Lok Sabha Question No. 2242 (UNSTARRED), answered on 2017-07-28
Subject: Thalassemia Patients
Ministry: HEALTH AND FAMILY WELFARE
Asked by: K. KAMARAAJ, Adhikari Dibyendu

## GOVERNMENT OF INDIA MINISTRY OF HEALTH AND FAMILY WELFARE DEPARTMENT OF HEALTH AND FAMILY WELFARE

## LOK SABHA UNSTARRED QUESTION NO. 2242 TO BE ANSWERED ON 28 TH JULY, 2017

## THALASSEMIA PATIENTS

## 2242. DR. K. KAMARAJ: SHRI DIBYENDU ADHIKARI:

Will the Minister of HEALTH AND FAMILY WELFARE be pleased to state:

- (a) whether the Government is planning for a National policy on thalassemia;
- (b) if so, the total number of patients suffering from thalassemia in the country;
- (c) whether it is also a fact that due to lack of access to treatment and the costs, a large number of people die across the country;
- (d)  if  so,  the  details  of  services  in  the hospitals  and  allocation  of  funds  by  the Government towards gene therapy process therein; and
- (e)  whether  the  Government  proposes to  declare  the  patients  of  thalassemia  as physically handicapped  to  give  them  access to  various  facilities  like  concession  in  rail/ bus  fare  etc. available to physically handicapped persons and if so, the details th ereof?

## ANSWER THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (SMT. ANUPRIYA PATEL )

- (a): Public Health is a state subject. Under the National Health Mission (NHM), the Mini has prepared and issued comprehensive guideline for Haemoglobinopathies (Thalassemia, Sickle cell anemia and other variant anaemia) for prevention and management of Haemoglobinopathie
- (b) & (c): The exact number of patients is not known.  The estimated number of patients the country is 100000 with ad dition of approximately 1000 new cases every year.  Data availabl on population screening by National Institute of Immunohaematology, Mumbai under Jai Vigy Project  is annexed.  No  published statistics  regarding  the  annual deaths  due  to  thalassemia  is available .
- (d): Public health and hospitals is a State subject. Government has not allocated any funds separately for gene therapy process.
- (e): The Central Government has enacted the Rights of Persons with Disabilities Act, 2016 which came into force from 19.4.2017.  Thalassemia has been included as a specified disa under  the  said  Act.    The  Act  provides  for  various  rights  and  entitlements  for  person disabilities  such  as  equ ality  and  non - discrimination,  protection  from  cruelty  and  inhuman treatment, reproductive rights, access to justice etc. Further the Act mandates the ap Government to frame schemes and programmes to promote social security, health, rehabilita and recreation of persons with disabilities.

Table 2. Prevalence of β - thalassemia trait reported in large studies

| Region                                                    | Number of Individuals screened   | Target groups                                                | Technology used                  | Prevalence of β -thal trait (range)   |   Reference |
|-----------------------------------------------------------|----------------------------------|--------------------------------------------------------------|----------------------------------|---------------------------------------|-------------|
| Mumbai and Delhi                                          | 11,090                           | Secondary school students                                    | CBC, Hb electrophoresis          | 4.05% (2.68 - 5.47%)                  |           2 |
| All Districts of Maharashtra                              | 10,647                           | School and college students, pregnant women                  | CBC, HPLC                        | 2.7% (1.0 - 6.0%)                     |          16 |
| All Districts of Gujarat                                  | 8004                             | School and college students, pregnant women                  | CBC, HPLC                        | 3.5% (0- 9.5%)                        |          16 |
| Bangalore, Kolkata, Ludhiana, Dibrugarh, Vadodara, Mumbai | 56,780                           | College students, pregnant women                             | CBC, HPLC                        | 2.78% (0.48 - 3.96%)                  |           5 |
| Districts of Gujarat                                      | 317,539                          | Tribal and non -tribal communities                           | CBC, HPLC                        | 1.95% (1.74 - 2.18%)                  |          17 |
| South Gujarat                                             | 32,857                           | School and college students, community members               | CBC and Hb electrophoresis, HPLC | 4.4% (2.7 - 4.7)                      |          18 |
| Districts of Rural West Bengal                            | 35,413                           | School and college students, married couples, pregnant women | CBC, HPLC                        | 10.38% (8.96 - 11.21%)                |          19 |

CBC, complete blood count, Hb, hemoglobin; HPLC, high performance liquid chromatography.

