Punjab Thalassaemia Prevention Programme (PTPP) Progress Report

Punjab Thalassaemia Prevention Programme (PTPP) Progress Report (Year 2012)

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Punjab Thalassaemia Prevention Programme

(PTPP)

Progress Report

Year 2012


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Our Message

Our Mission

Thalassaemia free Pakistan


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Acknowledgments

We would like to extend our profound gratitude to all those who supported us in many folds:

• The Chief Minister, Government of Punjab

• The Secretary Health, Government of Punjab

• The Add. Secretary (Development)Health, Government of Punjab

• The Chief Planning Officer (Health)

• The Deputy Secretary (Health) Finance Department

• The Planning Officers (Health)

• The Procurement Officer (Health)

• Prof. Dr. Yasmin Raashid

• Prof. Dr. Rakshanda Rehman

• Dr. Yasmeen Ehsan (Jinnah Hospital ,Lahore)

• Dr. Waleed Bin Azhar

• Dr. Abdul Qadeer Khan

• Mr. Hussain Jafari

• General Dr. Sohaib Ahmed, Gen Farooq Ahmad, Brig. Dr. Nadir (AFIP, Rawalpindi)

• Dr. Ijaz Ahmad Sheikh & all management of Sir Ganga Ram Hospital, Lahore

• All EDOs, MSs & officials of DHQs (Sheikhupura,Gujranawala,Faisalabad,Toba T

Singh,Kasur,MultanVehari,Khanewal,Lodhran,Bahawalnagar,Muzaffargarh,Jhelum,Attock)

• Dr. Nisar Ahmad & Dr. Javaria (Children Hospital, Lahore)

• Dr. Shahid Mehmood Baig & his team (NIBGE), Faisalabad

• Dr. Durre- Sabih & his team (MINAR),Multan

• Mr. Hamid Medmood (RIFAH Welfare Foundation) Sheikupura

• Dr. Farhana & her team (Fatimid Foundation Lahore)

• Sundas Foundation

• Mr. Syed Shahid Ali Zaidi (Ali Zaib Foundation) Faisalabad

All PTPP team and anyone else whom we forgot to mention here


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List of Acronymous

PTPP Punjab Thalassaemia Prevention Programme

PD Project Director

PC Project Coordinator

FMO Field Monitoring Officer

FO Field Officer

PIMU Programme Implementation & Monitoring Unit

SGRH Sir Ganga Ram Hospital

FJMC Fatima Jinnah Medical College

HCP Health Care Professional

HPLC High Performance Liquid Chromatography

CVS Chorionic Villus Sampling

CBC Complete Blood Count

Hb Haemoglobin

USA University of South Asia


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Table of Contents

1. Executive Summary …………………………………………………………………………..06-07

2. Introduction ……………………………………………………………………………………08-11

3. Activities conducted during Year 2012 …………………………………………………….11-22

3.1. Project Review Meeting ………………………………………………………………12-12

3.2. Technical Advisory Committee Meeting …………………………………………..13-13

3.3. Recruitment of new staff ……………………………………………………………..14-15

3.4. Establishment of DNA and Haematology Labs …………………………………..16-17

3.5. Training workshops for Field Officers ……………………………………………….18-18

3.6. Training workshop on CVS …………………………………………………………..19-20

3.7. Monitoring visits and establishment of PTPP offices ……………………………...21-21

3.8. Planning meetings …………………………………………………………………….22-22

3.9. Training Workshops in Lahore and Multan ………………………………………...22-23

4. Awareness Seminars …………………………………………………………………………23-24

5. Awareness material …………………………………………………………………………...24-24

6. Pre-marital screening …………………………………………………………………………25-28

7. Weekly and Monthly Progress Reports ……………………………………………………29-29

8. Blood Sampling and Thalassaemia Carrier Testing Reports ………………………….30-33

9. CVS Report …………………………………………………………………………………….33-36

10. Conclusion …………………………………………………………………………………….37-37

11. References …………………………………………………………………………………….38-39

12. Contact us ……………………………………………………………………………………...40-40


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1. Executive Summary

Year 2012 remained quite busy for Punjab Thalassaemia Prevention Programme (PTPP). Many

activities were performed but following were the major ones;

• Project review and technical advisory committee meetings were held at Fatima Jinnah

Medical College (FJMC) Lahore.

• Four regional centres at Sir Ganga Ram Hospital Lahore (head office of PTPP), Holy

Family Hospital Rawalpindi, Children Hospital Multan and Victoria Hospital Bahawalpur

have been established.

• The recruitment process of new staff for 12 Districts of Punjab (Sheikhupura, Kasur,

Gujranwala, Faisalabad, Vehari, Khanewal, Lodhran, Muzaffargarh, Bahwalnagar, Jhelum,

Attock & Toba Tek Singh) has been completed.

• The procurement of equipments and establishment of DNA and Haematology Labs at

PTPP head office.

• Five training workshop were arranged for the newly recruited Field Officers (FO’s).

• For the establishment of PTPP new offices at DHQ levels, the monitoring team of PTPP

head office has visited all project sites and meetings were arranged with the EDO’s and

MS’s of aforementioned districts.

• Several planning meetings were held at PTPP head office, wherein heads of wings has

presented their work strategy for the year 2012-13.

