National Health MissionMaharashtra

Sickle Cell Disease Control Program

Sickle Cell Anemia is a serious condition in which the red blood cells can become sickle-shaped (that is, shaped like a "C"). Normal red blood cells are smooth and round like a doughnut without a hole. They move easily through blood vessels to carry oxygen to all parts of the body. Sickle-shaped cells do not move easily through blood vessels; they are stiff and sticky, and tend to form clumps and get stuck in blood vessels. The clumps of sickle cells block blood flow in the blood vessels to the limbs and organs. Blocked blood vessels can cause pain, serious infections and organ damage.

Abbreviations –
PHC – Primary Health center
RH- Rural Hospital
SDH – Sub District Hospital
DH- District Hospital
WH – Women Hospital
HPLC –High Performance Liquid Chromatography

Considering the prevalence in 34 districts it is decided to implement The Program in Phase wise manner as follows:

Phase I(2007-08)  :Thane, Nashik, Nandurbar, Amravati, Gondia, Gadchiroli,Palghar (New District Established in 2014)
Phase II(2009-10) :Bhandara, Nagpur, Chandrapur, Wardha, Yavatmal
Phase III(2010-11):Dhule
Phase IV(2011-12) :Jalgaon, Nanded, Washim, Akola, Bhuldhana, Aurangabad, Raigad.
Phase V(2012-13)  :Hingoli (as per order of Hon. Lokayukta, Maharashtra state, Hingoli district is included)
Phase VI(2016-17) :Ratnagiri, Sindhudurg, Kolhapur, Satara, Sangli, Ahamadnagar, Pune, Solapur, Jalana, Parbhani, Beed, Latur & Osmanabad. (As per new Hemoglobinopathy guidelines of GOI)

Objectives and Goal of the program:

  • Creating Public awareness.
  • Screening general population. (Target age group 1 to 30 years, Pregnant women, family members, Symptomatic individuals of all ages)
  • Training of Medical officers & other paramedical staff at PHC, RH & DH for testing, counselling & treatment.
  • Equipping hospitals with electrophoresis machines.
  • Providing screening facilities at Primary Health Centre, Rural Hospitals, Sub District Hospital & District Hospital.
  • Referring positive cases from Solubility positive samples for electrophoresis test to nearest Electrophoresis testing Centre.
  • Identifying carrier & sufferer.
  • Issuing yellow cards to carriers and red cards to diseased individuals.
  • Counselling carriers& sufferers for marriage and family planning &Sufferers for importance of regular treatment.
  • Providing Prophylactic & Symptomatic treatment at Primary Health Centre, Rural Hospitals & District Hospitals.
  • Speciality treatment at District Hospital & Medical College.

Role of NGO's in Sickle Cell Program in districts

  • To Create Awareness about Sickle Cell Disease.
  • To motivate community for Solubility test.
  • To transport Solubility positive blood samples for electrophoresis test.
  • To register Sickle cell sufferer & carrier.
  • To Counsel Sickle cell sufferer & carrier for marriage and family planning. Sufferers are counselled for regular treatment & Counselling for prenatal diagnosis (CVS)is given to eligible couples.
  • To distribute colour coded cards. (Red-Sufferer, Yellow-Carrier, White-Negative)
  • Home Visits to Sufferers.
  • To prepare& distribute IEC in local/tribal language
  • Pregnant mother to counsel for early registration & prenatal diagnosis.
    Arrange meetings & testing camps for Schools, Collages & Ashram Schools etc.
District Name of NGO Appointed
Thane Navoday Gramin Sanstha, Jawhar, Thane
Nashik Gauri samajik Sanstha, Nashik
Nandurbar Jijau Maratha Mahila Samaj Unnati Mandal, Nandurbar
Gondia Prabuddha Vinayaki kalyankari Sanstha, Tiroda, Gondia
Gadchiroli 1.Arogyadham Kustharog Nirmulan Sanstha, Kurkheda, Gadhciroli
2. Ektal Samajik Shishan Sanstha, Gadchiroli
Nagpur Aniket Bahuuddeshiya Sanstha, Nagpur
Wardha Shri Namdev Maharaj Bahuuddeshiya Shikshan Sanstha, Wardha
Chandrapur Sarvodaya Yuvavikas Sanstha, Chimur, Chandrapur
Bhandara Bharatiya Aushadhi Anuisandhan Sanstha, Bhandara

Institution wise Testing & Services to be provided

In this program to achieve the objective basic screening test is being made available at all the health institutes in project area. Positive samples in basic screening test (Solubility test) are sent to Electrophoresis centre for confirmatory test i.e. Electrophoresis test

