [n = 12] oncology) were approached and all agreed to be interviewed. The study team visited the transgender community den and conducted interviews there. First, we located a sizable group of transgenders in New Delhi, close to the Nizamuddin railway station. Eight of them agreed to participate in the study, and we spoke to each one of them separately. Nine additional transgenders were questioned in Kolkata: Beliaghata ghettos, one group close to the study team’s hospital, and one group close to Howrah station. We approached 31 transwomen; 17 agreed to be interviewed in their den about cancer in transgender people. The interviews were conducted between June 2019 and July 2021. The oncologists and transgender persons were from different metropolitan cities of India, such as Kolkata (oncologists = 13, transwomen = 9), New Delhi (oncologists = 9: transwomen = 8), Mumbai (oncologists = 5, transwomen = 0), and Bhubaneswar (oncologists = 1, transwomen = 0). The collective years of service for all the oncologists after their post-graduation were 646 years, with a mean service life of 23.1 years (standard deviation [SD], 4.1; range, 17.5–31). Cumulative and mean public/trust hospital service were 343.5 years and 12.3 years (SD, 9.3; range, 0–27), respectively. Cumulative and mean private hospital service were 302.5 years and 10.8 years (SD, 8.1; range, 0–24), respectively. With an estimated average of 15 and 7 new patients per week in public and private hospitals and a common 45 weeks of working (in both public and private hospitals), the estimated total number of patients evaluated by all oncologists (over the total working period of 343.5 years) was 531,338. Oncologists were asked three questions: (1) Years of service in public and private hospitals post receiving the Doctor of Medicine (MD) degree; (2) Number of transgender patients treated during this period; (3) Transgender patients’ sites of cancer or histopathology (if known). The total number of transgender patients reported by all doctors was 37 (0.007%), with a lifetime average of 1.3 ± 1.1 per oncologist. There were 12 (32.2%) cases of head-and-neck cancers, with four caused by the human papillomavirus. The rest of the 25 (67.6%) patients’ diagnoses included five (13.5%) lung, five (13.5%) gynecological, four (10.8%) breast, three (8.1%) brain, two (5.4%) soft tissue sarcomas, and the remaining six (16.2%) were cancers of unknown sites. Thus, the rate of cancer among transgender persons was found to be 0.007%. Interviewed transwomen were asked three questions: (4) What is your age? (5) Where do you go if you have any disease or illness? (6) Do you know any transgender persons with cancer? The median age of the interviewed transwomen was 42 ± 11.7 years; range, 21.5–64 (interquartile range, 31.3–53). None of the 17 interviewed transwomen could identify a single existing or deceased person with cancer in their community, 53% (9 out of 17) of transgenders were unaware of the term “cancer” or, for that matter, what kind of disease it was. Until recently, transgender persons reported difficulty in getting registered at clinics, as there was no provision to select the third gender on the entry form; thus, they needed to provide the wrong sex information or could not get registered. Today, India has recognized transgender as a third gender, but only in a very limited number of places, e.g., the Kerala and Delhi government health schemes. However, in many places, including both public and private institutions, the system has not been updated to incorporate documentation for the third gender. Another reason that transgenders avoid common clinics is that they are subjected to continuous discrimination, disrespect, and social stigma. Rather, they have an alternative system of medicine that has been passed down through the generations among the community members; they were unwilling to disclose any details regarding this system. Furthermore, quacks are more accessible to them. To enhance their female attributes, most transgender persons take oral and injectable hormones, which are prescribed by their community or by quacks. They are also unable to afford the high costs of treatment at private hospitals. Transgender persons have traditionally been isolated from mainstream Indian society to the point where they have their own God, who is not worshipped by anyone else.[6] The belief that transgender people’s blessings are sacrosanct, and their curses are deadly, is pervasive in Indian society, especially among Hindus, and makes roadside begging their most direct means of livelihood. Additionally, it is close to impossible for transgender persons to find any regular employment and they cannot work as domestic help. As commercial sex workers, unprotected sex yields a 17–41% human immunodeficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) rate among transwomen, which is 100 times higher than the average (0.36%).[6] With a population of 1.38 billion and a 5-year prevalence of 2.7 million cancer cases, the cancer incidence in India is 0.2%.[9] Therefore, the estimated 5-year cancer prevalence among transgender people should be around 2000. However, our survey showed that with a cumulative observation across 646 years and an excess of half a million patients with cancer, only 37 (0.007%) were transgender. Thus, there was a very large gap between the expected and actual number of transgender persons with cancer. While conversing with transgender people, we realized that even those who were familiar with the word “cancer,” had no knowledge or understanding of the disease or its presentation. As a result, it is unclear how they would have even identified persons with cancer, but we could not think of a better method to determine the number of transgender persons with cancer. Our survey comprised several senior oncologists who worked in large public cancer facilities in different metropolitan cities, where transgender persons would be most likely to be found. There is some published literature (largely case series) on the incidence of cancer in the transgender population in the Western world and in South America.[10] However, we could not find any published literature on this topic from India or the subcontinent, other than some work on general health and stigma against the LGBTQ community.[8,11] We restricted our views to physiological transgenders only, as they were the most marginalized among the LGBTQ group.[8] We could not identify any clinical or physiological reasons why transgender people should have a lower incidence of cancer, and therefore the only plausible explanation was that transgender persons with cancer were not being diagnosed because they were unable to reach healthcare facilities due to social discrimination and financial constraints. While financial constraints are certainly a barrier to seeking care in private clinics, there are a large number of public facilities that offer health services free of charge. In general, with the high HIV/AIDS infection rate among transgender persons, we hypothesized that they should be more prone to cancer; however, our survey results did not support this.[12] The literacy rate among transgender people is just 56% compared to the national average of around 73%.[4] Regular education with the goal of promoting mainstream careers and respectable livelihoods has been encouraged by the government, but there is a long way to go before transgender people are wholeheartedly accepted into the patriarchal, value-based Indian society.[13] Ours was a qualitative study and was likely to have been affected by recall bias of the participating oncologists regarding the number of transgender patients that they had treated before. However, recall bias, if any, would have had little effect on the study results. Mathematically, in terms of a fraction, 1 in a million or 2 (100% error) in a million would be about the same, but 10,000 in a million would not be the same as 20,000 (100% error). Similarly, as the number of transgender patients was so low, even if there were a 20% recall bias, the number of transgender patients counted would not have changed the overall representation of the third gender in mainstream cancer treatment. Secondly, because transgender patients with cancer were so rare, their arrival in the clinic would have been difficult to forget. Furthermore, we were unable to find any literature or clinical evidence identifying transgender patients with cancer; therefore, the only option was to rely on the oncologists’ memories. Although fraught with biases and other limitations, this was the only method available to us to generate data on this neglected topic. In conclusion, transgender patients are missing in mainstream cancer treatment, probably due to the social taboo and the lack of acceptance of the third gender in our conservative Indian society.