البحث في الجوانب الاقتصادية لمرض ثلاسيميا- بيتا في الأردن لعام 2019
DOI:
https://doi.org/10.35516/jjps.v15i3.412الكلمات المفتاحية:
ثلاسيميا، الأردن، العبء الاقتصادي، 2019الملخص
يعد مرض الثلاسيميا من أمراض الدم الوراثية والاختلالات الجينية الأكثر شيوعا في العالم، ويزداد انشارها في منطقة حوض البحر الأبيض المتوسط. تقدر منظمة الصحة العالمية عدد سكان العالم الذين يعانون من الثلاسيميا (بيتا) ب 2.9%. بينما يقدر معدل انتشار الثلاسيميا في الأردن ب( 2-4)%. يحتاج مرضى الثلاسيميا إلى عناية خاصة مدى الحياة حيث يعانون من نوعية حياة سيئة، وأعباء مادية واجتماعية مرهقة على المرضى وذويهم. وتعتبر وزارة الصحة الأردنية الجهة الوحيدة المسؤولة عن علاج هؤلاء المرضى، حيث تتكفل بالإجراءات العلاجية والوقائية بدءا من فحوصات ما قبل الزواج، وحتى تغطية الأدوية المستخدمة بغض النظر عن جنسية المرضى. هدفت هذه الدراسة لتقدير العبء الاقتصادي لمرض الثلاسيميا لعام 2019 في الأردن. وتضم (680) مريضا تم إدخالهم لمراكز علاج مرض الثلاسيميا وراجعوا العيادات الخارجية في الفترة ما بين الأول من يوليو وحتى 31 أغسطس عام 2019. تم جمع البيانات باستخدام استبيان مجهز مسبقا وقام الباحثون بتعبئته من ملفات المرضى الطبية المحوسبة، ثم تقدير العبء الاقتصادي لهذا المرض من منظور وزارة الصحة والمنظور المجتمعي. قدرت الكلفة السنوية المتوسطة لمريض الثلاسيميا الأردني المؤمن ب 2674 د.أ بينما تصل كلفة المريض غير المؤمن إلى 4627 د.أ. وتقدر كلفة تغطية مريض الثلاسيميا غير الأردني المؤمن 4751 د.أ بينما لغير المؤمن من نفس الفئة 6651 د.أ. أما الكلفة الإجمالية فتقدر بحوالي 2,148,741 د.أ. تم صرف 1,393,329 د.أ على المرضى الأردنيين بينما تم صرف 755,412 د.أ على المرضى غير الأردنيين في السنة. وفي النهاية فإن العبء الاقتصادي المرتفع لمرض الثلاسيميا في الأردن يحتاج إلى تبني سياسات للسيطرة على المرض مثل تشجيع الاستشارة قبل الزواج، والتعليم والتوعية حول هذا المرض.
المراجع
Malviya, R., Srivastava, P., Kumar, U., Bhargava ,C.S and Hashemite Kingdom of jordan Statistics. Jordan Statistical Yearbook. 2019. Department of Statistics website
High Health Council-Jordan. Jordan National Health Accounts technical report for 2016 – 2017 Fiscal Years (published in 2019). Jordanian High Health Council website accessed in Dec 2021
Alawi,Rand and Alabbadi ,Ibrahim. Investigating the Effect of Data Exclusivity on the Pharmaceutical Sector in Jordan. Jordan Journal of Pharmaceutical Sciences.2015; 8(2):70-81.
Ministry of Health Annual Report (2019). Ministry of Health website accessed in Dec 2021
Copley-Merriman, K. Rare Diseases: Addressing the Challenges in Diagnosis, Drug Approval, and Patient Access. Value in Health. 2018;21(5):491-2.
Richter T, Nestler-Parr S, Babela R, Khan ZM, Tesoro T, Molsen E, et al. Rare Disease Terminology and Definitions-A Systematic Global Review: Report of the ISPOR Rare Disease Special Interest Group. Value in Health. 2015;18(6):906-14.
Auvin, S, Irwin, J, Abi-Aad, P, Battersby, A. The Problem of Rarity: Estimation of Prevalence in Rare Disease. Value Health. 2018;21(5):501-7.
Memish, ZA, Saeedi, MY. Six-year outcome of the national premarital screening and genetic counseling program for sickle cell disease and beta-thalassemia in Saudi Arabia. Annals of Saudi Medicine. 2011;31(3):229-35.
Ajlouni, K, Khader, YS, Batieha, A, Ajlouni, H, El-Khateeb, M. An increase in prevalence of diabetes mellitus in Jordan over 10 years. Journal of Diabetes and Its Complications. 2008;22(5):317-24.
The Ethics of Prevention: Counseling, Consanguinity, and Premarital Testing for Beta-Thalassemia in Jordan: Princeton University; 2011.
Al-Allawi ,NAS, Jalal, SD, Ahmed, NH, Faraj, AH, Shalli, A, Hamamy, H. The first five years of a preventive programme for haemoglobinopathies in Northeastern Iraq. Journal of Medical Screening. 2013;20(4):171-6.