• On Genetic Counselling and Pedigree drawing skills, two training workshops were arranged

in Lahore and Multan respectively.

• For Gynecologists a workshop was arranged on Chorionic Villous Sampling (CVS).

• PC1 of the project has been revised and submitted to the Secretary Health for approval.

• PTPP started conducting Hb Electrophoresis Tests to determine the Carrier status of

Thalassaemic families. 6137 persons of 355 Thalassaemic families have been screened.

• 30 CVS tests have been performed.


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• From July 2012 to February 2013, Field officers of PTPP have organized:

o 602 awareness events

o 3987 Thalassaemic children registered

o Genetic counseling was provided to 973 Thalassaemic families

o 808 outreach visits conducted

o 774 Thalassaemia families were identified for screening

o 259 linkages were developed with other stakeholders

• PTPP has also started offering Pre-marital Thalassaemia carrier testing services to the

general public and 74 persons has been screened so far.

• Six major awareness seminars were arranged at: University of South Asia Lahore, Punjab

Group of Colleges Sheikupura, Children Hospital Multan, Govt. S.E College Bahawalpur,

Govt. Degree College Lodhran and DHQ Hospital Muzaffargarh.

• Twenty- Four (24) awareness programmes were conducted on electronic media (FM-100).

• A rigorous awareness campaign has been launched in Punjab through print media.

• Regular data collection and research studies have been started.

• The programme has been initiated in 16 districts of Punjab. The PTPP has been able to

establish an effective and coordinated network (PTPP+DHQs+NGOs+Community) of

Thalassaemia prevention services across Punjab.


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2. Introduction

Thalassaemia is an inherited blood disorder and can be simply stated as the inability of the body

to produce adequate amount of Haemoglobin in the red blood cells. Haemoglobin is the protein in

red blood cells that carries oxygen. People with Thalassaemia make less hemoglobin and fewer

circulating red blood cells than normal, which results in severe anemia. Thalassaemia can cause

significant complications, including iron overload, bone deformities, endocrine problems, Liver

Cirrhosis and cardiovascular illness.

α and β-Thalassaemia are two major types of Thalassaemia. Beta form of Thalassaemia is the

most prevalent genetically transmitted blood disorder in Pakistan with a carrier rate of 5-8%.This

translates that with the population of over 180 Million, there are over 10 Million Thalassaemia

carriers in Pakistan. And more than 5000 children are diagnosed with Thalassaemia Major every

year. Children suffering from this blood disorder require blood transfusion every month of their

lives; in addition they require regular Iron Chelation therapy to remove excess iron, which results

from multiple transfusions.

In Pakistan blood is in short supply and blood banking facilities are primitive although developing

gradually. Due to social and economical reasons patients are generally not able to maintain an

ideal Hb level of 9-10.5 g/dl. Therefore mostly Thalassaemic children are under transfused as per

international standards and their pre-transfusion Hb is around 6-7 gm/dl and this problem is

magnified with irregular provision/complete unavailability of Iron Chelation therapy to majority of

Thalassaemic children. So, in Pakistan, overall life expectancy of Thalassaemic children is 10 to

12 years, while in developed world it is upto 48-55 years.

What is a Thalassaemia Carrier/Minor? The person who inherits one abnormal gene from his/her parents is called Thalassaemia

Carrier/Minor. Thalassaemia Carriers are completely healthy and may not know they are carriers

unless they have a special blood test carried out. An individual carrier who plans a family with a

non carrier will not risk their child inheriting the disorder. The child however has a 50% chance of

becoming a carrier.

http://en.wikipedia.org/wiki/Anemia�


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However, there is 25% likelihood that a child born to parents who are both Thalassaemia carriers

will inherit Thalassaemia major. In Pakistan over 80% marriages usually takes place in same

family/cousin marriages. Due to consanguineous marriages, Thalassaemia gene has been widely

disseminated in the general population. Thus making Thalassaemia a significant public health

issue in Pakistan.

Thalassaemia Prevention Programms in the world Preventive genetic services based on population screening are now an integral part of maternal

and child health programmes in many parts of the world. In many countries, the incidence of

Thalassaemia has been decreased significantly after the introduction of screening programmes.

The voluntary carrier screening programme, which began in Sardinia, Italy, in 1975, reduced the

incidence of b-Thalassaemia from 1:250 to 1:4000 in 1995. The entire carrier couples originally

identified as carriers in a high school screening programme in Montreal, Canada, chose prenatal

diagnosis later on. Therefore, because of this carrier screening programme, no one screened has

given birth to an affected child, which has caused a 95% decrease in the incidence of b-

Thalassaemia in that region. Similar results were seen in Marseille, France, where 86% of

partners of carriers identified many years earlier in a high school screening programme were

carrier tested and all carrier couples requested prenatal diagnosis later on.

A premarital screening programme began in Cyprus in 1973 has reduced affected births from 51

in 1974 to 8 in 1979. The incidence continued to decrease after the screening programme further

developed into a mandatory screening programme in the early 1980s, with only five affected births

occurring between 1991 and 2001 and no affected births occurring between 2002 and 2007.

