title: Thalassemia treatment and prevention in Uva Province, Sri Lanka: a public opinion survey.
abstract: Due to its excessive cost thalassemia management is a major health care problem in Sri Lanka. The majority of doctors are using only desferrioxamine (DFO), in grossly inadequate doses mainly because of its unavailability. Deferiprone (L1), which is more affordable, is not used due to fear of toxicity, as previously reported. Arthropathy attributed to L1 has been observed in some patients, and has led to the discontinuation of the drug in all patients, without scientific rationale. The proposed thalassemia prevention project for Uva Province is based on prevention of marriages between carriers. This could be achieved by carrier screening and counseling of teenagers and adolescents well before they select their partners. In Sri Lanka, people find their marriage partners at their work place or universities, by themselves, or with the help of professional marriage brokers (they are called Kapuwa), through relatives and close friends. This process of finding a partner may also be helped by paper advertisements. However, in addition to the appearance and attitude of the prospective partner, the caste, social background and horoscope are major considerations in selecting a partner. Even when they select partners on their own at the work place or university, they keep these factors in the back of their minds to ensure social acceptance. Many relationships are given up due to objections and advice from parents when the caste or social background does not match. A horoscope is a written document that almost every child gets, written by a professional horoscope reader and depending on the time of birth. It is believed, according to the horoscope, that a person's attitudes, desires, future prospects of finding a suitable partner, could be predicted. It is rare to proceed with a marriage if the horoscope does not match. These customs are considered less seriously among educated people when they find their partner at the work place or university. The concept of thalassemia risk-free marriages advocates promotion of marriages where at least one partner is a non-carrier. Success of such a project could be monitored at the time of marriage. This opinion survey indicates that the public is motivated to promote carrier screening and the prevention of thalassemia.
authors.affiliation: General Hospital, Badulla, Sri Lanka. Mudi@sltnet.lk
authors.forename: Rasnayaka M
authors.initials: RM
authors.lastname: Mudiyanse
mesh_terms: D000025:Abortion, Eugenic / Q000331:legislation & jurisprudence; D000293:Adolescent; D000328:Adult; D001803:Blood Transfusion / Q000706:statistics & numerical data; D015913:Chelation Therapy / Q000009:adverse effects / Q000523:psychology; D003131:Combined Modality Therapy; D003625:Data Collection; D000077543:Deferiprone; D003676:Deferoxamine / Q000009:adverse effects / Q000627:therapeutic use; D004363:Drug Utilization / Q000706:statistics & numerical data; D005260:Female; D006580:Genetic Carrier Screening; D005817:Genetic Counseling / Q000706:statistics & numerical data; D005820:Genetic Testing / Q000331:legislation & jurisprudence / Q000523:psychology; D006801:Humans; D007502:Iron Chelating Agents / Q000008:administration & dosage / Q000009:adverse effects / Q000627:therapeutic use*; D019190:Iron Overload / Q000188:drug therapy / Q000209:etiology / Q000517:prevention & control; D007592:Joint Diseases / Q000139:chemically induced; D008297:Male; D008393:Marriage; D009313:National Health Programs; D011639:Public Opinion; D011728:Pyridones / Q000009:adverse effects / Q000627:therapeutic use; D013188:Sri Lanka / Q000453:epidemiology; D013789:Thalassemia / Q000453:epidemiology* / Q000235:genetics / Q000517:prevention & control / Q000523:psychology / Q000628:therapy; D065227:Transfusion Reaction
chemical_list: D007502:Iron Chelating Agents; D011728:Pyridones; D000077543:Deferiprone; D003676:Deferoxamine