Initiatives

Sickle Cell Anemia Control Program

Sickle Cell Anemia Control ProgramSickle Cell Anemia (also known as Sickle Cell Disorder or Sickle Cell Disease) is a genetic blood disorder, where the blood cells contain abnormal sickle shaped hemoglobin (HbS) called sickle hemoglobin. Neither the members of medical community, practicing in tribal areas of India were aware of the existence of Sickle gene in tribal population. This has resulted in misdiagnosis and mistreatment.

The highest frequency of Sickle Cell Disease is found in tropical regions, particularly Sub-Saharan Africa, India and the Middle-East. Migration of substantial populations from these high prevalence areas to low prevalence countries in Europe has dramatically increased in recent decades. The prevalence of Sickle Cell Anemia is highly common in the tribal belt of Central and Southern India. The public health implications of Sickle Cell Anemia are significant leading to poor quality of life, lower life expectancy and higher rates of infant mortality.

Normal blood cells smoothly pass through blood vessels without any obstruction but sickle shaped cells often get entangled resulting in blockage of the blood vessels leading to severe health complications. The diagnosis of SCA is only possible by carrying out a simple special blood test known as Sickling test on RBCs and further testing by either Hb electrophoresis or by HPLC technique to find out whether the person is Sickle Cell Trait (heterozygous) or Sickle Cell Disease (homozygous).

Sickle Cell Anemia Control Program

Common Symptoms of Sickle Cell Anemia

  • Pallor
  • Frequent jaundice
  • Bone & Body ache
  • Enlarged Spleen
  • Retarded Growth
  • Frequent Infections
  • Dactylitis (Hand-Foot Syndrome)

Sickle Cell Anemia in India

Sickle cell disease (SCD) with an estimated 5,200 live births each year is a major public health problem in India. Although SCD has been described in India in numerous ethnic groups, it is most prevalent. Prevalence of Sickle Cell gene is 5 to 34 % in scheduled tribes, who have a high prevalence of socio-economic disadvantage and are frequently medically underserved.

India has also a very huge populations of tribal community about 18 crore and expected to have 1.80 crore sickle cell trait and 14 lakhs of sickle cell disease. These show the big burden on the public health of India.

Estimated Prevalence of Sickle Cell Anemia in Gujarat and India

Sr.No Subject Gujarat (Census 2011) India (Census 2011)
1 Total Population 6,03,83,628 1,21,01,93,422
2 Tribal Districts 12 593
3 Tribal Population @ 14.76% 89,12,623 17,86,24,549
4 Suspected Sickle Trait @ 10.0 % 8,91,262 1,78,62,455
5 Suspected Sickle Cell Disease @ 0.75 % 66,845 13,39,684

Estimated Prevalence of Sickle Cell Anemia in Gujarat and India

Sr.No State Prevalence
1 Madhya Pradesh 0-48.5
2 Maharashtra 0-45.4
3 Tamil Nadu 0-35.3
4 Andhra Pradesh 0-34.6
5 Uttar Pradesh 0-32.6
1 Gujarat 0-30
2 Kerala 0-29.7
3 Karnataka 0-25
4 Orissa 0-12.4
5 West Bengal 0-1.1

Sickle Cell Anemia Control Program of Gujarat

Gujarat has 89.12 lakh tribal population and is expected to have at least 9,00,000 Sickle Cell Trait and 70,000 Sickle Cell Disease patients. The Dhodia, Dubla, Kukna, Gavit, Chaudhary, Halpati, Varli, Kokni, Kathodi, Kolcha, Kotwadia etc. are among the major tribes having Sickle Cell problem in Gujarat. According to ICMR survey amongst the primitive tribes of south of Gujarat, viz; Kolcha, Kotwadia & Kathodi; 30 % of Sickle Cell Disease children die before they reach adulthood (14 years) and the remaining 70 % die by the age of 50.