Before carrier screening began in Cyprus, difficulties were experienced in obtaining enough blood

supply for the treatment of all affected individuals and this would have become a larger problem, if

the incidence continued to rise.

An antenatal Thalassaemia screening programme in Taiwan resulted in a significant reduction in

the incidence of b-Thalassaemia. Before the programme, about 20 children with Thalassaemia

were born every year. Seven years later, the incidence had decreased to only three to six affected

children being born every year. Another antenatal screening programme has been conducted in


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Guangdong, China, for 11 years. Over 95% of the carrier couples identified underwent prenatal

diagnosis and only one child with b-Thalassaemia has been born, because of a misdiagnosis

during prenatal diagnosis.

In Cyprus, Greece and Italy, premarital screening for Thalassaemia has been normal practice for

a long time because consanguinity is high. Similar preventive programmes have been introduced

in Bahrain, China, India, the Islamic Republic of Iran, Indonesia, Malaysia, the Maldives,

Singapore, Thailand, Saudi Arabia and United Arab Emirates. In the UK, Northern Ireland and

other northwest European countries, prenatal diagnosis is available and abortion is a prevention

strategy.

Punjab Thalassaemia Prevention Programme (PTPP) The current socio-economic condition of the country reveals that Pakistan cannot adequately treat

all of its Thalassaemics. So, considering the gravity of the issue Govt. of Punjab has initiated

Thalassaemia Prevention Programme, which has been implemented in following 16 districts of

Punjab.

• Sir Ganga Ram Hospital, Lahore (Head Office)

• Holy Family Hospital, Rawalpindi (Regional centre)

• Children Hospital, Multan (Regional centre)

• Victoria Hospital, Bahawalpur (Regional centre)

• Sheikhupura, Kasur, Gujranwala, Faisalabad, Multan,Vehari, Khanewal, Lodhran,

Muzaffargarh, Bahwalnagar, Jhelum & Toba Tek Singh DHQ Hospitals.

The PTPP is working with following objectives:

• To reduce the birth of new B-Thalassaemia major patients.

• To reduce the burden on blood transfusion services and blood donors.

• To reduce the burden of blood transmitted diseases like Hepatitis B, Hepatitis C and HIV/AIDS.

• To reduce the Infant Mortality Rate (IMR) under one year in undiagnosed population thus taking us closer to our Millennium Development Goals (MDG).


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• To reduce the socio-economic burden on the society and state caused due to Thalassaemia sufferers.

• To reduce the burden of very sick patients on the infrastructure and human resource available in hospitals.

• To reduce the heart rendering ordeal of parents and relatives who lose their children to this disease.

These objectives will be achieved through following work strategy:

1. Thalassaemia awareness

2. Screening of carriers

3. Genetic Counselling

4. Pre-natal Diagnosis

5. Pre-marital screening

3. Activities of Punjab Thalassaemia Prevention Programme

Following were the major activities of PTPP in year 2012:

3.1 Project Review Meeting

3.2 Technical Advisory Committee Meeting

3.3 Recruitment of New Staff

3.4 Establishment of DNA and Haematology Labs

3.5 Training Workshops for Field Officers

3.6 Training Workshops on CVS

3.7 Monitoring visits and establishment of PTPP offices

3.8 Planning Meetings

3.9 Training Workshops in Lahore and Multan


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3.1 Project Review Meeting To discuss the project progress and determine the future actions, a meeting was held at FJMC on

14thFebruary 2012. The participants of this meeting were:

Figure 1: Project review meeting at FJMC

Project Review Meeting

Sr. # Name of the Participants Designation

1 Prof. Dr. Yasmin Raashid Chief Guest

2 Prof. Dr. Rukhshanda Rehman Principal FJMC

3 Prof. Dr. Shamsa Humayun Project Director PTPP

4 Prof. Dr. Tabinda Rana Ex. Project Director PTPP

5 Dr. Yasmin Ehsan APWMO, Jinnah Hospital, Lahore

6 Dr. Muhammad Ijaz Sheikh Medical Superintendent, SGRH

7 Prof. Dr. Syed Sajid Hussain Quaid –e- Azam Medical College

8 Dr. Sadia Afzal Senior Registrar SGRH

9 Lt Col (R) Shafi Ullah Regional Coordinator Rawalpindi

10 Dr. Fazal Malik Regional Coordinator Bahawalpur

11 Malik Irfan Field Monitoring Officer Multan

12 Zaheer Ahmad Field Monitoring Officer Lahore

13 Imtiaz Ahmad Field Monitoring Officer Lahore

14 Dr. Shahid Hafeez Field Monitoring Officer Lahore

15 Aftab Alam Accounts officer Lahore

16 Naveed Faroqi Computer Operator Lahore


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3.2 Technical Advisory Committee Meeting To discuss about the best available machine for early detection and characterization of the

Haemoglobinopathies, a meeting was held at FJMC on 12th May 2012. The participants of this

meeting were:

Technical Advisory Committee Meeting Sr. # Name Designation

1 Prof. Dr. Rakhshanda Rehman Principal FJMC

2 Prof. Dr. Yasmin Rashid Ex. Project Director PTTP 3 Prof. Dr. Shamsa Humayun Project Director PTPP 4 Dr. Nisar Ahmad Hematologist Children Hospital Lahore 5 Gen. Dr. Sohaib Ahmad Hematologist AFIP Rawalpindi 6 Dr. Tazeen Hematologist FJMC 7 Dr. Yasmin Ehsan APWMO SGRH

