4. In which ways is the initiative creative and innovative?
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The elements of program mainly aim to early screening of tribal community, proper counseling, preventive measure and administering treatment. Screening activity has been outsourced among seven agencies to cover the entire population in next three year. The screening is done at the field level by trained and qualified staff.
Initially, in 2006, 78 Government and NGO Institutions were involved and now it is extended to 419 centers in all over 12 tribal districts involved in Comprehensive care of SCD patients. HPLC based Hb Variant system for quantitative estimation of different hemoglobin has increased from 2 to 9 in number. HPLC based Variant-NBS system for New Born Screening for SCA from heel prick is now available and the count as of today stands at 6. There is a new addition of one Molecular Lab for prenatal diagnosis and Genetic Counseling Center.
As this disease is more prevalent in unreached, underserved tribal population, inter departmental co-ordination was necessary to address issues like illiteracy, taboos, poverty, lack of awareness, poor accessibility, poor infrastructure, etc . Different departments like Tribal Development, Education, Information, Finance, Youth & Culture departments, etc were provoked to resolve the concerned issues. Also, Gujarat Sickle Cell Anemia Control Society was formed for better & effective implementation in 2011.
The program framework was made in such a way that persons of all age group from new born to old age are covered. Government of Gujarat has adopted policy of screening of adolescents. So we can diagnose the sickle cell gene in pre marriage age and advise them on whom they should marry. Antenatal mothers in the tribal area are screened for SCA at “Mamta Divas”- a special immunization day in village. If mother is found positive for sickle gene, her husband is also screened. If husband and wife both found positive for sickle gene, they are advised for pre-natal diagnosis. If fetus is found to have sickle cell disease, legal MTP is advised. If not possible, MTP is not advised, fetus is delivered and new born screening is done. Five HPLC machines have been installed in five hospitals of tribal area. Thus SCACP covers the whole life cycle which is unique to the program.
Training is a key element of any health program. All the field staff including female health worker, multipurpose health worker and ASHA (Accredited Social Health Activist) had been trained. Medical and Paramedical staff were given training regarding management of SCD patient. Counselors were trained to provide SCD patient care & support with regular follow up.
All SCD patients are put in to the comprehensive care system and have been regularly supplied basic medications like Folic Acid, Pain Killers, IV fluids, antibiotics etc. are provided at PHCs, CHCs and at higher referral centers. Many of these patients with severe disease were put on Hydroxyurea therapy. Prophylactic Pneumococcal vaccine is given to SCD patients.
Sickle Cell Trait – gene carriers are being provided counseling about their status and were also provided marriage counseling. Community health centers are equipped with advanced instruments, facility of blood bank or blood storage units. At Government Medical College, Surat advanced stem cell unit is being developed for treatment of SCD patients.
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5. Who implemented the initiative and what is the size of the population affected by this initiative?
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Sickle Cell Anemia Control Programme was started in 2006 by Health & Family Welfare Department, Gujarat and implemented in most affected five tribal districts and extended to remaining tribal districts in 2008. The program was started as GO-NGOs (Government Organization – Non Government Organization) partnership with Valsad Raktadan Kendra, Valsad, working in the field of Sickle Cell Anemia. Since 2008 Indian Red Cross Society has also become a partner in this program and helps in screening in 7 tribal districts.
Commissioner (Health) is overall head of this program, while Additional Director (Health) is technical in-charge for this program and Deputy Director (Epidemic) is a state nodal officer of this Program. Chief District Health officers are responsible for implementation of program. All the activities of Sickle Cell Anemia Control Program are supervised and monitored through District Epidemic Medical Officer, who is the district nodal officer for SCACP.
Gujarat Sickle Cell Anemia Control Society (registered under society registration act 21 of 1860) was formed in year 2011 under chairmanship of Hon'ble Health Minister and co-chairmanship of Hon'ble Tribal Development Minister. Other secretaries from different department like Tribal Development Department, Finance Department, Panchayat Department, Rural Development Department, Yuth and Cultural Department and all other stakeholders from different branch of Health department.
Gujarat Sickle Cell Anemia Control Society has outsourced district wise screening work among interested, qualified and competent agencies. The details of agencies are as follows.
1. Schamka Technology Pvt. Ltd., Ahmedabad
2. Valsad Raktadan Kendra, Valsad
3. Indian Red Cross Society, Ahmedabad
4. Religare Technology Pvt. Ltd., Noida
5. Indu Health & Research Foundation, Vadodara
6. Kruise Pathline Lab Pvt. Ltd., Ahmedabad
7. Raman Developers, Ahmedabad
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6. How was the strategy implemented and what resources were mobilized?
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The diagnosis of SCA is done by simple blood test known as Sickling test on RBCs. Hb electrophoresis / HPLC (High Performance Liquid Chromatography) technique finds out whether the person is Sickle Cell Trait (heterozygous) or Sickle Cell Disease (homozygous). DTT test is very simple test, which can be done at field level by any health worker after training and very cost effective. Initially before outsourcing the screening, one DTT test was cost about INR 45 to INR 50 and after outsourcing the screening one DTT test costs about INR 33/-only.
HPLC is done for confirmation of disease but it is costly test but it is highly specific and HPLC test requires the expertise of pathology. Before outsourcing one HPLC test was cost about INR 160 to IN R175 but after outsourcing one test costs about INR 144/-only.
An advanced HPLC machine is required which costs for about Rs 5 million. Five HPLC machines have been procured and installed at district hospital in tribal districts.
