Sickle Cell Anemia Control Program (A Major Tribal Health Program of Gujarat)

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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
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Introduction

• India has the highest number of Sickle gene
  carriers in the world, gt50 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.

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Introduction

• 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

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Estimated Prevalence of Sickle Cell Anemia in Gujarat Estimated Prevalence of Sickle Cell Anemia in Gujarat Estimated Prevalence of Sickle Cell Anemia in Gujarat
Gujarat India
Total Population 6,03,83,628 1,21,01,93,422
Tribal Districts 12 593
Tribal Population 89,12,623 17,86,24,549
Suspected Sickle Trait _at_ 10.0 8,91,262 1,78,62,455
Suspected Sickle Cell Disease Patients _at_ 0.75 66,845 13,39.684
Provisional
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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.

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Sickle Cell Anemia Control Program Gujarat
Initiative
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 2010-11, 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 1860.
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GOALS

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

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Patho-physiology of Sickle Cell Anemia
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.
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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.

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Screening Approach Adopted in Program
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Institutions involved in the program
No. Institutions Year 2006-07 Year 2011
1 Medical College 1 2
2 General Hospital 3 12
3 PHC 44 333
4 CHC 29 70
5 NGO 1 2
Total Total 78 419
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Facilities made available
No. Facilities available Year 2007-08 Year 2011
1 Primary Screening for Sickle Cell (DTT) test, Counseling and Treatment 78 419
2 Hemoglobin Electrophoresis 21 21
3 HPLC based Hb Variant system for quantitative estimation of different hemoglobin 2 3
4 HPLC based Variant-NBS system for New Born Screening for SCA from heel prick dry blood samples from filter paper. 0 1
5 Molecular Lab for prenatal diagnosis and Genetic Counseling Center 0 1
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Progress of screened person till June-2011
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Screening Output - I
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 10961 (0.75)
Up To June, 2011
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Screening Output - II
No. of Adolescents Screened for Sickle Cell Anemia 1,81,365
No. of Adolescents found Sickle Cell Trait 17613 (9.71)
No. of Adolescents found Sickle Cell Disease 1020 (0.56)
Up to June, 2011
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Screening Output - III
No. of Antenatal Mothers Screened for Sickle Cell Anemia 2,13,779
No. of Antenatal Mothers found Sickle Cell Trait 15367 (7.18)
No. of Antenatal Mothers found Sickle Cell Disease 848 (0.44)
Up To June, 2011
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Screening Output - IV
Result of Prenatal Diagnosis after Genetic Counseling Result of Prenatal Diagnosis after Genetic Counseling Result of Prenatal Diagnosis after Genetic Counseling Result of Prenatal Diagnosis after Genetic Counseling Result of Prenatal Diagnosis after Genetic Counseling 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
104 43 24 143 7 7
100 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)

PND Couple
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Up To June, 2011
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Screening Output - V
Newborn Screening for Sickle Cell Disease from Dried Blood Spots from Heel Prick on Filter Paper Newborn Screening for Sickle Cell Disease from Dried Blood Spots from Heel Prick on Filter Paper Newborn Screening for Sickle Cell Disease from Dried Blood Spots from Heel Prick on Filter Paper Newborn Screening for Sickle Cell Disease from Dried Blood Spots from Heel Prick on Filter Paper
Total Newborn Screened Normal Sickle Trait Sickle Disease
5,037 4,377 622 38
86.89 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.

Up to June, 2011
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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.
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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.
• 1675 sickle crisis patients have been given
  treatment in year 2010.
• 1531 blood transfusion were given to sickle
  disease patients free of cost in 2010.

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• 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.

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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.

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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.
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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.
  

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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.

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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.

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Replication of the Program at National level

• 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.

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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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