Institution wise services to be provided in SCDCP are as follows

Institute

Services to be provided

PHC/ RH/ SDH/ WH/ DH

          1.Free Solubility testing

          2.Free Electrophoresis testing (only if Electrophoresis centre)

          3.Counseling

         4.Regular Health checkup of Sufferer

         5.Prophylactic & Symptomatic  treatment to be provided

        6.Maintenance of  records & register

        7.Blood transfusion to Sickle cell Sufferer if blood storage centre or blood bank is available

       8. HPLC Test (at HPLC Centre)

       9.Telemedicine referral

Institutions involved at districts in SCDCP

Sr. No. Name of District No. of PHC'S No. of RH/SDH No. of DH No. of WH No. of Medical College No. of Electrophoresis testing centers
1 Thane 53 13 1 0 1 2
2 Palghar 37 10 0 0 0 3
3 Nashik 52 13 1 0 0 4
4 Nandurbar 58 14 1 0 0 5
5 Amravati 56 13 1 1 0 7
6 Gondia 39 12 1 1 0 5
7 Gadchiroli 45 12 1 0 0 7
8 Nagpur 49 11 0 1 2 4
9 Wardha 27 8 1 0 0 3
10 Chandrapur 58 13 1 0 0 5
11 Bhandara 33 9 1 0 0 3
12 Yavatmal 63 17 0 0 1 5
13 Dhule 41 8 1 0 1 3
14 Jalgaon 77 20 1 0 0 7
15 Nanded 65 16 0 0 1 5
16 Washim 25 7 1 0 0 2
17 Akola 30 6 0 1 1 3
18 Buldhana 52 15 1 0 0 5
19 Aurangabad 50 13 0 0 1 4
20 Raigad 52 13 1 0 0 4
21 Hingoli 24 4 1 0 0 2
Total 950 237 15 4 8 88

Manpower provided at districts level in Sickle Cell Disease Control Program

Sr. No.

Name of District

District Sickle Cell Coordinator

No. of  NGO’s

No. of Lab Technicians in Electrophoresis testing centers

Taluka Sickle cell Assistant in new districts

No. of Counsellor in Day Care Centre

No. of Lab Technician in Day Care Centre

1

Thane

1

0

2

2

0

0

2

Palghar

1

1

3

0

1

1

3

Nashik

1

0

4

7

1

1

4

Nandurbar

1

0

5

3

1

1

5

Amravati

1

0

7

7

2

2

6

Gondia

1

1

5

0

2

2

7

Gadchiroli

1

1

7

0

1

1

8

Nagpur

1

1

4

0

1

1

9

Wardha

1

1

3

0

1

1

10

Chandrapur

1

1

5

0

1

1

11

Bhandara

1

1

3

0

1

1

12

Yavatmal

1

0

5

8

0

0

13

Dhule

1

0

3

2

0

0

14

Jalgaon

1

0

7

7

1

1

15

Nanded

1

0

5

8

0

0

16

Washim

1

0

2

3

1

1

17

Akola

1

0

3

3

1

1

18

Buldhana

1

0

5

6

1

1

19

Aurangabad

1

0

4

4

0

0

20

Raigad

1

0

4

7

1

1

21

Hingoli

1

0

2

2

1

1

Total

21

7

88

69

18

18

Year wise Physical Progress

Year

Total  test performed

Total Sufferers

Total Carriers

2014-15

3063505

2135

28968

2015-16

3715070

1887

25646

2016-17

1363035

929

11447

2017-18

1148062

1077

12702

2018-19

April 2018 to Sept 2018

253821

239

2953

Total

9543493

6267

81716

Sickle Cell District wise Performance

Sr. No.

District

April 2013 to March 2014

April 2014 to March 2015

Total Solubility test

Diseased

Carrier

Total Solubility test

Diseased

Carrier

 1

Thane

257769

61

650

63633

9

79

2

Palghar

 

 

 

175411

64

714

3

Nashik

203039

28

388

197639

49

374

4

Nandurbar

203796

328

4132

147389

413

3585

5

Amravati

148044

228

2709

164538

223

1700

6

Gondia

177995

106

1242

196753

128

1788

7

Gadchiroli

254350

188

4512

201808

187

3683

8

Nagpur

290488

241

3702

298683

224

4291

9

Wardha

153067

178

2191

132279

152

2215

10

Chandrapur

317773

357

4613

252842

263

4158

11

Bhandara

156586

122

1877

103540

53

1051

12

Yavatmal

169133

158

3440

119567

94

2137

13

Dhule

166020

49

961

143650

65

1238

14

Jalgoan

213364

45

415

197292

58

434

15

Nanded

169014

23

256

109056

16

246

16

Washim

134071

27

414

108394

42

289

17

Akola

130074

39

614

96153

27

350

18

Buldana

237950

40

279

102000

70

313

19

Aurangabad

205564

7

94

83975

25

59

20

Raigad

124812

7

62

101273

5

55

21

Hingoli

134570

23

344

67630

26

222

 

Total

3847479

2255

32895

3063505

2193

28981

Sr. No.

