Prevalence of Thalassemia Major
and Hepatitis C
March 2013
In collaboration with
Children’s Liver Foundation (Sukhbir Kaur)
THINK Foundation (Vinay Shetty)
Thalassemia and Sickle society, Hyderabad (Suman Singh )
DMC Hospital, Ludhiana (Ajit Sood)
SGPGI, Lucknow (Shubha Phadke, Anjurani)
Thalassemia Welfare Association, Chennai (Revathi Raj)
Thalassemia Major and Hepatitis C
• Average carrier rate of thalassemia in India is 3%.
• Approx 100,000 children with β thalassemia major in
India
• Estimated prevalence of HCV in general population-0.08
-4%
• Thalassemia major patients is a high risk group on
account of being multi-transfused
• Mandatory testing of HCV was only implemented in 2001
Thalassemia Major and Hepatitis C
AIM
Prevalence of Hepatitis C in multi blood transfused patients
of Thalassemia Major
DATA COLLECTED FROM
•
•
•
•
•
THINK and Children’s Liver Foundation, Mumbai
Thalassemia and Sickle Society, Hyderabad
DMC Hospital, Ludhiana
SGPGI, Lucknow
Thalassemia Welfare Association, Chennai
Anti HCV Positive (%)in current survey
CENTERS
THALASSEMIA MAJOR PTS
ANTI HCV POSITIVE (%)
MUMBAI (12 DAY CARE)
953
118 (12.4)
CHENNAI
206
31 (15)
HYDERABAD
1500
8 (0.5)
LUCKNOW
308
28/242 (11.6)
LUDHIANA
192
58 (30.2)
TOTAL
3159
243 (7.7)
PUBLISHED DATA
Author
Year of Publication
Geographic
Location
% anti HCV positive
Bhattacharya DK
1991
Calcutta
14.3
Amrapurkar D
1992
Mumbai
17.5
Williams TN
1992
Delhi
11.1
Aggarwal MB
1993
Mumbai
16.7
Chopra K
1994
Delhi
62
Choudhry UP
1998
Lucknow
30
Mohammed I
2002
Delhi
30
Marwaha RK
2003
Chandigarh
54.4
Mishra D
2004
Delhi
27
All data prior to mandatory HCV screening of blood, which started in June 2001
Pre and post mandatory testing
Prior to 2001
Now
West India
17.5
(Mumbai)
12.4
(Mumbai)
North India
35.75
(Chandigarh, Delhi,
Lucknow)
21
(Ludhiana/Lucknow)
South India
NA
7.5
(Chennai, Hyderabad)
East India
14.3
(Calcutta)
NA
Overall
22.5
13.6
Sex distribution
Centers
MALE %
(Anti HCV positive patients
analysed)
FEMALE %
MUMBAI (46)
60.9
39.1
LUCKNOW (22)
63.6
36.4
LUDHIANA (40)
70
30
CHENNAI (30)
46.7
53.3
HYDERABAD (8)
75
25
MEAN
63.1
36.9
Age
Age in years
(Number of
patients analysed)
Mumbai
(46)
Chennai
(30)
Hyderabad Lucknow
(8)
(22)
Ludhiana
(58)
Mean (Range)
21 (19-35)
15 (5-35)
16 (9-21)
19 (6-32)
12 (3-37)
Median
19
12
16
20
10
Overall mean
(range)
16.6 (3-37)
Age (in months) at FIRST TRANSFUSION
Age (In months)
of first transfusion
Mumbai
Chennai
Hyderabad
Lucknow
Ludhiana
Mean (Range)
9 (2-60)
11 (6-36)
9.7 (3-16)
18 (4-48)
NA
Median
6
6
12
12
Religion
CENTERS
(No. of
patients
analysed)
MUMBAI CHENNAI HYDERABAD
(46)
(30)
(8)
LUCKNOW
(22)
LUDHIANA OVER
(40)
ALL%
Hindu (%)
40 (89)
22 (55)
Muslim (%) 3 (6.5)
Sikh(%)
28 (93.4)
4 (50)
21 (95.5)
1(3.3)
4 (50)
1 (4.5)
2 (4.5)
Christian (%) 1 (2.2)
6.2
18 (45)
1(3.3)
78.8
13.6
1.4
CO-INFECTION
MUMBAI
CHENNAI
HYDERABAD
LUCKNOW
LUDHIANA
HBV
1
0
0
1
0
HIV
2
0
0
0
0
MODE OF DETECTION
MUMBAI
CHENNAI