Sickle Cell Anemia Control Program (SCACP)- Gujarat Time line

Gujarat Time line : Sickle Cell Anemia Control Program (SCACP)

Organogram of Sickle Cell Anemia Control Program

Organisation Structure : Sickle Cell Anemia Control Program (SCACP)

Focus Area

Focus Area : Sickle Cell Anemia Control Program (SCACP)Gujarat is one of the few States in India to incorporate Sickle cell anemia control programme in the existing health services of State Government. Initially this program was started in five district of South Gujarat viz. Surat, Tapi, Navsari, Valsad and Dang on PPP mode with help of NGO name Valsad Raktadan Kendra, Valsad. In 2008, the activities under this program were replicated to the rest tribal districts viz. Bharuch, Narmada, Vadodara, Panchmahal, Dahod, Sabarkantha and Banaskantha with help of Indian Red Cross Society, Ahmedabad. Thus the entire tribal belt of eastern Gujarat was covered from Ambaji to Dang.

Target group

Tribal Population of Gujarat is the target group of this program. But any person suffering from Sickle Cell Anemia is main beneficiary of this program.

Goal

  • No Child birth with Sickle Cell Disease by 2020.
  • Prevention of death from Sickle Cell Anemia.
  • To improve health status and quality of life of Sickle Cell Anemia patients.

Strategies Implemented So far so far……

Screening

Sickle Cell Disease does not have any cure at present; therefore any strategy to deal with the disease should focus on prevention and early diagnosis to ensure effective management of the disease and put off a crisis situation. The Sickle Cell Anemia Control Programme does just that. Its focus is on early diagnosis of the disease, treatment and counselling of patients.

The screening under this program covers the all age group from new born to old age people. The main target group for screening is the adolescents, antenatal and new borne. As this disease is a genetic in nature and there is no cure for this disease, prevention is the only way to keep away this disease. For this marriages between Sicklers and normal or two Sicklers have to be prevented. Therefore 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 to whom they should marry.

Our all Antenatal mothers in the tribal area are screened for Sickle Cell Anemia 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 Antenatal is not registered is early stage, then MTP is not allowed, fetus is delivered and new born screening is done from the blood spot taken from hill prick on filter paper.

All adults and geriatric persons are screened in mass screening camps held in community with the help of tribal development department.

Thus sickle cell anemia screening program covers the whole life cycle. This is the unique feature of the program.

Counseling

Counseling is the key object of this program. All the Sickle Cell traits and Sickle Cell Disease patients are counseled regularly by our trained counselors. Family counseling is done at the door step of this community. All the Adolescents are counseled for their marraige and future pregnancy. All the tribal persons are given color coded card according to their Sickle Cell Status, which will help them in marriage decision. After distributing above cards, adolescents are advised to avoid marriages between two yellow card holders to avoid Sickle Disease child birth.

Treatment

So far 55,10,494 tribal have been screened under this program and out of which 5,20,770 have been found to have Sickle Cell Trait and 29,584 have been detected with Sickle Cell Disease.
All 16,020 Sickle Cell Disease patients diagnosed till now were put in to the comprehensive care system and have been regularly supplied basic medications like Folic Acid and Pain Killers through sub centres and PHCs. IV fluids, antibiotics etc. are also provided at PHCs, CHCs and at higher referral centres. Many of these patients with severe disease were put on Hydroxyurea therapy. Counselors are trained to provide them care & support with follow up.

3,42,104 Sickle Cell Trait – gene carriers were provided counseling about their status and were also provided marriage counseling. Arrangements were created for supply of free blood and blood products to all these patients as and when required in emergency through Regional Blood Centers and First referral Units.

Govt. of Gujarat has signed MOU with GIOSTAR, USA based company for creating stem cell treatment facilities at Govt. Medical College, Surat. Stem cell transplantation will bring a hope of survival for all Sickle cell disease patients in Gujarat.