District

April 2015 to March 2016

April 2016 to March 2017

Total Solubility test

Diseased

Carrier

Total Solubility test

Diseased

Carrier

1

Thane

44264

6

26

17986

3

12

2

Palghar

159790

64

469

67220

31

202

3

Nashik

164013

32

261

40847

20

200

4

Nandurbar

49179

336

2005

17894

40

138

5

Amravati

250424

198

2313

46845

42

464

6

Gondia

256647

72

1629

106459

57

868

7

Gadchiroli

248402

269

4304

145363

209

2785

8

Nagpur

247609

214

3207

133393

145

2053

9

Wardha

165202

122

1855

73121

53

745

10

Chandrapur

295677

178

2812

186132

157

1937

11

Bhandara

183935

89

1243

73789

48

481

12

Yavatmal

236822

99

2294

57185

59

662

13

Dhule

198837

64

974

77948

22

370

14

Jalgoan

187256

53

477

87091

14

58

15

Nanded

159810

29

279

50638

14

120

16

Washim

145749

21

340

25665

8

72

17

Akola

162542

15

550

42771

7

183

18

Buldana

190550

29

434

37928

7

38

19

Aurangabad

145330

7

67

9793

0

8

20

Raigad

101850

9

49

36044

3

15

21

Hingoli

121182

10

107

28923

8

39

Total

3715070

1916

25695

1363035

947

11450

Sr. No.

District

April 2017 to March 2018

April 2018 to Sept 2018

Total Solubility test

Diseased

Carrier

Total Solubility test

Diseased

Carrier

1

Thane

43465

8

49

5455

1

11

2

Palghar

52449

52

387

13601

10

92

3

Nashik

38063

21

156

8769

7

19

4

Nandurbar

37419

140

611

6373

35

39

5

Amravati

20888

93

576

8839

27

192

6

Gondia

35444

86

1153

5943

23

236

7

Gadchiroli

127564

101

1716

33466

11

573

8

Nagpur

194220

139

2852

39106

41

638

9

Wardha

50294

51

864

14801

9

151

10

Chandrapur

136518

144

1863

19535

20

596

11

Bhandara

77870

72

642

28499

22

126

12

Yavatmal

36731

38

493

15731

2

24

13

Dhule

101400

44

710

18332

14

110

14

Jalgoan

24700

18

37

4700

0

6

15

Nanded

28644

25

119

6078

3

9

16

Washim

25784

7

59

4985

1

0

17

Akola

31117

19

328

9220

7

126

18

Buldana

15000

10

16

1500

0

0

19

Aurangabad

20171

0

0

4292

0

3

20

Raigad

20283

1

18

100

0

0

21

Hingoli

30038

8

53

4496

6

2

Total

1148062

1077

12702

253821

239

2953

Impact of counselling (April 2009 to Sept 2018)

Impact of counselling  (April 2009 to Sept 2018)

Sr. No

Name of District

Total Carrier

Total Sufferer

Total Married

No. Married couple tested

No. married to healthy partner

Carrier

Sufferer

Carrier

Sufferer

Carrier

Sufferer

1

Thane

729

64

298

12

298

12

223

7

2

Palghar

5627

560

2400

154

2388

153

2120

138

3

Nashik

2936

194

1060

53

1045

53

768

44

4

Nandurbar

34971

3622

13275

910

9232

544

8118

471

5

Amravati

10616

1149

4080

251

2499

156

1764

122

6

Gondia

10279

978

4312

263

4312

263

3950

247

7

Gadchiroli

27585

2221

11238

615

11099

587

10552

549

8

Nagpur

21661

1236

11586

309

11541

303

10225

276

9

Wardha

12474

946

5181

199

5179

197

4667

178

10

Chandrapur

29437

2447

14960

591

14913

586

13661

555

11

Bhandara

12156

646

5267

176

5204

171

4583

148

12

Yeovatmal

25810

1277

10632

317

10579

305

10094

288

13

Dhule

7272

835

2416

208

2405

204

2316

182

14

Jalgoan

2352

249

903

50

903

50

615

17

15

Nanded

1377

135

477

39

477

39

470

32

16

Washim

1671

160

492

22

492

22

492

22

17

Akola

3244

180

1467

39

1455

38

1411

38

18

Buldana

1512

236

602

51

602

51

588

46

19

Aurangabad

284

46

146

9

92

2

74

2

20

Raigad

298

35

138

5

138

5

118

3

21

Hingoli

855

86

247

22

188

16

184

16

TOTAL

213146

17302

91177

4295

85041

3757

76993

3381

 
Treatment  (April 2009 to Sept 2018)

