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Sickle Cell Anemia Control Program (A Major Tribal Health Program of Gujarat) Health & Family Welfare Department Gandhinagar, Gujarat Presentation by :

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Presentation on theme: "Sickle Cell Anemia Control Program (A Major Tribal Health Program of Gujarat) Health & Family Welfare Department Gandhinagar, Gujarat Presentation by :"— Presentation transcript:

1 Sickle Cell Anemia Control Program (A Major Tribal Health Program of Gujarat) Health & Family Welfare Department Gandhinagar, Gujarat Presentation by : Anju Sharma IAS Mission Director (NRHM) Government of Gujarat

2 Introduction  India has the highest number of Sickle gene carriers in the world, >50% of the world.  Most of tribal belt in India being an endemic area for Malaria, the people living in tribal area are affected by Sickle Cell Anemia.  However, no attempts have been made so far to address the issue related to the disease so far at the national level.

3 3  Sickle Cell Anemia is a major health problem in tribal Gujarat.  A hereditary disease caused by mutant recessive gene  All 12 Tribal districts are involved in Sickle Cell Anemia Control Program Introduction

4 Estimated Prevalence of Sickle Cell Anemia in Gujarat GujaratIndia Total Population6,03,83,6281,21,01,93,422 Tribal Districts12593 Tribal Population*89,12,62317,86,24,549 Suspected Sickle 10.0 %8,91,2621,78,62,455 Suspected Sickle Cell Disease 0.75 % 66,84513, * Provisional

5 Public Health concern : If left untreated – 20% of Sickle disease children die by the age of two. As per one of the ICMR survey 30% of disease children among the tribal community die before they reach adulthood. Even if they survive, life time risk of disease remains same. Being genetic in nature, the numbers are bound to rise, if suitable intervention is not made.

6 Initiative: In the year 2006, the Department of Health & Family Welfare, Government of Gujarat initiated a Public Private Partnership - Sickle Cell Anemia Control Program in 5 districts of south Gujarat. Now by , it has been extended to all 12 tribal districts of Gujarat and Gujarat Sickle Cell Anemia Control Society has been formed under society registration act 21 of Sickle Cell Anemia Control Program – Gujarat Initiative

7  No Sickle Cell Disease childbirth by  Prevention of death from Sickle Cell Crisis.  To improve health status and quality of life of Sickle Cell Anemia patients. GOALS:

8 Normal Red Blood Cell Mutation Rigid & Brittle Sickle Shaped RBC Sickle Cell trapped in Capillaries Causes symptoms Sickle Cell Anemia, Hemolytic Jaundice, Joint Pain, etc. Patho -physiology of Sickle Cell Anemia Pallor Frequent jaundice Bone & Body ache Enlarged Spleen Retarded Growth Frequent Infections Dactylitis (Hand-Foot Syndrome) Treatment trough Folic Acid, Analgesic Antibiotic, Anti helminthes Anti Pyretic, Iron for short duration Anti Malarial if necessary Hydroxyurea & Blood Transfusion in crisis. Patho-physiology of Sickle Cell Anemia

9 Strategies: Timely diagnosis through large scale screening with the help of specialized laboratory tests. Prevention of Sickle disease child birth through adolescent screening, marriage counseling, antenatal screening and prenatal diagnosis. Better management of disease through supportive treatment, follow up and counseling to reduce morbidity and mortality. Reduction in crisis episodes. Saving Lives through referral treatment and specialized hospital care. Building Community Awareness and sensitization of the population through interpersonal communication. Training and capacity building of health service providers.

10 Treatment and follow up Adolescent Screening Antenatal Screening & Husband Screening Newborn Screening Mass Screening Screening Approach Adopted in Program

11 Institutions involved in the program No.InstitutionsYear Year Medical College12 2General Hospital312 3PHC CHC2970 5NGO12 Total

12 12 No. Facilities availableYear Year Primary Screening for Sickle Cell (DTT) test, Counseling and Treatment Hemoglobin Electrophoresis21 3HPLC based Hb Variant system for quantitative estimation of different hemoglobin 23 4HPLC based Variant-NBS system for New Born Screening for SCA from heel prick dry blood samples from filter paper. 01 5Molecular Lab for prenatal diagnosis and Genetic Counseling Center 01 Facilities made available

13 Progress of screened person till June-2011

14 Screening Output - I **Up To June, 2011** Total Tribal Population 64,70,256 Tribal Population Screened for Sickle Cell Anemia 14,51,936 (22.44%) No. of Sickle Cell Trait 1,69,358 (11.66%) No. of Sickle Cell Disease (0.75%)

15 **Up to June, 2011** No. of Adolescents Screened for Sickle Cell Anemia 1,81,365 No. of Adolescents found Sickle Cell Trait (9.71%) No. of Adolescents found Sickle Cell Disease 1020 (0.56%) Screening Output - II

16 Screening Output - III **Up To June, 2011** No. of Antenatal Mothers Screened for Sickle Cell Anemia 2,13,779 No. of Antenatal Mothers found Sickle Cell Trait (7.18%) No. of Antenatal Mothers found Sickle Cell Disease 848 (0.44%)

