Comprehensive Program for Prevention of Hemoglobinopathies in Gujarat
Hemoglobinopathies are genetic disorders prevalent in Gujarat, particularly impacting the tribal population. The program focuses on reducing the burden of diseases like thalassemia major and sickle cell disease through early screening, diagnosis, treatment, and counseling. It includes components such as crisis reduction, mortality prevention, regular follow-up, prenatal diagnosis, and community awareness initiatives. The program has achieved significant successes in screening, treatment, and prevention efforts, ultimately aiming to improve the quality of life for affected individuals and families.
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Prevention of Hemoglobinopathies Health & Family Welfare Department, Gujarat In co-ordination with IRCS,Gujarat www.gujhealth.gov.in 1 Health & Family Welfare Dept, Govt of Gujarat
Hemoglobinopathies- A Genetic Disorder Model developed as per guideline of MoHFW, GoI Yearly 10-12 thousand children with -thalassemia major(prevalence 3-17%) and 5,200 with Sickle cell disease(prevalence 5-34%) are born in India Gujarat have 14.8% tribal population having high prevalence of Sickle cell Disease and low accessibility to health services. Few communities (Lohana,Sindhi) in Gujarat have high prevalence of Thalessemia. (prevalence around 4-15%) Reducing burden of Hemoglobinopathies, through Screening, Early Diagnosis, Prompt Treatment and Counseling for preventing transmission of disease to next generation. Minimize morbidity, mortality and thereby increasing productivity, longevity and quality of life www.gujhealth.gov.in 8 2 Health & Family Welfare Dept, Govt of Gujarat
Program components Reduction in crisis & in mortality Regular follow up , counseling Supportive treatment Life saving drugs & Vaccination Day Care Center Advanced tertiary care centers Care during pregnancy Regular Training and capacity building of Health care providers VHSNC (Gram Sanjeevani Samitis) members & Teachers Early diagnosis through Screening-Newborn ,Adolescent Premarital and Antenatal Cascade screening and School screening. Prenatal Diagnosis Prevention through Marriage Counseling Genetic Counseling Building Community Awareness www.gujhealth.gov.in 3 Health & Family Welfare Dept, Govt of Gujarat
Program in Gujarat (92%) tribal population screened for Sickle Cell, 7. 30 lac are Sickle Cell Trait and 29,266 are Sickle Cell Disease. All SCD patients are given Tab Folic Acid, More than 21000 SCD patients received pneumococcal vaccine and Around 700 patients are on Tab Hydroxyurea to minimize the risk of crisis & death All diagnostics for hemoglobinopathies are Free. 4700 Iron chelation, Factor A free. 50 Bone marrow transplantation. Difficult to get donors. Some siblings and unrelated matched donors were helpful.. www.gujhealth.gov.in 4 Health & Family Welfare Dept, Govt of Gujarat
Program in Gujarat In last year , more than 1.10 lakh ANC screened- 2737 ANC were Sickle Cell Trait and 126 were Sickle Cell Disease. Total 11995 couple counseled for prenatal diagnosis - 892 PND done. From which 195 Thalassemia Major and 12 were SCD , which undergone for MTP. thus total 207 birth with hemoglobinopathies could be prevented. More than 1.2 lakhs New Borne screened. Out of which 6600 were thalassemia minor, 9 were Thalassemia Major and 145 were SCD www.gujhealth.gov.in 5 Health & Family Welfare Dept, Govt of Gujarat
Special Features of the program Reaching needy and most vulnerable population through active involvement of NGOs and community. Program is now fully integrated with General Health Services ensuring wider reach and long term focus. Sensitization and awareness building resulted in demand generation from the community. Lifecycle approach. Pre natal Diagnosis Regular Counseling at doorsteps of beneficiaries Capacity building of both Government , NGO and private practioners. Disease patient registry and ensuring regular medical check up of disease patient www.gujhealth.gov.in 6 Health & Family Welfare Dept, Govt of Gujarat
Learning Scientific approach, strong political commitment and inter-sectoral convergence reducing disease burden and medical relief to patients. Blood storage unit in every Taluka provides free blood transfusion to all patients with hemoglobinopathies. Advanced stem cell research center and Stem Cell Research Laboratory is being established at New Civil Hospital, Surat with collaboration of GIOSTAR, USA. The scientists team from Japan extending help in the research activity. www.gujhealth.gov.in 7 Health & Family Welfare Dept, Govt of Gujarat
Sickle Cell Screening Camp at Village Level SCD Follow up Camp at Village Level & Counseling
SCA requires Priority Attention.! Indian patients with hemoglobinopathies Born with Pain Live with Pain & Die with Pain. They hardly Complain No more children to be born with hemoglobinopathies in Gujarat Thanks www.gujhealth.gov.in 9 Health & Family Welfare Dept, Govt of Gujarat