HYDERABAD
LUCKNOW
LUDHIANA
Routine Screening 42 (91.2)
27 (90)
8 (100)
22 (78.6)
NA
Abnormal LFT
1 (2.2)
3(10)
Decompensated
liver disease
1 (2.2)
Pre op check
1 (2.2)
Not available
1 (2.2)
6 (11.4)
HCV GENOTYPE
GENOTYPE
MUMBAI
(12)
CHENNAI
(15)
I
6
3
III
2
8
NA
3
NON
TYPEABLE
1
HYDERABAD
(1)
LUCKNOW
NA
LUDHIANA
(40)
-
6
-
-
23
3
-
-
11
1
-
-
-
TREATMENT OF HCV INFECTION
•
•
•
•
Poor documentation of treatment data
Few were tested for HCV RNA
Fewer were started with the treatment
From the data available significant drop in Hb,
requiring increased transfusion rate and
volume
TREATMENT OF HCV INFECTION
MUMBAI
CHENNAI
HYDERABAD
LUCKNOW
LUDHIANA
TOTAL
TREATED
6/46
10/27
1/8
3/27
40/58
% TREATED
13
37
12.5
11.1
69
SVR
2/6
NA
NA
NA
26/40
TREATMENT
Peg-Inf α
2a with
Ribavirin
Peg-Inf α 2a
+ Rib – 7/10,
Peg-Inf α 2b
+ rib -3/10
Inf α 2b
Interferon α
2a with or
without
Ribavirin
Peg-Inf α 2b
alone v/s
with
Ribavirin
RIBAVARIN
MINIMUM
mg/day
200
200 mg
alternate day
0
0
RIBAVARIN
MAXIMUM
mg/day
600
600
800
800
*Sood A et al., Indian J Gastroenterol. 2010 Mar;29(2):62-5
Chelation Status
S. Ferritin
ng/mL
MUMBAI
CHENNAI
HYDERABAD
LUCKNOW
LUDHIANA
Minimum
283
935
2898
900
NA
Maximum
7500
71671
6000
8000
NA
Mean
4078
6201
5489
3017
NA
Median
4147
2216
5578
2560
NA
CHELATORS
DESFERAL
KELFER
DESIROX
ASUNRA
SC with syringe
driver over 8 –
10 hours
Oral
Oral
Oral
Cost / month in 15000
Rupees
3000
4000
9000
Manufacturer
Novartis
Cipla
Cipla
Novartis
Advantage
Removes iron
from other
parts of body
Removes iron
from heart
Water soluble,
iron excretes
through faeces
Water soluble,
iron excretes
through faeces
Disadvantage
Painful SC with
syringe driver
Joint pains,
neutropenia
Not known
Not known
Mode of
Administration
In Mumbai
• Earlier patients receiving transfusions in public hospitals in
the city eg. St. George, KEM, Wadia, Sion Hospital
• However most of these were unmonitored where patients
went to the blood banks and receive transfusion
• THINK Foundation set up 12 day care centre in Mumbai to
facilitate transfusions, close to the residence and under
medical supervision, with regular yearly screening for
infections, monitoring chelation, growth etc
• THINK Foundation - advocacy for NAT testing of blood
which has been implemented in some Centres
Summarising…
Thalassemia major and HCV infection
•
•
•
•
•
Overall reduction in HCV prevalence compared to a decade back
However, continuing infection despite mandatory testing
Higher incidence in North India compared to the rest of the country
Small proportion of patients receive treatment
SVR is better achieved with combination therapy of Pegylated
Interferon with Ribavarin v/s Pegylated Interferon alone
• Most patients are not adequately chelated;
• Effect of chelation on treatment response needs to be studied
• Need for overall focused care of thalassemic children including
growth, iron overload related heart problems, infections and
psychological problems