8 Shahid Hafeez Field Monitoring Officer, PTPP

9 Zaheer Ahmad Field Monitoring Officer, PTPP

10 Imtiaz Ahmad Field Monitoring Officer, PTPP

Figure 2: Technical advisory committee meeting at FJMC


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3.3 Recruitment of New Staff In June 2012 PTPP has recruited new staff for 12 Districts of Punjab and the vacant posts of

PTPP head office. Following are the details of new staff (Table 1):

Table 1: New Staff of PTPP

Sr. No Name Position Location 1 M. Navid Tahir Project Coordinator Lahore 2 Shahid Hafeez Regional Coordinator Multan 3 Sadia Afzal Senior Molecular Biologist Lahore 4 Shumaila Younis Molecular Biologist Lahore

5 Jamil Akhtar Lab Technician Lahore

6 Aziz-ur-Rehman Lab Technician Rawalpindi

7 M. Sharif Lab Technician Multan

8 Sajid Ali Lab Technician Bahawalpur

9 Yasir Maqbool Field Monitoring Officer Rawalpindi

10 Waris Ali Waris Field Officer Sheikhupura

11 Asif Iqbal Field Officer Sheikhupura

12 Sajid Ali Field Officer Gujranawala

13 Rana Nasir Ali Field Officer Gujranawala

14 M. Faruq Abdullah Field Officer Kasur

15 M.Furrukh Shahzad Field Officer Kasur

16 M. Bakhash Field Officer Faisalabad

17 Allah Rakha Field Officer Faisalabad

18 Naeem-ul-Hassan Field Officer Vehari


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19 Allah Ditta Field Officer Vehari

20 Naveed Hussain Field Officer Khanewal

21 M. Abid Munir Field Officer Khanewal

22 Sajid Hussain Field Officer Lodhran

23 Hafiz M . Shafique Field Officer Lodhran

24 Waseem Abdeen Field Officer Bahawalnagar

25 Muhammad Amjad Field Officer Bahawalnagar

26 Mohammad Akbar Field Officer Muzaffargarh

27 Zafar Tahir Field Officer Muzaffargarh

28 Muhammad Sohaib Field Officer Toba Tek Singh

29 Muhammad Faisal Field Officer Toba Tek Singh

30 Salah-Ud-Din Field Officer Jhelum

31 Sajid Mehmood Field Officer Jhelum

32 Shahid Ali Field Officer Attock

33 Rais Iqbal Field Officer Attock

34 Mohammad Zaman Driver Multan 35 M. Azam Peon Multan 36 GhulamMujtaba Peon Bahawalpur 37 AslamChanna Sweeper Lahore

38 M.Ahmed Sweeper Rawalpindi


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3.4 Establishment of DNA and Haematology Labs PTPP has established a DNA Lab at PTPP head office in SGRH, Lahore. The DNA Lab will

provide the following services for Thalassaemics:

• Mutation analysis for Pre-natal diagnosis

• Chorionic Villous Sampling (CVS) for pre-natal diagnosis

• DNA Extraction from parental blood samples

• DNA Extraction from CVS sample (fetal)

• Mutation detection by PCR and PAGE

The DNA Lab was officially inaugurated (Figure 3) by Mr. Syed Yawar Ali (Chairman Board of

management FJMC/SGRH Lahore) on 8th June 2012.

Figure 3: Inauguration of DNA Lab at Sir Ganga Ram Hospital, Lahore

Haematology Lab has also been established at PTPP head office, which is providing following

services:

• Complete Blood Count (CBC) test

• Haemoglobin (Hb) Electrophoresis for Thalassaemic Carrier testing


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High Performance Liquid Chromatography (HPLC) Machine

PTPP is using High Performance Liquid Chromatography (HPLC) machine for detailed

Haemoglobin analysis to identify/ascertain the Thalassaemic Carriers/ Haemoglobinopathies.

HPLC is one mode of chromatography, one of the most used analytical techniques.

Chromatographic process can be defined as separation technique involving mass-transfer

between stationary and mobile phase. HPLC utilizes a liquid mobile phase to separate the

components of a mixture (Figure 4):

Figure 4: High Performance Liquid Chromatography (HPLC)

The stationary phase can be a liquid or a solid phase. These components are first dissolved in

a solvent, and then forced to flow through a chromatographic column under a high pressure. In

the column, the mixture separates into its components. The amount of resolution is important

and is dependent upon the extent of interaction between the solute components and the

stationary phase. The stationary phase is defined as the immobile packing material in the

column.

The interaction of the solute with mobile and stationary phases can be manipulated through

different choices of both solvents and stationary phases. As a result, HPLC acquires a high

degree of versatility not found in other chromatographic systems and it has the ability to easily

separate a wide variety of chemical mixtures.


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3.5 Training workshops for Field Officers For newly recruited Field Officers (FO’s) one week (12-17th June 2012) training workshop was

organized at PTPP head office. 22 FO’s from 12 Districts of Punjab has attended this training.

