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Thalassaemia on the rise, govt and private sector must join hands to get rid of life-threatening disease

KITCC has been endeavoring hard on the prevention, awareness and treatment of thalassaemics for the last 18 years
Interview with Muhammad Iqbal — Chairman, KITCC

PAGE: TELL ME SOMETHING ABOUT YOURSELF AND KASHIF IQBAL THALASSAEMIA CARE CENTRE (KITCC):

MUHAMMAD IQBAL: I was born as thalassaemia minor and so was my wife. As a result of that we got two daughters as thalassaemia minor and one son named Kashif Iqbal as thalassaemia major. My son lived for sixteen years and died in London. During this period we as a parent remained worried and running around. I decided to serve the ailing community suffering from the genetic disease thalassaemia. Therefore, Kashif Iqbal Thalassaemia Care Centre, was established in 1996 at Quaidabad initially and shifted to Mujahid Colony at Plot No. A-19/20 Street-1. Since then we are providing free blood transfusion to the thalassaemic children and spreading awareness among the people by visiting schools, colleges, universities and other organizations.

PAGE: WHAT IS YOUR GENERAL PERSPECTIVE ON THE HOSPITALS AND HEALTHCARE IN PAKISTAN?

MUHAMMAD IQBAL: I will emphasize two aspects one is awareness about the thalassaemia disease so that everyone is tested for thalassaemia minor status with a view to prevent marriages between two minors. Second is providing timely and safe ‘blood transfusion to patients’ who are born with thalassaemia major and iron chelation therapy and care for other complication risen during treatment. In this regard, government should ensure opening of thalassaemia care centre at district and tehsil levels. Unfortunately there is no such care centre existing all over the country

PAGE: HOW COULD THE POOR AFFORD EXPENSES OF THE TREATMENT OF THALASSAEMIA?

MUHAMMAD IQBAL: Poor and needy are unable to afford the heavy expenditures, which are incurred on ‘blood transfusion; and medicine required for iron chelation therapy. Therefore, they have to look upon us and we are helping them out through ‘zakat funds’.

To meet these expenses our trustees and other people are providing us zakat, khairat and fitra. The funds so collected are utilized for providing treatment and social needs of the thalassaemic families. The treatment extended to them is free of charge in Kashif Iqbal Thalassaemia Care Centre.

PAGE: WHAT IS BEING DONE BY KASHIF IQBAL THALASSAEMIA CARE CENTRE TO FACILITATE THE POOR?

MUHAMMAD IQBAL: KITCC Objectives are:

a- Provide diagnosis and treatment facilities to the children suffering with thalassaemia, hemophilia & leukemia or any blood related diseases.

b- Create awareness about thalassaemia and its prevention measures.

c- Extend relevant welfare facilities and facilitate poor thalassaemic families to confront hardships.

d- Motivate youths, couples and marriageable youth for having thalassaemia test to avoid birth of thalassaemic babies.

e- Enhance resources and streamline capabilities, finance, management and infrastructure of the trust.

f- Strengthen and develop treatment and awareness facilities of the trust.

The KITCC has been endeavoring hard on the prevention, awareness and treatment of thalassaemics for the last 18 years. Its efforts for combating thalassaemia envelop the following measures:

a- KITCC has so far registered 500 patients for administrating blood transfusion and providing complete treatment protocol as per recommendation of Thalassaemia International Federation Nicosia, Cyprus. It intends to increase the number of patients with the level of 900.

b- It comprises 30-bed transfusion ward with the capacity of conducting 1,800 blood transfusion per month.

c- It has its own blood bank and laboratory equipped with modern machines for in-house screening.

d- It has been providing safe blood transfusion, medicine, ultrasound and laboratory test services to the patient all under one roof operation.

e- The KITCC has been extending E.N.T services to its registered patients and providing essential medical services under blood disease specialist and qualified para-medical staff.