Before 2012, all the activities of screening ware done by government staff and staff of Valsad Raktadan Kendra, Valsad and Indian Red cross Society. After August 2012, screening activities are being done by staff of outsourcing agencies.
Different activities of program are done by government health staff, mainly Doctors, Paramedical staff, Field health workers and ASHA workers. To achieve the goals of program effectively, additional 180 counselors and 12 Program assistants are appointed in districts. All the medical and paramedical staff has been trained for Sickle Cell Anemia. Refresher training is being given regularly. Members of VHSNC committee, PRI members and private doctors are also oriented about Sickle Cell Anemia, which creates awareness in community. A technical module has been developed and circulated to all stakeholders especially in PHI, where most of patients are treated.
Sickle Cell Anemia is a major public health problem of socioeconomically backward tribal people, so more funds are required. Main financial source of this program is the government budget. State government provides health department about INR 50 million per financial year. Tribal development Department also makes provision of about INR 10 million per financial year for prevention and control of this disease. National Rural Health Mission of central government also provide additional fund for human resources, drugs, IEC, screening etc. In the year 2013-14, INR 10.23 million has been sanctioned.
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7. Who were the stakeholders involved in the design of the initiative and in its implementation?
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Since starting of program in 2006, about 0.4 million populations were screened per year, but after outsourcing the screening activity in 2012 more than 2 million populations have been screened in one year, which help in understanding actual burden of this disease. Till date more than 5 million people have been screened and more than 20,000 Sickle Cell Disease patients are identified. These all patients are getting free of treatment, regular counseling, vaccination, and referral services at their doorstep.
Now due to available facilities in this program, the common tribal people are most benefited. Today they get regular free medicine at their door step, crisis are managed at CHCs, Civil Hospitals and at Medical collages and hence reduction in crisis. Better and persistent health care has reduced morbidity & mortality due to this disease and the economic loss to this community is also decreased.
Before initiation of program only research papers on Sickle Cell Anemia were published in Journals & Conferences but fruits of this Research had not been reached to the needy person. The Fruits of the program have reached to the door step of under-served– The Tribal People.
The many of the medical practitioners were not aware of sickle phenomena existing among local public. Most of Sickle Cell Disease patients were misdiagnosed and mistreated. But now awareness among medical practitioners due to various activities involving medical persons has increased dramatically in respect to Diagnosis & Treatment. Marriage counseling, Antenatal screening and prenatal diagnosis are being advised by medical doctors.
This program has set up an example for many states grappling with this problem. This successful model has a scope of replication in other states under NRHM. The other state like Chhattisgarh having the largest tribal population has adopted some policy from this program. The program has the potential of being taken up as a national program. The state health department has suggested the Ministry of Health & Family Welfare, Government of India to launch a National Sickle Cell Anemia Control Program.
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8. What were the most successful outputs and why was the initiative effective?
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The Sickle Cell Anemia Control Program is supervised and monitored at state level, district level and Block level regularly. Additional Director (Health) is technical in-charge for this program. Deputy Director (Epidemic), state nodal officer of this program is responsible for implementation of this program in state.
Chief District Health officer is at district level. All the activities of Sickle Cell Anemia Control Program are supervised and monitored by District Epidemic Medical Officer (EMO), who is the district nodal officer for Sickle Cell Anemia Control Program.
At district level, EMO supervises the activities and collect the data from PHC level through Block health office. Medical Officer at PHC look after the activity in his area done by agency and report to district office monthly.
ASHA helps in mobilizing the beneficiary for screening, for its work, she gets INR 1/- per test. District officers supervise the screening done at village level. Liaison Officers from state as well as district supervise the activities.
Work done is monitored and reviewed by district officer in monthly meeting and reports to state office. Review is also taken up by DD Epidemic in EMO review meeting.
Screening done at field level is cross checked by district health authority blindly. 2% of DTT negative and 5% of positive samples are cross checked and doubted samples are sent to Government Medical College Surat for confirmation.
All the agencies have to submit the certificate from Sarpanch (Village head) after completion of screening in village for satisfactory work.
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9. What were the main obstacles encountered and how were they overcome?
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Sickle Cell Anemia is major public health problem of tribal population. These people are socioeconomically backward with low literacy rate. These people believe too much in superstitious. They don’t accept any newer scientific method of treatment and allopathic drugs easily. Therefore it is very difficult to implement the program in this community. Most of these people reside in remote and forest area, at which infrastructure, man power, etc. are not easily available. Migration is major obstacle in regular follow up of SCD patient. Early registration of ANC and regular follow up is not practice in tribal people. So ANC screening cannot be done at proper time.
Health problem of tribal people are on the top priority of health department. Looking into magnitude of this problem in tribal people, Government has started separate program for prevention and control of Sickle Cell Anemia, so it can be focused specially. SCACP has started as Go-NGO partnership program, because the knowledge and experience of the NGO, particularly working in this field and area can be utilized. Program aims not only to screening and treatment of disease but to counseling also. So awareness is created regarding disease and the further transmission of gene can be prevented to next generation.
Gujarat Sickle Cell Anemia Control Society is formed in year 2011 to integrate all the activities done by different departments and NGOs in Gujarat for prevention and control of disease under one umbrella. All the funds for this disease are utilized through the society. Treatment centers in tribal area are equipped with instruments, drugs, etc. This tribal people trusts very much on their local elected members. So the elected members of village, Block and districts are involved and informed regarding disease and control program, which help in creating awareness, acceptance of different treatment modality and truth about disease.
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