In the later part of the year 2012, two more workshops were arranged.


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3.6 Training Workshop on Chorionic Villus Sampling (CVS)

Pre-natal Diagnosis

Prenatal diagnosis is a procedure to diagnose genetic or chromosomal abnormalities in early

pregnancies. It is being offered to all carrier couples of Thalassaemia. This procedure is the

most important step to prevent the birth of a new Thalassaemia Major Child. The development

of techniques for diagnosing genetic disorders in-utero is a major advancement in medical

genetics and it has altered the outlook for families at risk of having affected children. This has

helped in preventing the birth of children with Thalassaemia major in countries like Cyprus,

Italy and Greece which had a prevalence rate as high as 15-17%.

Chorionic Villus Sampling (CVS)

Chorionic villus sampling (CVS) is a test carried out during pregnancy to detect specific

abnormalities in an unborn baby. A sample of cells is taken from the placenta (the organ that

links the mother’s blood supply with her unborn baby) and tested for genetic defects.

CVS is offered in pregnancies where there is a high risk of the baby, having a serious inherited

condition. This could be because:

• If you have had a previous pregnancy with fetal problems, such as a baby born with a

Genetic problem/chromosome abnormality or a mental health condition

• If you have a family history of a condition such as cystic fibrosis or muscular dystrophy

• an earlier antenatal screening test has suggested that there may be a problem, such

as sickle cell anaemia (an inherited blood disorder)

During CVS, a sample of cells called chorionic villi cells are taken from the pregnant woman’s

placenta using either:

• transabdominal CVS – a needle is inserted through the abdomen

• transcervical CVS – a tube is inserted through the cervix (the neck of the womb)

CVS is usually carried out between weeks 10 and 13 of pregnancy and is not recommended

earlier than this. The test takes about 5-10 minutes, although the whole consultation takes

about 30 minutes. The first result usually available within a few days and it is performed by a

http://www.nhs.uk/conditions/Cystic-fibrosis/Pages/Introduction.aspx�

http://www.nhs.uk/conditions/Muscular-dystrophy/Pages/Introduction.aspx�

http://www.nhs.uk/Conditions/Antenatal-screening/Pages/Introduction.aspx�

http://www.nhs.uk/conditions/Sickle-cell-anaemia/Pages/Introduction.aspx�


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specialized Obstetrician and Gynecologists’ trained in the art of CVS and ultrasonology in

interventional procedures to assist the above cadre.

To train the Gynecologists in CVS a hands on training was arranged at PTPP head office,

wherein Dr. Yasmeen Ehsan has demonstrated this procedure to all participating doctors.

Figure: CVS training at Sir Ganga Ram Hospital, Lahore


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3.7 Monitoring visits and establishment of PTPP offices

The monitoring team of PTPP head office has visited all the project sites namely:

• Children Hospital, Multan

• Victoria Hospital, Bahawalpur

• Sheikhupura, Kasur, Gujranwala, Faisalabad, Multan,Vehari, Khanewal, Lodhran,

Muzaffargarh, Bahwalnagar, Jhelum & Toba Tek Singh DHQ Hospitals.

• Holy Family Hospital, Rawalpindi

During these visits meetings were arranged with EDO’s and MS’s of the respective hospitals.

The agenda of these meetings was:

• To introduce the programme and its objectives

• To make necessary arrangement for the establishment of PTPP new offices at DHQ level

• To seek provision for conducting Complete Blood Count test at DHQ Hospitals

• To develop an effective coordination/linkages between all stakeholders

These meetings were quite successful and PTPP offices have been established at all new

settings.


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3.8 Planning Meetings In July 2012, several planning meetings were held at PTPP head office. In these meetings the

head of wings (Table 3) of PTPP has presented their work strategy with time lines for the year

2012-13. This has helped us to define the measurable goals that could lead us to achieve the

objectives of PTPP.

Name

Designation

Responsibility

Ms. Sadia Afzal Snr. Molecular Biologist Head of DNA Lab

Ms. Shumaila Younas Molecular Biologist Head of Haematology Lab Mr. Zaheer Ahmad Field Monitoring Officer Head of HR Wing/Admin Officer Mr. Aftab Alam Accounts Officer Head of Finance Wing Mr. Imtiaz Ahmad Field Monitoring Officer Head of Transportation/ R&M wing Mr. Yasar Maqbool Field Monitoring Officer Research &Coordination

3.9 Workshop on Genetic Counseling and Pedigree Skills One Genetic Counselling and pedigree drawing skills, one day training workshop was arranged in

Lahore (on 13th August 2012) and Multan (on 16th August 2012) respectively.

Workshop in Lahore Workshop in Multan


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Following themes were addressed in these workshops:

• Basics of Genetic Counselling

• Pedigree Tree drawing

• Weekly and Monthly Reporting formats

• Any other relevant topic

4. Awareness Seminars PTPP is collaborating with various educational institutes and NGOs to hold Thalassaemia

awareness seminars. Following were the major awareness events organized in last few months

at following places:

• University of South Asia (USA), Lahore

• Punjab Group of Colleges, Sheikupura

• Children Hospital, Multan

• Govt. Degree College, Bahawalpur

• Govt. Degree College, Lodhran

• DHQ Hospital, Muzaffargarh

In these awareness sessions students has actively participated and shown Great Spirit to work

towards “Thalassaemia free Pakistan”. Pre-marital screening and blood donation camps were

also arranged during these events.