Treatment  (April 2009 to Sept 2018)                                              

 (Give  information of all sufferers in the district)

Sr. No

Name of District

Total Sufferer

Treatment Given

Prophylactic treatment (Folic Acid & Vit C

Symptomatic treatment (Pain killer Antibiotic etc.)

Hydroxyurea

Blood Transfusion

No. of patients given treatment in Day Care Centre

referred to Higher centre

Referred through Telemedicine Specialist

1

Thane

64

64

2

6

4

1

2

17

2

Palghar

560

558

0

17

31

8

25

66

3

Nashik

194

193

35

71

61

92

3

112

4

Nandurbar

3622

3447

412

0

129

164

0

952

5

Amravati

1149

1074

59

481

1030

4625

20

83

6

Gondia

978

978

883

47

1504

1805

17

567

7

Gadchiroli

2221

2220

1913

312

779

5147

32

566

8

Nagpur

1236

1236

345

22

301

2462

433

896

9

Wardha

946

946

390

19

479

3987

67

343

10

Chandrapur

2447

2447

773

291

879

2175

147

978

11

Bhandara

646

646

111

13

119

4070

0

757

12

Yeovatmal

1277

1272

163

1

303

0

96

15

13

Dhule

835

835

22

26

24

20

58

58

14

Jalgoan

249

249

46

13

40

44

30

74

15

Nanded

135

135

48

42

59

0

24

23

16

Washim

160

160

68

16

183

173

1

310

17

Akola

180

180

8

2

3

180

4

87

18

Buldana

236

228

16

18

58

58

12

236

19

Aurangabad

46

46

31

2

3

0

1

1

20

Raigad

35

32

5

14

28

32

21

45

21

Hingoli

86

86

7

0

3

723

0

90

TOTAL

17302

17032

5337

1413

6020

  <td "="">

25766

993

6276

Government Decisions /Schemes for Sickle cell Patients

  • Provision of Free Blood from Government approved blood banks to Sickle cell patients dated 5th Dec 2001 acc. to GR Free blood Transfusion and treatment to be given to sickle cell patients in all government & semi government hospitals.

  • Sanjay Gandhi Niradhar Yojna dated 26th Oct 2010 Acc. to GR Rs. 600/- monthly will be given to sickle cell patients.

  • Rajeev Gandhi Jeevandayi  Arogya Yojna dated 31/05/2011 Acc. to the GR Treatment for Sickle cell anemia is included in RGJAY General Medicine (780-799) & pediatrics (800-866).

  • Celebration of sickle cell week from 11th Dec to 17th Dec dated 23rd June 2009. Acc. to GR I.E.C will be carried out in sickle cell prevalent districts to increase awareness about sickle cell anemia among tribal people.

  • Free ST Travel to Sickle cell sufferers along with one companion dated 10/03/2015 Acc. to the GR free travel will be allowed to sickle cell sufferers along with one companion for treatment purpose.

  • With the reference of Government GR No. RGJAY-2016/Section No. 64/Health-6 Dated.08 July, 2016 w.e.f. Rajeev Gandhi Jeevandayee Arogya Yojna will come to end and Mahatma Jyotiba Fhule Jeevandayee Arogya Yojna will be initiated under which Total Hip Replacement (Procedures No. 981,982) andTotal Knee Replacement (Procedures No. 983) are included.

Special Innovations :

  • 2 bedded Day Care Centers are established in 16 District Hospital and 5 Women Hospital for Sickle Cell patients and Thalassemia patients.
  • 18 Sickle Cell Counselors and 18 Lab technicians are sanctioned for Day Care Centers              in 2018-19.
  • 25766patients took benefits of Day Care Centre up to Sep. 2018.
  • Special attention in Quality control in Sickle Cell test.
  • 7 H.P.L.C. machines are made available at Thane, Nashik, Amravati, Chandrapur, Gadchiroli, Nagpur & Nandurbar district for sickle cell testing.
  • 6276patients took benefits ofTelemedicine facility up to Sep. 2018.
  • Other than 21 districts in remaining 13 districts program is being implemented in integration with RBSK teams.
  •  In existing 21 districts coordination with RBSK team is established for screening of school students and anganwadi children's.
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