17 Result of Prenatal Diagnosis after Genetic Counseling Total High Risk Couple to whom Genetic counseling for PND Provided Eligible for Prenatal Diagnosis Agreed for PND with informed Consent and PND carried out against eligibility No. of Fetus Negative For Sickle Disease among screened (24) Fetus Positive for Sickle Disease among screened (24) Sickle Disease Child Birth Prevented * %41.34 %55.81 %58.33 %29.16 %100 % Both the parent have Sickle gene. Rest of the 58 % High Risk Couple were not eligible for Prenatal Diagnosis as they were registered for ANC after 20 weeks of Pregnancy, Hence not eligible for Termination of Pregnancy; even if fetus is Sickle Disease. Steps are being taken for early registration of ANC cases. * Result awaited (1)+ procedure fail (2) 17 ** Up To June, 2011** Screening Output - IV PND Couple

18 Newborn Screening for Sickle Cell Disease from Dried Blood Spots from Heel Prick on Filter Paper Total Newborn Screened Normal Sickle Trait Sickle Disease 5,0374, %12.34%0.75 % All 33 Sickle Disease patient were registered for comprehensive care under the Sickle cell program. Their Parents were provided counseling for care of their children at home as well as both the parents blood were tested and counseled for future pregnancy. 18 Screening Output - V **Up to June, 2011**

19 Marriage Counseling Using Laminated Color Coded Cards Normal Haemoglobin Card Sickle Trait Card Sickle Disease Card Laminated color coded cards are given to all screened persons. These color coded cards are further used for marriage counseling.

20 Treatment Outputs 10,961 Sickle disease patients are given monthly quota of Tab. Folic acid and painkillers for daily use, by field health workers. 57 patients are on Hydroxyurea, given to severe disease patients sickle crisis patients have been given treatment in year blood transfusion were given to sickle disease patients free of cost in 2010.

21 Other Activities  Established network of counseling centers in tribal blocks.  Established mechanism for referral and management of Sickle cell crisis patients.  Capacity building and training of MPHWs, ANMs, Village Health and Sanitation Committees and PRI representatives.  Targeted IEC and BCC  Creation of database and regular reporting and monitoring  Logistics and inventory management of drugs.  Teacher counselling- Students having Sickle Cell Disease have been exempted from physical training and allowed to go to urinals frequently without asking permission.


23 Outcomes Many Sickle cell patients are now able to lead normal lives. Mortality and morbidity due to the disease has reduced. As per survey in 500 sickle cell disease patients, number of crisis has decreased from 2-3 per year to 1 per year in tribal districts. Counseling of 17,613 sickle positive adolescents and for marriage and future pregnancy. Thousands of marriages between sicklers have been avoided in the Tribal Community. Prevented birth of many sickle Cell Diseased children including 7 through PNDT. Mass Awareness about the disease.

24 Socio Economic Impact Before Sickle Cell Disease was in books and academic research papers. NOW The Common Tribal People are most benefited. Today they get regular free medicine at their door step, hence there is marked reduction in crisis. Today they have better Life Span & Functional Status than before. The Fruits of the Program have reached to the door step of Under- served– The Tribal People. 24

25 Impact on Medical Services Before The Medical Practitioners were not aware of sickle phenomena existing among local public. Most of Sickle Disease patients were misdiagnosed and mistreated. Even if Sickle cell was diagnosed, they believed that this is a genetic disease, there is no cure & nothing can be done. Now Awareness among Medical Practitioners has increased dramatically in respect to Diagnosis & Treatment. Marriage counseling, Antenatal Screening and Prenatal Diagnosis are being advised by medical doctors. 25

26 Extraordinary Features of the program Reached to the doorstep of most vulnerable tribal population- 14,51,936. Reduction in the hardship and arresting productivity loss of tribals. Lifecycle approach. Active involvement of NGOs. Community involvement. Capacity building of both Government and NGO staff. Utilization of National and International expertise (ICMR & SCDIO)-Knowledge Sharing, Technical support Application of modern techniques and research in the field situations - Stem cell research etc.

27 Sustainability: Though the program initially started with NGO participation, it has been now been integrated with the general health services through training and capacity building of the government service providers. Program approach gives wider reach and long term focus. Demand generation from the community due to their sensitization and awareness building. Training and capacity building of private service providers. Mass support to the program.

28 Taking up a National Program for Sickle Cell Anemia Control. Components:  Population screening for tribal areas through a life cycle approach  Color Coded Laminated Cards to all the screened beneficiaries.  Training & Capacity building of service providers in screening, disease management and supportive care  Free treatment including blood transfusion to all the sicklers.  Genetic counseling, patient counseling and sensitisation of the community, family, etc.  Community awareness through Mass based campaigns.  Involvement of community & NGOs for better community reach.  Medical education & research in Sickle Cell Anemia. Replication of the Program at National level

29 29 Our Indian Sicklers are Born with Pain Live with Pain & Die with Pain. They hardly Complain. Thank you very much for paying attention to our SICKLERS.

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