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Thalassaemia awareness seminar at Children Hospital, Multan

Thalassaemia awareness seminar at Punjab Group of Colleges & USA Lahore

Thalassaemia awareness events at different places


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5. Awareness Material PTPP has developed various awareness materials/literature to sensitize the general public. An

awareness campaign has also been launched thorough print media in Punjab. We are

extremely grateful to Dr. Abdul Qadir Khan for writing an article on PTPP. All these steps

helped us to create awareness among masses.


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6. Pre-marital screening Pre-marital screening is most effective method to identify the carriers from the general

population. Thalassaemic families screening coupled with the screening of general public would

help to completely control Thalassaemia in the province.

Even in few countries like UAE, Iran and Saudi Arabia, it is mandatory to have Thalassaemia

screening before marriage (Table 1).

Table 1 Countries with known premarital screening Programmes

Country Date Started Type of Screening Source Italy Bahrain Iran Jordan Saudi Arabia United Arab Emirates Tunisia Egypt Spain Portugal Turkey Merlin Denizli Cyprus Canada Greece UK USA Illinois & Louisiana China Taiwan Brazil Palestine Malaysia Johor India Indonesia Maldives Singapore Thailand

1975 1985 1997 2004 2004 2008 2007 † † † † 1998 1995 1973 1970s 1975 1970s 1983 1992 1993 † † 2002 † † † † †

Thalassaemia* (mandatory) Thalassaemia and sickle cell disease (mandatory) Thalassaemia (mandatory) Thalassaemia (mandatory) Thalassaemia and sickle cell disease (mandatory) HIV, hepatitis B and hepatitis C (mandatory) Thalassaemia (mandatory) Thalassaemia (mandatory) Thalassaemia & STDs (voluntary) Thalassaemia & STDs (voluntary) Thalassaemia & STDs (voluntary) Thalassaemia (mandatory) Thalassaemia (mandatory ) Thalassaemia (mandatory) Thalassaemia, SCD & STDs (voluntary) Thalassaemia (mandatory) Thalassaemia, SCD & STDs (voluntary) STDs including HIV (mandatory), Inherited diseases, HBV & HIV (mandatory till 2003) Thalassaemia (Voluntary) Inherited & STDs (mandatory in some areas) Thalassaemia (mandatory) HIV (Mandatory) Inherited & STDs (voluntary) Inherited & STDs (voluntary) Inherited & STDs (voluntary) Inherited & STDs (voluntary) Inherited & STDs (voluntary)

Silvestroni et al.3

Al-Arrayed6

Samavat and Modell7

Hamamya et al.8

AlHamdan et al.9

Shalhoub10

Al-Gazali et al.11 Therese12

Therese12

Therese12

Therese12 Keskina et al.13

Keskina et al.13

Angastiniotis14

Tosun et al.5

Tosun et al.5

Tosun et al.5 CDC, MMWR15

Therese12

Chern et al.16

Therese12

Al-Gazali et al.11 Khebir et al.17

WHO Secretariat Report2






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In Pakistan, the resolution for mandatory Thalassaemia screening test has also been passed

by Punjab assembly on 27th December 2012 (Figure 5):


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The pre-marital health screening program serves several purposes:

1. To ensure couples receive effective health counseling and appropriate advice before

marriage.

2. To diagnose previously undetected hereditary conditions in individual cases.

3.To protect the community and the unborn children from the financial, physical and

psychological burden associated with hereditary conditions.

4. To provide counseling which might alleviate anxiety, especially if there is a family history of

certain genetic diseases or consanguinity.

PTPP has already started offering pre-marital screening tests to the general public. PTPP is

holding free pre-marital screening camps at educational institutes and other public places.

Pre-marital Thalassaemia screening camps


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7. Weekly and Monthly Progress Reports FO’s are collecting data on weekly and monthly basis and sending these reports to the head office

Punjab Thalassaemia Prevention Programme(PTPP) Overall Progress Report (Field Officer)

Overall Activities of Punjab Thalassaemia Prevention Programme Jul Aug Sep Oct Nov Dec 13-Jan Feb

Total Activities

Number of awareness events/activities organized 22 30 47 107 88 70 133 105 602

Number of Thalassemic children registered 322 589 352 1104 1143 94 212 171 3987 Number of outreach visits conducted 42 41 96 129 96 83 186 135 808 Number of Thalassemic couples counselled 76 92 118 82 136 107 199 163 973 Number of families identified for screening 74 62 88 73 103 89 163 122 774 Number of samples collected 26 117 462 699 850 824 1914 672 5564

Number of individuals in each family screened for Thalassemia 30 12 287 699 818 824 1894 673 5237

Number of couples offered genetic counselling in pre-natal diagnosis 9 13 28 39 81 31 79 62 342 Number of HCP trained in screeing,counselling & pre-natal diagnosis 15 48 80 104 92 46 69 119 573 Linkages developed with other departments & NGOs 12 17 24 51 36 32 41 46 259 Any research material/awareness material developed 1 3 0 0 1 0 7 6 18 Other 7 19 54 54 83 48 119 70 454