Gujarat Sickle Cell Anemia Control Society

In the year, 2011 Gujarat Sickle Cell Anemia Control Society was formed to integrate the various activities among different departments of Government and various NGOs for better implementation of the program under Chairmanship of Hon’ble Health Minister and Co-chairmanship of Hon’ble Minister of Tribal Development Department.

Situation before Formation of Society

When program was implemented first in 2006, the activities are done mainly in five districts of South Gujarat then extended to the rest 7 tribal districts in 2008. The main activities were screening, which was done by NGOs and some Government Hospitals. But the integrated activities were not done. Many members of tribal community and doctors also were not aware about this disease, these lead to misdiagnosis and mistreatment. Many Sickle Cell Disease patients were suffered due to not getting proper treatment. Various Government departments especially tribal development department and many NGOs work in this field but there were no integration between them and there may be duplication of work. Program was not focused on treatment and counseling part appropriately. Awareness regarding this disease was also not at desired level.

Activities Carried Out in Program

  • Mass Screening by interested, qualified and competent outsourcing agencies covering Children, Adolescent and Geriatric age group
  • Antenatal Screening
  • Prenatal diagnosis
  • New Born Screening
  • Necessary Lab investigations
  • Counselling, Treatment and Follow up.

Situation after Implementation

The Society has decided to complete the screening of remaining tribal population in next three years to understand actual burden of this disease. To complete this task within time frame in mission mode with help of different NGOs, district wise screening work has been outsourced among interested, qualified and competent agencies. These agencies will do the screening work in villages at field level. Training has been given to all staff of these agencies.

More than 22 thousands SCD patients have been registered and they are getting regular counseling, daily Tab. Folic Acid, Pain Killers when required and other treatment at free of costs at Government Hospital including Tab. Hydroxyurea and Blood Transfusion.

Five more HPLC centers are established in tribal districts for screening, so target can be completed within time frame. The standard treatment guideline is prepared and all the patients of SCD are treated according to this guideline.

Stem Cell Therapy and Research Unit will established at New Civil Hospital, Surat for treatment of SCD patients in collaboration with GIOSTAR, USA.

The program helps in early diagnosis – New Born Screening (NBS), Antenatal Screening, treatment and counseling of Sickle Cell Disease patients including prevention by marriage counseling and prenatal diagnosis as per WHO strategy.

IEC and Training are the important part of any program. Program like SCACP requires more awareness not only in general public but also in health care workers, doctors, social and political leaders. IEC and Training part has been augmented up to ASHA workers and PRI members.

New Approach

To achieve the Goals and objectives of the Program within time frame and to identify the actual burden of disease in society, Gujarat Sickle Cell Anemia Control Society has decided to outsource the screening activity among competent, qualified and interested agencies and enhance the screening activity on mission mode.

Simultanously a high level technical committee has been formed to formulate the standard treatment guideline for Sickle Cell Disease patients. So the identical guideline can be followed in whole state. Gujarat state has included the Pneumococcal vaccine for SCD patients. This committee will study regarding the inclusion of Prophylaxis Penicillin V for less than five year children as this is the main factors of mortality in less than five years of Children of SCD.

Five more HPLC centers are established in tribal districts for screening, so target can be completed within time frame. These HPLC machine are installed at Surat, Vadodara Godhara, Tapi and Valsad. The standard treatment guideline is prepared and all the patients of SCD are treated according to this guideline.

Other Information

Sickle Cell Anemia Control Program of Gujarat state was honoured by "Prime Minister Award for Excellence in Public Administration” by Department of Administrative Reforms and Public Grievances, GoI.

Department of Administrative Reforms and Public Grievances have prepared a film on SCACP program of Gujarat in name of Freedom from Agony. This film and the works done in this program will be road map to other states of India.

Government of Gujarat has requested the Ministry of H. & F.W., GoI to launch a National Sickle Cell Anemia Control Program.

Government of Gujarat is not working separately or independently, But it takes the help of other National as well as International agencies like Government of Chhattisgarh, SCDIO, and GIOSTAR in this field.

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