Saffi, M, Howard, N. Exploring the Effectiveness of Mandatory Premarital Screening and Genetic Counselling Programmes for beta-Thalassaemia in the Middle East: A Scoping Review. Public Health Genomics. 2015;18(4):193-203.
Ambuja Kantharaj, SC. Coping with the burden of thalassemia: Aiming for a thalassemia free world. Glob J Transfus Med 2018;3 (1):1-5.
F. H. Thalassaemia in the Middle East. Lancet. 2012:379.
P. Lahiry SAA-A, R.A. Hegele. Understanding Beta-Thalassemia with Focus on the Indian Subcontinent and the Middle East The Open Hematology Journal. 2008; 2:5-13.
Belhoul, KM, Abdulrahman, M, Alraei RF. Hemoglobinopathy Carrier Prevalence in the United Arab Emirates: First Analysis of The Dubai Health Authority Premarital Screening Program Results. Hemoglobin. 2013;37(4):359-68.
Mohammadreza Sattari, DS, Alireza Nikanfar , Abasali Hosseyn Pourfeizi , Maryam Nazari, Roya Dolatkhah SM. The Financial and Social Impact of Thalassemia and Its Treatment in Iran. Pharmaceutical sciences. 2012;18(3):171-6.
Al-Gazali, L, Hamamy, H, Al-Arrayad, S. Genetic dilsorders in the Arab world. Bmj-British Medical Journal. 2006;333(7573):831-4B.
Kohne, E. Hemoglobinopathies Clinical Manifestations, Diagnosis, and Treatment. Deutsches Arzteblatt International. 2011;108(31-32):532-U21.
Nicole, E., Cousens, CLG, Sylvia, A, Metcalfe, Martin B Delatycki. Carrier screening for beta-thalassaemia: a review of international practice. Eur J Hum Genet 2010 18((10)):1077-83.
Weatherall DJC, J. B. Inherited haemoglobin disorders: an increasing global health problem. 2001.
Darshana, T, Rees, D, Premawardhena, A., Hydroxyurea and blood transfusion therapy for Sickle cell disease in South Asia: inconsistent treatment of a neglected disease. Orphanet Journal of Rare Diseases. 2021;16(1).
Shteyer, E NI, Godfarb, A, Hemed, N, Revel-Vilk S. Activity of cytochrome P450 1A2 in relation to hepatic iron accumulation in transfusion-dependent β-thalassaemia major patients. . Vox Sang. 2015 108((3)):268-73.
Meloni, A, Detterich, J, Pepe, A, Harmatz, P, Coates, TD, Wood, JC. Pulmonary hypertension in well-transfused thalassemia major patients. Blood Cells Molecules and Diseases. 2015;54(2):189-94.
Matin, S, Jahromi, MG, Karemizadeh, Z, Haghpanah, S, De Sanctis, V, Soliman, A, et al. The Frequency of Adrenal Insufficiency in Adolescents and Young Adults with Thalassemia Major versus Thalassemia Intermedia in Iran. Mediterranean Journal of Hematology and Infectious Diseases. 2015;7.
Mohammad Hossein Gozashti, AH, Mahdieh Mashrouteh. Prevalence of metabolic syndrome in patients with minor beta thalassemia and its related factors: a cross-sectional study. J Diabetes Metab Disord 31;13(1):108. doi: 101186/s40200-014-0108-z. 2014;13((1)):108.
Annita Kolnagou CNK, George J Kontoghiorghes. Transition of Thalassaemia and Friedreich ataxia from fatal to chronic diseases. World J Methodol 2014; 26;4((4)):197-218.
Shakoor, A, Zahoor, M, Sadaf, A, Alvi, N, Fadoo, Z, Rizvi ,A, et al. Effect of L-type calcium channel blocker (amlodipine) on myocardial iron deposition in patients with thalassaemia with moderate-to-severe myocardial iron deposition: protocol for a randomised, controlled trial. Bmj Open. 2014;4(12).
Chu, NL, Wu ,ZK, Zhang,XH, Fang,SP, Wang, WJ, Cheng, YL. Molecular Mechanism of Yisui Shengxue Granule, a Complex Chinese Medicine, on Thalassemia Patients Suffering from Hemolysis and Anemia of Erythrocytes. Evidence-Based Complementary and Alternative Medicine. 2014;2014.
Singh, SP, Gupta, SC. Effectiveness of red cell osmotic fragility test with varying degrees of saline concentration in detecting beta-thalassaemia trait. Singapore Medical Journal. 2008;49(10):823-6.
Esmaeilzadeh, F, Azarkeivan, A, Emamgholipour, S, Sari, AA, Yaseri, M, Ahmadi, B, et al. Economic Burden of Thalassemia Major in Iran, 2015. Journal of Research in Health Sciences. 2016;16(3):111-U10.