602

3987

808 973774

55645237

342573

25918

454

0

1000

2000

3000

4000

5000

6000

Number of awareness

events/activities organized

Number of Thalassemic children

registered

Number of outreach visits conducted

Number of Thalassemic couples

counselled

Number of families identified for

screening

Number of samples collected

Number of individuals in each family screened for

Thalassemia

Number of couples offered pre-natal

diagnosis

Number of HCP trained in

screeing,counselling & pre-natal diagnosis

Linkages developed with other

departments & NGOs

Any research material/awareness material developed

Other


30

8. Blood Sampling and Thalassaemic Carrier Testing

PTPP has started offering Thalassaemic carrier testing services at PTPP head office. The

mechanism of this work can be explained in a flow chart:

Thalassaemia Carrier Testing Report

Districts Family

# Sample

# Total Samples

Screened Carrier Non

Carrier Carrier

(%) Non Carrier

(%) Gujranwala 41 426 202 64 134 32 68 Kasur 21 299 102 51 59 50 50 Bahawalnagar 20 403 188 59 128 31 69 Jhelum 13 227 168 61 106 36 64 Faisalabad 40 479 220 84 129 38 62 Multan 12 267 66 24 42 36 64 Vehari 25 501 207 38 148 18 82 Bahawalpur 10 206 26 7 11 27 73 Sheikhupura 18 290 223 81 146 36 64 Lodhran 30 580 136 50 68 37 63 Toba Tek singh 32 767 355 108 259 30 70 Lahore 36 290 63 25 39 40 60 Khanawal 15 211 46 17 26 37 63 Muzaffargarh 25 804 152 56 79 37 63

Total 338 5750 2154 725 1374 34 66


31

0

20

40

60

80

Carrier(%) Non Carrier(%)

32

68

GUJRANAWALA

0

20

40

60


50 50

KASUR

0

20

40

60

80


31

69

BAHAWALNAGAR

0

20

40

60

80


36

64

JHELUM

0

20

40

60

80


38

62

FAISALABAD

010203040506070


36

64

MULTAN


32

0

20

40

60

80


30

70

TOBA TEK SINGH

0

20

40

60

80


36

64

SHEIKHUPURA

010203040506070


37

63

LODHRAN

020406080

100


18

82

VEHARI

0

20

40

60

80


27

73

BAHAWALPUR

010203040506070


40

60

LAHORE


33

9. CVS Report

An effective coordination has been developed between PTPP and NGOs working in different

districts of Punjab. Therefore, patients are being referred to PTPP for pre-natal diagnosis from

different areas of Punjab. So far PTPP has performed 30 CVS tests;

CVS Report

Punjab Thalassaemia Prevention Programme(PTPP)

Sr # Districts CVS Results

Carrier Non Carrier Major

1 Faisalabad - Yes - 2 Multan Yes - - 3 Faisalabad - - Yes 4 Multan Yes - - 5 Lahore Yes - - 6 Sheikupura Yes - - 7 Lahore Yes - - 8 Chak jhumra Yes - - 9 Lodhran - Yes -

10 Toba Tek Singh Yes - - 11 Depalpur Yes - - 12 Rajanpur Yes - - 13 Lahore - Yes - 14 Gujranwala Yes - -

0

20

40

60

80


37

63

KHANEWAL

0

20

40

60

80


37

63

MUZAFFARGARH


34

15 Sheikhupura - - Yes 16 Vehari Yes - - 17 Faisalabad Yes - - 18 Gujranwala Yes - - 19 Multan - Yes - 20 Faisalabad Yes - - 21 Multan Yes - - 22 Multan - Yes - 23 Multan - Yes - 24 Multan Yes - - 25 Multan Yes - - 26 Multan - - Yes 27 Sialkot - Yes - 28 Faisalabad Yes - - 29 Vehari Yes - - 30 Lahore Yes - -

0

5

10

15

20


20

73

CVS Results


35

Districts Vise (NO of CVS requests)

3

1

00

0.51

1.52

2.53

3.5


Lahore


3

1 1

00.5

11.5

22.5

33.5


Faisalabad


2

0 00

0.5

1

1.5

2

2.5


Vehari


1

0 00

0.20.40.60.8

11.2


Chak Jhumra


1

0 00

0.20.40.60.8

11.2


Toba Tek Singh


1

0 00

0.20.40.60.8

11.2


Rajanpur



36

5

3

1

0123456


Multan


2

0 00

0.5

1

1.5

2

2.5


Gujranawala


1

0

1

00.20.40.60.8

11.2


Sheikhupura


0

1

00

0.20.40.60.8

11.2


Lodhran


1

0 00

0.20.40.60.8

11.2


Depalpur


0

1

00

0.20.40.60.8

11.2


Sialkot



37

10. Conclusion

Year 2012 was a progressive period for PTPP. Thalassaemia preventive services have been

established in 16 districts of Punjab and good linkages has been developed between all

stakeholders. In coming days, the PTPP looks forward to enhance its quality of services and

determined to establish Thalassaemia preventive services in all 36 districts of Punjab.