Table 3. Case and tribal communities with a high prevalence of β -thalassemia carriers.

| Group                 | Region                      | Prevalence of β - thalassemia carriers   | Reference   |
|-----------------------|-----------------------------|------------------------------------------|-------------|
| Caste populations     |                             |                                          |             |
| Sub castes of Sindhis | Nagpur, Maharashtra         | 8.0 - 17.0%                              | 20          |
| Bhatias               | Mumbai, Maharashtra         | 5.9%                                     | 2           |
| Khatri                | Mumbai, Maharashtra         | 6.9%                                     | 2           |
| Lohana                | Mumbai, Maharashtra         | 5.6%                                     | 2           |
| Brahmin               | Delhi                       | 5.3%                                     | 2           |
| Jath                  | Delhi                       | 6.9%                                     | 2           |
| Kayastha              | Delhi                       | 5.3%                                     | 2           |
| Kachhia Patels        | Surat, Gujarat              | 6.0%                                     | 21          |
| Modh Banias           | Surat, Gujarat              | 6.2%                                     | 21          |
| Muslim Fakirs         | Surat, Gujarat              | 5.6%                                     | 21          |
| Muslim Memons         | Surat, Gujarat              | 7.2                                      | 21          |
| Prajapati             | Surat, South Gujarat        | 6.2                                      | 18          |
| Ganchi                | Surat, South Gujarat        | 6.2                                      | 18          |
| Mayavanshi            | Surat, South Gujarat        | 6.9                                      | 18          |
| Lohana                | Surat, South Gujarat        | 10.8                                     | 18          |
| Sindhi                | Surat, South Gujarat        | 10.2                                     | 18          |
| Rajput                | Bangalore, Karnataka        | 6.3                                      | 5           |
| Jain                  | Bangalore, Karnataka        | 9.6                                      | 5           |
| Muslim Shiya          | Bangalore, Karnataka        | 6.3                                      | 5           |
| Mondal                | Kolkata, West Bengal        | 8.6                                      | 5           |
| Brahmin               | Dibrugarh, Assam            | 6.0                                      | 5           |
| Arora                 | Ludhiana, Punjab            | 9.8                                      | 5           |
| Vellala               | Mumbai, Maharashtra         | 10.5                                     | 5           |
| Lohana                | Vadodara, Gujarat           | 7.4                                      | 5           |
| Bhanushali            | Gujarat                     | 8.1                                      | 17          |
| Bhakta                | Gujarat                     | 7.9                                      | 17          |
| Lohana                | Gujarat                     | 6.5                                      | 17          |
| Tribal populations    |                             |                                          |             |
| Chaudhry              | Surat, South Gujarat        | 12.6                                     | 18          |
| Gamit                 | Surat, South Gujarat        | 15.9                                     | 18          |
| Rohit                 | Surat, South Gujarat        | 6.3                                      | 18          |
| Vasava                | Surat, South Gujarat        | 13.6                                     | 18          |
| Kokana                | Surat, South Gujarat        | 14.7                                     | 18          |
| Bhuyan                | Sundargarh district,        | Orissa 6.5                               | 22          |
| Paik                  | Sundargarh district, Orissa | 7.8                                      | 22          |
| Paraja                | Sundarharhdistrict, Orissa  | 12.7                                     | 22          |
| Dudh Kharia           | Sundarharh district, Orissa | 8.1                                      | 22          |

## The following data from Maharashtra and Gujarat compiled by NIIH

Table  1. Prevalence  of  β  thalassemia  carriers  and  expected  annual  births  of  β  thalassemia  major  babies  in  the districts of Maharashtra