Elalfy, MS, Adly, AM, Wali, Y, Tony, S, Samir, A, Elhenawy, YI. Efficacy and safety of a novel combination of two oral chelators deferasirox/deferiprone over deferoxamine/deferiprone in severely iron overloaded young beta thalassemia major patients. European Journal of Haematology. 2015;95(5):411-20.
Deborah Rund, ER. Beta-thalassemia. N Engl J Med. 2005;353((11)):1135-46.
Karnon, J, Zeuner, D, Brown, J, Ades, AE, Wonke, B, Modell ,B. Lifetime treatment costs of beta-thalassaemia major. Clinical and Laboratory Haematology. 1999;21(6):377-85.
Arthorn Riewpaiboon IN, Kitti, Torcharus, Kaemthong, Indaratna, Montarat Thavorncharoensap, Bang-on Ubol. Economic burden of beta-thalassemia/Hb E and beta-thalassemia major in Thai children. BMC Research Notes. 2010;3((29)):1-7.
Ho WL, Lin KH, Wang JD, Hwang JS, Chung CW, Lin DT, et al. Financial burden of national health insurance for treating patients with transfusion-dependent thalassemia in Taiwan. Bone Marrow Transplantation. 2006;37(6):569-74.
H. Hamamy LJ, J Al-Darawsheh, K Ajlouni. Consanguineous marriages in Jordan: why is the rate changing with time? Clinical Genetics. 2005;67((6)):451-534.
Hamamy, H. ,· Al-Hait, S., · Alwan, A., · Ajlouni, K. Jordan: Communities and Community Genetics. Community Genetics. 2007;10((1)):45-51.
S. A. Khoury DM. Consanguineous marriage in Jordan. American Journal of Medical Genetics. 1992;43((5)):769-75.
M. Mazharul Islam FMA, Md Hasinur Rahaman Khan. Consanguineous Marriage in Jordan: an Update. J Biosoc Sci. 2018;50((4)):573-8.
Elias, I., Sunna, NSG., Dona, D., Knapp, Nabil A. Bashir. Prevalence of Hemoglobin S and β-Thalassemia in Northern Jordan. The Journal of Obstetrics and Gynaecology Research. 1996;22((1)):17-20.
Ivo Abraham, DS. The cost of blood transfusion in Western Europe as estimated from six studies. Transfusion. 2012;52((9)):1983-8.
Weiss, M., Jun, M.P., Sheth, S. Clinical and economic burden of regularly transfused adult patients with beta-thalassemia in the United States: A retrospective cohort study using payer claims. American Journal of Hematology. 2019;94(5):E129-E32.
Thomas, E., Delea, M.H., Simu, K. Thomas,Jean-Francois Baladi, Pradyumna D. Phatak, Thomas D. Coates. Outcomes, utilization, and costs among thalassemia and sickle cell disease patients receiving deferoxamine therapy in the United States. American Journal of Hematology. 2008;83((4)):263-70.
World Bank. Domestic Product per capita (current US$). 2016. World Bank website
Alabbadi, Ibrahim. Cost Impact of Purchasing Pharmaceuticals Jointly In the Public Health Sector In Jordan. Jordan Journal of Pharmaceutical Sciences. 2011; 4(2): 97-104
Shepard, DS H-RY, Al-Halaseh, I, Fardous, T, Jrasat, M, Abu-Shaer M. Health Care Cost Study at Ministry of Health and the Cost and Financial Impact of Expanding the Civil Insurance Program to Vulnerable Jordanians and Syrian Refugees.; 2017.
Deborah Rund, ER. Beta-thalassemia. N Engl J Med. 2005;353((11)):1135-46.
Shah, N MA, Chauhan, D, Vora, C, Shah, NR. Study on effectiveness of transfusion program in thalassemia major patients receiving multiple blood transfusions at a transfusion centre in Western India. Asian J Transfus Sci. 2010;4((2)):94-8.
Moirangthem, A, Phadke, SR. Socio-demographic Profile and Economic Burden of Treatment of Transfusion Dependent Thalassemia. Indian Journal of Pediatrics. 2018;85(2):102-7.
Ali Antmen EA, Stefano Losi MA, Nigel Burrows MA, Chris Bartiromo, Henry Hu. Direct Medical Care Cost Associated with β-Thalassemia Care in Turkey. Blood. 2017;130(Supplement 1):2094.
Emanuele Angelucci , Ali Antmen, Stefano Losi, Nigel Burrows, Chris Bartiromo , Hu XH. Direct Medical Care Costs Associated with β-Thalassemia Care in Italy. Blood 2017;130(Supplement 1):3368.
Halasa-Rappel Y, Fardous T, Jrasat M, Al-Halaseh I, Abu-Shaer M, Hijazeen R, et al. Actuarial cost and fiscal impact of expanding the Jordan Civil Insurance Programme for health coverage to vulnerable citizens. East Mediterr Health J. 2020;26(2):206-11.
Angastiniotis, M. MB. Global epidemiology of hemoglobin disorders. . Ann N Y Acad Sci. 1998;30(850):251-69.