References

1. Rehman A. Beta Thalassaemia Prevention and Pakistan. Pak Paed J 2011; 35(2): 55-62

2. Arif F, Fayyaz J, Hamid A. Awareness among parents of children with Thalassaemia major. J Pak Med Assoc 2008; 58(11): 621-24.

3. SH Ansari and TS Shamsi . Thalassaemia Prevention Programme. Haematology

Updates 2010.

4. Khattak MF, Saleem M. Prevalence of heterozygous beta-Thalassaemia in northern areas of Pakistan. J Pak Med Assoc 1992; 42(2): 32-34.

5. Gezairy HA. Screening programmes for haemoglobinpathies globally and in the Middle

East Region. WHO, EMRO 2009.

6. Weatherall DJ, Clegg JB. Inheritedhaemoglobin disorders: an increasingglobal health

problem. Bull World HealthOrgan 2001; 79(8): 704–12.

7. Kuliev AM, Modell B. Problems in the control of genetic disorders. Biomed Sci 1990;1:3–17

2

8. WHO Secretariat Report. Thalassemia and other hemoglobinopathies. Provisional agenda item 5.2, EB 118(5). Geneva: World Health Organization 2006

9. Silvestroni E, Bianco I, Graziani B, Carboni C, D’Arca SU. First premarital screening of thalassaemia carriers in intermediate schools in Latium. J Med Genet 1978;15:202–7


38

10. Neal-Cooper F, Scott RB. Genetic counselling in sickle cell anemia: experiences with

couples at risk. Public Health Rep 1988:103:174–8.

11. Tosun F, Bilgin A, Kizilok A. Five-year evaluation of premarital screening program for hemoglobinopathies in the province of Mersin, Turkey.Turk J Hematol 2006;23:84–89.

12. Al-Arrayed SS. Review of the spectrum of genetic diseases in Bahrain. Eastern Mediterranean Health Journal 1999:5:1114–120.

13. Samavat A, Modell B. (2004). Iranian national thalassaemia screening programme. BMJ 329:1134–1137.

14. Hamamya H, Al-Haitb S, Alwanc A, Ajlounia K. Jordan: Communities and community genetics. Commun Genet 2007;10:52–60.

15. AlHamdan NA, AlMazrou YY, AlSwaidi FM, Choudary AJ. Premarital screening for thalassemia and sickle cell disease in Saudi Arabia.

16. Centres for Diseases Control and Prevention, MMWR. Perspectives in Disease Prevention and Health Promotion Public Health Service Guidelines for Counselling and Antibody Testing to Prevent HIV Infection and AIDS.

17. Chern JP, Lin KH, Lu MY, et al. Beta-thalassemia major births after National Screening Program in Taiwan. Pediatr Blood Canc 2007;50:58–61.


39

11. Contact Us Regional Centre (Lahore)

2nd Floor, New Emergency, Sir Ganga Ram Hospital,Lahore.

Email:[email protected]: 042-36373872-3 Focal Person:

. Muhammad Navid Tahir Project Coordinator

Punjab Thalassaemia Prevention Programme, Sir Ganga Ram Hospital, Lahore. Cell #: 0333-4245831

Regional Centre (Multan) Children Complex, Hospital, Multan.

Focal Person: Dr. ShahidHafeez

Regional Coordinator, Punjab Thalassaemia Prevention Programme

Children Complex, Hospital, Multan. Cell #: 0333-6220957

Regional Centre (Bahawalpur) Bahawal Victoria, Hospital, Bahawalpur.

Focal Person: Mr. Naveed Ijaz

Regional Coordinator, Punjab Thalassaemia Prevention Programme

Bahawal Victoria Hospital, Bahawalpur Cell #: 0300-9686379

Regional Centre (Rawalpindi) Holy Family, Hospital, Rawalpindi.

Focal Person: Col. ® ShafiUllah

Regional Coordinator Punjab Thalassaemia Prevention Programme

Holy Family, Hospital, Rawalpindi. Cell #: 0306-5248850, 03347727675

Name District Cell # Name District Cell # Nasir Ali Gujranwala 0301-4954959 Sajjad Ali Gujranwala 0345-4830036

FurrukhShahzad Kasur 0300-888952 Furrukh Abdullah Kasur 0333-4947174 NaeemUl Hassan Vehari 0343-7141812 Muhammad Faisal Toba Tek Singh 0344-7845243

Allah Rakha Faisalabad 0302-6086352 Muhammad Asif Faisalabad 0321-7802383 ZafarTahir Muzafargarh 0302-7676289 Muhamamd Akbar Muzafargarh 0301-6987660

SajidHussain Lodhran 0345-8792597 Hafiz MuhammdShafique Lodhran 0300-7826046

Asif Iqbal Sheikhupura 0345-4491073 IrfanElahi Sheikhupura 0300-4079621 Tanveer Mahdi Attock 0333-7684754 Muhammad Saeed Attock 0312-5281587

WasimAbdeen Bahawalnagar 0333-6308642 FaheemZafar Khanewal 0333-6214861

KhurramShahzad Jhelum 0333-5844115 For suggestion & feedback please write to us at:

[email protected], [email protected],[email protected]

mailto:[email protected]�

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Punjab Thalassaemia Prevention Programme (PTPP) Progress Report

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