Paucity of cancer care in India & how tele-genetics can address the cancer epidemic
Cancer is transforming into an epidemic in India. The mortality rates have doubled from 1990 to 2016 1 , posing a major threat to public health. Over one million new cancer cases are diagnosed every year, and the number is expected to rise 5-fold by 2025 2 . In fact, today, India ranks third in the world with regard to incidence of cancers.
Several factors such as shortage of infrastructure facilities, financial constraints, lack of adequate resources, faulty planning and a limited number of oncologists have affected the quality of treatment provided to cancer patients in the country . Official data from the ministry of health reports that the ratio of oncologists to cancer patients stands at 1:2,000 in India as compared to 1:100 in the United States. In addition, lack of awareness about the disease has also played a significant role with approximately 75-80% of patients being diagnosed with cancer only at a fairly advanced stage. All these factors impose an enormous burden on India’s healthcare system. This is further compounded by the realization that this country can afford to spend only 1.2% of its total GDP towards healthcare 3.
The spectrum of managing cancer in India is very different than in the West largely due to the lack of a well developed and unified health care system. With only around 62 dedicated cancer care centers to serve a huge population of 1.37 billion, it is not surprising that as many as 83% of cancer patients do not get adequate treatment and medical care. In addition, the out-of-pocket expenditure is three times higher for private inpatient cancer care thereby forcing nearly six crore Indians below the poverty line each year 4
While on one hand, the country is battling with issues like poor accessibility and affordability constraints, the quality of patient care also remains a major challenge. Many oncologists are unable to diagnose cancer early on, struggling to keep pace with the large volume of patient influx, medical records, and advancements in current research and clinical trials as well. Furthermore, due to their busy patient schedules, oncologists find it a challenge to allocate time and resources to stay up to date on the best practices in treatment and care management. Against this backdrop of growing needs, an important strategy is to progress towards more individualized and family-centered care, strengthened by a greater understanding of the utility and application of genetic and genomics for timely prevention and improved clinical outcomes.
Genetic counselling – Using genomic information to help reduce the growing cancer burden
As the field of hereditary cancer predisposition and cancer management continues to evolve, hundreds of genetic testing options are being made available in the healthcare market. In this generation of precision medicine, genetic counselling can be vital to ensure that the Doctors and their patients are kept abreast of the latest developments and treatment options.
In contrast with the ever growing panel of genetic tests, oncologists are being increasingly challenged with the dilemma of whether a reported variant is an isolated somatic change or if it indeed represents a germline mutation and therefore heritable. In this context, the genetic counsellors are becoming an integral member of the oncology team, providing expertise in diagnosing hereditary cancer syndromes, in addressing the unique challenges associated with genetic evaluation, and in helping families utilize genomic information about cancer risk to plan screening and prevention strategies with the help of their Doctors. The counsellors are well trained in relieving anxiety and fear and to empower patients and their families by providing fact-based risk information and potential options for proactive risk reduction and/or early detection strategies whenever a pathogenic disease associated gene mutation is identified.
Most importantly, genetic counsellors are able to practice independently, away from the physician’s presence since a physical exam is not always necessary. As the primary concern in familial cancer is usually isolated to tumors/cancer, the genetic counsellor is able to perform an efficient and focused analysis of the medical and family history via telephone or video consultation. Furthermore, those individuals who undertake genetic testing to know their cancer susceptibility are largely unaffected and therefore may not otherwise be associated with any specialized tertiary medical centre with access to genetic services. Such individuals in particular, may benefit from a consolidated offering of genetic counselling and testing services.
Interpreting test results using the tele-genetics platform
As the cost of genetic sequencing continues to decline, cancer management may benefit from efforts to integrate genetic information in risk stratification, prevention, and treatment, thereby reducing the healthcare cost & resource burden. Besides, due to the increasing number of patients seeking interpretation of their genetic test results, cancer genetic counselling is meant to increase a family’s understanding of testing options, ensure that the most appropriate test is ordered, allow for informed decision making, and ensure that the families are prepared for the genetic test outcomes.
However, genetic testing without genetic counselling has been linked to a variety of negative testing outcomes including lack of informed decision making around testing, ordering of costly and unnecessary genetic tests, misinterpretation of genetic test results, inappropriate or inadequate medical management, violations of ethical standards, and adverse psychosocial outcomes 5, 6, 7 highlighting the pivotal role of expert genetic counselling in cancer care. While time-sensitive traditional genetic counselling is comprehensive in nature, cancer genetic counsellors who follow this method do see fewer patients and have a longer waiting time as compared to those who employ innovative methods 8.
At truGeny, an innovative telegenetics services platform, our certified genetic counsellors help to translate genomic information into clinically meaningful interpretations that can be easily adapted and integrated into routine clinical practice, without compromising on the psychological and ethical issues, while avoiding legal pitfalls. To ensure access to quality genetic and genomic services, truGeny offers genetic counselling services via their proprietary telegenetics online portal with a vision to improve patient access to state-of-the-art health care and management in areas with geographical barriers, while reducing costs, saving time and providing their unique services at one’s own pace, choice of place and convenience.
- Dhillon, P. K., Mathur, P., Nandakumar, A., Fitzmaurice, C., Kumar, G. A., Mehrotra, R., … & Thakur, J. S. (2018). The burden of cancers and their variations across the states of India: the Global Burden of Disease Study 1990–2016. The Lancet Oncology, 19(10), 1289-1306.
- Mallath, M. K., Taylor, D. G., Badwe, R. A., Rath, G. K., Shanta, V., Pramesh, C. S., … & Kapoor, S. (2014). The growing burden of cancer in India: epidemiology and social context. The Lancet Oncology, 15(6), e205-e212.
- Bhardwaj, Geeta; Monga, Anuradha; Shende, Ketan; Kasat, Sachin; Rawat, Sachin (1 April 2014). "Healthcare At the Bottom of the Pyramid An Assessment of Mass Health Insurance Schemes in India". Journal of the Insurance Institute of India. 1 (4): 10–22.
- Rajpal, S., Kumar, A., & Joe, W. (2018). Economic burden of cancer in India: Evidence from cross-sectional nationally representative household survey, 2014. PloS one, 13(2), e0193320.
- Bensend, T. A., Veach, P. M., & Niendorf, K. B. (2014). What’s the harm? Genetic counselor perceptions of adverse effects of genetics service provision by non-genetics professionals. Journal of genetic counseling, 23(1), 48-63.
- Brierley, K. L., Blouch, E., Cogswell, W., Homer, J. P., Pencarinha, D., Stanislaw, C. L., & Matloff, E. T. (2012). Adverse events in cancer genetic testing: medical, ethical, legal, and financial implications. The Cancer Journal, 18(4), 303-309.
- Miller, C. E., Krautscheid, P., Baldwin, E. E., Tvrdik, T., Openshaw, A. S., Hart, K., & LaGrave, D. (2014). Genetic counselor review of genetic test orders in a reference laboratory reduces unnecessary testing. American Journal of Medical Genetics Part A, 164(5), 1094-1101.
- Trepanier, A. M., & Allain, D. C. (2014). Models of service delivery for cancer genetic risk assessment and counseling. Journal of Genetic Counseling, 23(2), 239-253.