Main Article Content
Chronic myeloid leukemia;, Cost of treatment, India
Introduction: Outcomes in chronic myeloid leukemia (CML) have vastly improved after the introduction of tyrosine kinase inhibitors. However, patients in low and middle income countries face many challenges due to social and financial barriers.
Objective: This study was conducted with the aim of understanding socio-economic hindrances and knowledge-attitudes-practices of patients of chronic phase CML who are taking imatinib.
Materials and Methods: Patients of chronic phase CML, aged 15 and above, taking imatinib for 6 months or more were included in the study. A questionnaire (in Hindi language) was administered, enquiring about perceptions of nature of disease and its treatment, how imatinib was obtained, drug-taking behaviour, economic and social burden of the treatment.
Results: Four hundred patients were recruited (median age 37 years, median duration on imatinib 63 months). Patients hailed from 16 different Indian states and 29.75% patients had to travel more than 500 kilometres for their hospital visit. Scheduled visits were missed by 14.75%. One third of the patients were unaware of the lifelong duration of treatment and 41.75% were unaware of the risks of discontinuing treatment. Treatment was financed by three different means- 61.75% received imatinib free of cost via the Glivec International Patient Assistance Program (GIPAP), 14.25% had treatment costs reimbursed by their employer, and 24% bore the cost of treatment themselves. Patients felt financially burdened due to cost of drugs (self-paying patients), cost of investigations, expenditure of the commute and stay for hospital visit, and loss of working days due to hospital visits.
Conclusion: Cost of treatment, lack of widespread availability of hematology services and poor patient awareness are significant barriers to optimum treatment of CML in low and middle income countries.
2. Unnikrishnan R, Veeraiah S, Mani S, Rajendranath R, Rajaraman S, Vidhubala Elangovan GS, et al. Comprehensive Evaluation of Adherence to Therapy, Its Associations, and Its Implications in Patients With Chronic Myeloid Leukemia Receiving Imatinib. Clin Lymphoma Myeloma Leuk. 2016 Jun;16(6):366–371.e3.
3. Breccia M, Efficace F, Sica S, Abruzzese E, Cedrone M, Turri D, et al. Adherence and future discontinuation of tyrosine kinase inhibitors in chronic phase chronic myeloid leukemia. A patient-based survey on 1133 patients. Leukemia Research. 2015 Oct 1;39(10):1055–9.
4. de Almeida MH, Pagnano KBB, Vigorito AC, Lorand-Metze I, de Souza CA. Adherence to tyrosine kinase inhibitor therapy for chronic myeloid leukemia: a Brazilian single-center cohort. Acta Haematol. 2013;130(1):16–22.
5. Hamerschlak N, Souza C de, Cornacchioni AL, Pasquini R, Tabak D, Spector N, et al. Patients’ perceptions about diagnosis and treatment of chronic myeloid leukemia: a cross-sectional study among Brazilian patients. Sao Paulo Med J. 2015 Dec;133(6):471–9.
6. Noens L, van Lierde M-A, De Bock R, Verhoef G, Zachée P, Berneman Z, et al. Prevalence, determinants, and outcomes of nonadherence to imatinib therapy in patients with chronic myeloid leukemia: the ADAGIO study. Blood. 2009 May 28;113(22):5401–11.
7. Ruddy K, Mayer E, Partridge A. Patient adherence and persistence with oral anticancer treatment. CA: A Cancer Journal for Clinicians. 2009 Jan 1;59(1):56–66.
8. Eliasson L, Clifford S, Barber N, Marin D. Exploring chronic myeloid leukemia patients’ reasons for not adhering to the oral anticancer drug imatinib as prescribed. Leuk Res. 2011 May;35(5):626–30.
9. Kapoor J, Agrawal N, Ahmed R, Sharma SK, Gupta A, Bhurani D. Factors influencing adherence to imatinib in Indian chronic myeloid leukemia patients: a cross-sectional study. Mediterr J Hematol Infect Dis. 2015;7(1):e2015013.
10. Efficace F, Baccarani M, Rosti G, Cottone F, Castagnetti F, Breccia M, et al. Investigating factors associated with adherence behaviour in patients with chronic myeloid leukemia: an observational patient-centered outcome study. Br J Cancer. 2012 Sep 4;107(6):904–9.
11. Garcia-Gonzalez P, Boultbee P, Epstein D. Novel Humanitarian Aid Program: The Glivec International Patient Assistance Program—Lessons Learned From Providing Access to Breakthrough Targeted Oncology Treatment in Low- and Middle-Income Countries. J Glob Oncol. 2015 Sep 23;1(1):37–45.
12. Jiang Q, Yu L, Gale RP. Patients’ and hematologists’ concerns regarding tyrosine kinase-inhibitor therapy in chronic myeloid leukemia. J Cancer Res Clin Oncol. 2018 Apr;144(4):735–41.
13. Mospi.gov.in. (2020). Press note on provisional estimates of annual national income, 2018-19 and quarterly estimates of gross domestic product for the fourth quarter (q4) of 2018-19. [online] Available at: http://www.mospi.gov.in/sites/default/files/press_release/Press%20Note%20PE%202018-19-31.5.2019-Final.pdf
14. Malhotra H, Radich J, Garcia-Gonzalez P. Meeting the needs of CML patients in resource-poor countries. Hematology Am Soc Hematol Educ Program. 2019 Dec 6;2019(1):433–42.
15. Goldberg SL. Monitoring Chronic Myeloid Leukemia in the Real World: Gaps and Opportunities. Clinical Lymphoma Myeloma and Leukemia. 2015 Dec 1;15(12):711–4.
16. Geelen IGP, Thielen N, Janssen JJWM, Hoogendoorn M, Roosma TJA, Willemsen SP, et al. Treatment outcome in a population-based, ‘real-world’ cohort of patients with chronic myeloid leukemia. Haematologica. 2017 Nov;102(11):1842–9.