f- Under the motive ‘Prevention is better than cure’ the KITCC has launched its awareness campaign, which involves thalassaemia screening test, awareness sessions in universities, colleges, corporate sectors, industries and communities, issuance of guideline and literature regularly, conduct of counseling session with parents of thalassaemia patients and motivation of the masses for adaptation of preventive measures.

g- It has been providing its services to all without consideration of caste and creed.

h- It has been operating under democratic principles governed by the Board of Trustees having 19 renowned and capable Trustees and a Managing Committee represented by nine elected trustees as its members.

i- Having realized the role played by legislative measure for eradication of thalassaemia in Italy, Iran and Saudi Arabia, the KITCC has been struggled hard to pressurized the federal and provincial government for taking legislative measure to stop birth of thalassaemic children. The KITCC management with the help of subject specialists of Fatmid Foundation prepared the draft of Thalassaemia Eradication Act 2012 and obtained consensus of the expert of all NGOS and health department authorities over it through the resolution passed in the seminar held at Karachi on 28th April 2012. Then its Trustee Senator Abdul Haseeb Khan get the Ordinance passed from the Governor of Sindh, which later on was converted into Act and enacted as Thalassaemia Control and Prevention Act 2013. Efforts are going on to popularized the act and implement it and its provisions throughout Sindh.

j- Due to the efforts of motivation and counseling, the General Body officials of Bantwa Memon Jamat Karachi, made community agreed to ask the community members to go for thalassaemia test before marriage for which KITCC has offered the facility to conduct this test free of charge.

k- The KITCC helped the communities all over Pakistan to establish thalassaemia centres and thus it succeeded to spread its network in all the four provinces of Pakistan. Till now 16 thalassaemia centers were got established by motivating local communities. KITCC has been providing guidelines and technical support to these centers.

Briefly we may proclaim that Kashif Iqbal Thalassaemia Care Centre Trust is a non profitable organization. Though we do not get any financial aid from either provincial or federal government but, still, we are determined to provide greater relief to the poor and needy thalassaemic patients and their families:

 Free ‘blood transfusion’ after every fifteen days interval.
 Medicines for iron chelation.
 Free T2* MRI from Aga Khan by paying them by us.
 Free food every day during blood transfusion.
 Free Rashan Package during Ramazan every year.
 Free Eid clothing to all family members of thalassaemic patients prior to Eid.

PAGE: KINDLY TELL US ABOUT THE DONATION YOU RECEIVE, EXPANSION AT KASHIF IQBAL THALASSAEMIA CARE CENTRE, AND IN WHICH OTHER CITIES OF PAKISTAN IS KASHIF IQBAL THALASSAEMIA CARE CENTRE SERVING THE NATION?

MUHAMMAD IQBAL: Whatever donation we received, a proper receipt duly signed by the Chairman is given to the donors. We have three income heads under which Trust accounts are maintained as under:

 Zakat Fund
 Donation Fund
 Sadqa & Fitra Fund

All accounts are audited every month by the qualified Internal Auditor and every year audited by External auditor i.e., Mushtaq & Co. Many independent thalassaemia care center are functioning across Pakistan by their own Board of Trustees. However, we have given them basic guidance. Recently, we have initiated the awareness program about thalassaemia disease at Lahore with the name of Punjab Chapter. As every day there is an increase in the newly born thalassaemia major children, so, we keep thinking and planning for the expansion of our facility to meet the futuristic requirements.

PAGE: WHAT SHOULD BE DONE FOR AWARENESS SO THAT WEDDING MAY BE SUBJECT TO TEST?

MUHAMMAD IQBAL: Thalassaemia disease can only be eradicated from Pakistan if civil society, media and government sit together and formulate spreading extensive awareness among the people. Though Thalassaemia Act 2013 has been passed in the Sindh Assembly, but, unfortunately it has not been implemented so far. Dr. Azra has also presented a Thalassaemia Prevention Bill in the National Assembly in recent past. Let us hope and pray that these Bill are passed and implemented in its later and true spirit.

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