| District          | Population (millions)   | Crude birth rate   | Total annual births   | Number tested   | Prevalence of heterozygotes no (%)   | Marriages at risk per 1000 marriages   | Expected annual births of homzygotes   |
|-------------------|-------------------------|--------------------|-----------------------|-----------------|--------------------------------------|----------------------------------------|----------------------------------------|
| Konkan Division   |                         |                    |                       |                 |                                      |                                        |                                        |
| Mumbai city       | 3.34                    | 14.6               | 48 735                | 547             | 22 (4.0)                             | 1.6                                    | 86.8                                   |
| Mumbai suburbs    | 8.64                    | 18.2               | 1 57 255              |                 |                                      |                                        |                                        |
| Raigarh           | 2.21                    | 21.8               | 48 132                | 578             | 30 (5.2)                             | 2.7                                    | 34.2                                   |
| Thane             | 8.13                    | 23.4               | 1 90 285              | 233             | 11 (4.7)                             | 2.2                                    | 111.3                                  |
| Ratnagiri         | 1.70                    | 20.5               | 34 783                | 1696            | 35 (2.1)                             | 2.1                                    | 3.8                                    |
| Sindhudurg        | 0.87                    | 17.4               | 15 117                | 1070            | 11 (1.0)                             | 0.1                                    | 0.4                                    |
| Aurangabad        |                         |                    |                       |                 |                                      |                                        |                                        |
| Division          |                         |                    |                       |                 |                                      |                                        |                                        |
| Aurangabad        | 2.90                    | 24.1               | 69 818                | 168             | 4 (2.4)                              | 0.6                                    | 10.1                                   |
| Bid               | 2.16                    | 23.5               | 50 789                | 225             | 11 (4.9)                             | 2.4                                    | 31.9                                   |
| Jalma             | 1.61                    | 24.6               | 39 679                | 77              | 1 (1.3)                              | 0.2                                    | 1.7                                    |
| Latur             | 2.08                    | 24.1               | 50 134                | 112             | 3 (2.7)                              | 0.7                                    | 9.2                                    |
| Nanded            | 2.88                    | 25.5               | 73 344                | 101             | 2 (2.0)                              | 0.4                                    | 7.3                                    |
| Osmanabad         | 1.49                    | 23.2               | 34 488                | 86              | 1 (1.2)                              | 0.1                                    | 1.2                                    |
| Parbhani          | 1.53                    | 25.2               | 38 498                | 38              | 1 (2.6)                              | 0.7                                    | 11.4                                   |
| Hingoli           | 0.99                    | 26.1               | 25 764                |                 |                                      |                                        |                                        |
| Nashik Division   |                         |                    |                       |                 |                                      |                                        |                                        |
| Ahmednagar        | 4.04                    | 21.8               | 88 085                | 503             | 30 (6.0)                             | 3.6                                    | 83.4                                   |
| Dhule             | 1.71                    | 22.5               | 38 429                | 128             | 5 (3.9)                              | 1.5                                    | 29.3                                   |
| Nandurbar         | 1.31                    | 27.0               | 35 416                |                 |                                      |                                        |                                        |
| Jalgaon           | 3.68                    | 21.7               | 79 914                | 173             | 3 (1.7)                              | 0.3                                    | 6.1                                    |
| Nashik            | 4.99                    | 25.0               | 1 24 844              | 316             | 13 (4.1)                             | 1.7                                    | 55.1                                   |
| Pune Division     |                         |                    |                       |                 |                                      |                                        |                                        |
| Kolkapur          | 3.52                    | 19.3               | 67 997                | 452             | 11 (2.4)                             | 0.6                                    | 10.3                                   |
| Sholapur          | 3.85                    | 22.2               | 85 459                | 400             | 7 (1.8)                              | 0.3                                    | 6.7                                    |
| Pune              | 7.23                    | 20.6               | 1 48 990              | 807             | 11 (1.4)                             | 0.2                                    | 7.0                                    |
| Sangli            | 2.58                    | 19.4               | 50 120                | 310             | 7 (2.3)                              | 0.5                                    | 6.5                                    |
| Satara            | 2.81                    | 19.2               | 53 932                | 823             | 36 (4.4)                             | 1.9                                    | 27.0                                   |
| Nagpur Division   |                         |                    |                       |                 |                                      |                                        |                                        |
| Chandrapur        | 2.07                    | 20.9               | 43 286                | 489             | 14 (2.9)                             | 0.8                                    | 9.1                                    |
| Gadchiroli        | 0.97                    | 25.8               | 25 033                | 360             | 4 (1.1)                              | 0.12                                   | 0.8                                    |
| Bhandara          | 1.14                    | 20.7               | 23 518                | 157             | 3 (1.9)                              | 0.36                                   | 14.5                                   |
| Gondiya           | 1.20                    | 21.8               | 26 175                |                 |                                      |                                        |                                        |
| Nagpur            | 4.07                    | 20.2               | 82 166                |                 |                                      |                                        |                                        |
| Wardha            | 1.24                    | 19.2               | 23 745                |                 |                                      |                                        |                                        |
| Amravati Division |                         |                    |                       |                 |                                      |                                        |                                        |
| Akola             | 1.63                    | 22.3               | 36 354                | 132             | 2 (1.5)                              | 0.2                                    | 3.6                                    |
| Washim            | 1.02                    | 24.3               | 24 791                |                 |                                      |                                        |                                        |
| Amravati          | 2.61                    | 21.2               | 55 271                | 54              | 1 (1.9)                              | 0.4                                    | 4.8                                    |
| Buldana           | 2.23                    | 23.5               | 52 463                | 72              | 2 (2.8)                              | 0.8                                    | 10.4                                   |
| Yavatmal          | 2.46                    | 23.7               | 58 261                | 540             | 9 (1.7)                              | 1.8                                    | 4.1                                    |
| Total             | 96.9                    |                    |                       | 10647           | 290 (2.7)                            |                                        | 588                                    |

Table II. Prevalence of β -thalassemia and e2xpected annual births of β - thalassemia major babies in the districts of Gujarat.

| District        | Population (millions)   | Crude birth rate   | Total annual births   | Number tested   | Prevalence of heterozygotes no (%)   | Marriages at risk per 1000 marriages   | Expected annual births of homzygotes   |
|-----------------|-------------------------|--------------------|-----------------------|-----------------|--------------------------------------|----------------------------------------|----------------------------------------|
| South Gujarat   |                         |                    |                       |                 |                                      |                                        |                                        |
| Valsad          | 1.41                    | 22.7               | 32019                 | 200             | 7 (3.5)                              | 1.2                                    | 10.2                                   |
| Dang            | 0.19                    | 32.8               | 6124                  | 141             | 4 (2.8)                              | 0.8                                    | 1.3                                    |
| Navsari         | 1.23                    | 17.9               | 22007                 | 137             | 3 (2.2)                              | 0.5                                    | 2.7                                    |
| Surat           | 5.0                     | 23.2               | 115888                | 552             | 12 (2.2)                             | 0.5                                    | 14.0                                   |
| Central Gujarat |                         |                    |                       |                 |                                      |                                        |                                        |
| Bharuch         | 1.37                    | 22.3               | 30565                 | 432             | 9 (2.1)                              | 0.4                                    | 3.4                                    |
| Narmada         | 0.51                    | 24.6               | 12654                 | 41              | 0                                    | 0                                      | 0                                      |
| Anand           | 1.86                    | 21.7               | 40294                 | 300             | 10 (3.3)                             | 1.4                                    | 11.8                                   |
| Ahmedabad       | 5.82                    | 20.5               | 119238                | 504             | 18 (3.6)                             | 1.3                                    | 39.4                                   |
| Vadodara        | 3.64                    | 21.3               | 77570                 | 2194            | 67 (3.1)                             | 1                                      | 18.7                                   |
| Kheda           | 2.02                    | 23.1               | 46759                 | 353             | 13 (3.7)                             | 1.4                                    | 16.5                                   |
| Gandhinagar     | 1.33                    | 22.1               | 29491                 | 51              | 1 (2.0)                              | 0.1                                    | 2.9                                    |
| Panchmahal      | 2.03                    | 27.7               | 56100                 | 258             | 10 (3.9)                             | 1.5                                    | 21.9                                   |
| Dahod           | 1.64                    | 34.2               | 55966                 | 119             | 4 (3.7)                              | 1.4                                    | 16.4                                   |
| Saurashtra      |                         |                    |                       |                 |                                      |                                        |                                        |
| Porbandar       | 0.54                    | 21.8               | 11703                 | 105             | 10 (9.5)                             | 9.0                                    | 29.4                                   |
| Jamnagar        | 1.82                    | 21.7               | 39047                 | 185             | 6 (3.3)                              | 1.1                                    | 10.7                                   |
| Rajkot          | 2.57                    | 16.9               | 43433                 | 309             | 16 (5.2)                             | 2.7                                    | 30.7                                   |
| Surendranagar   | 1.52                    | 27.6               | 41818                 | 92              | 5 (5.4)                              | 2.9                                    | 32.7                                   |
| Amreli          | 1.39                    | 21.1               | 29411                 | 144             | 9 (6.3)                              | 4.0                                    | 30.7                                   |
| Bhavnagar       | 2.47                    | 25.3               | 62481                 | 379             | 17 (4.5)                             | 2.0                                    | 32.9                                   |
| Junaghad        | 2.45                    | 23.1               | 56553                 | 304             | 25 (8.2)                             | 6.7                                    | 104.4                                  |
| Kuchchh         | 1.58                    | 25.4               | 40214                 | 603             | 27 (4.5)                             | 2.0                                    | 21.1                                   |
| North Gujarat   |                         |                    |                       |                 |                                      |                                        |                                        |
| Putan           | 1.18                    | 26.1               | 30869                 | 74              | 2 (2.7)                              | 0.7                                    | 5.8                                    |
| Banaskantha     | 2.50                    | 31.3               | 78383                 | 74              | 0                                    | 0                                      | 0                                      |
| Mehsana         | 1.84                    | 22.4               | 41169                 | 307             | 4 (1.3)                              | 0.2                                    | 1.8                                    |
| Sabarkantha     | 2.08                    | 25.1               | 52271                 | 146             | 1 (0.7)                              | 0                                      | 0.6                                    |
| Total           | 49.9                    |                    |                       | 8004            | 280 (3.5)                            |                                        | 460                                    |