Kashif Iqbal Thalassaemia Care Center

An Entrepreneurship Case

By: Misbah Khalil Khan Muhammad Nabeel Akhtar Waqas Ahmed Siddiqui Omer Siddiqui

6/1/2011

Mr. Muhammad Iqbal sat down on his office chair and relaxed after a long tiring day of work. But it was business as usual for him. A large container of donations from London had just arrived, and he had to deal with the customs officials who were trying to extort some money under the table. He reflected back on the last 20 years of his life, what he achieved and what was remaining to be accomplished. A well respected officer in Pakistan Steel Mills in the past, Mr. Iqbal left no stone unturned to make his childs dream a reality- The Kashif Iqbal Thalassaemia Care Center. The Center was started by Mr. Iqbal, after immense personal tragedy. The center, a non-profit organization had a daily cost of more than Rs 30 million all over Pakistan.

Introduction
Mr. Muhammad Iqbal married his first cousin in the winter of 1978. They had a boy in 1980, who they named Kashif. Kashif was an extremely lively and healthy infant but nature had played a vicious game against him. Kashif was 3 months old when his health deteriorated, reports showed his hemoglobin level as low as 4. Mr. Iqbal acted on the doctors advice and Kashif was given a blood transfusion. The doctor didnt ask the parents to proceed for further tests as the transfusion process continued four or five times. Mr. Iqbal and his spouse became exceedingly worried and decided to pay a visit to the top pediatrician in Karachi, Dr. Ghaffar Billo. Dr. Ghaffar asked the blood tests of Mr. and Mrs. Iqbal to be done, as Kashif was living on others blood his tests werent expected to be accurate. Test reports were prepared, and Mr. Gaffars worst fears were confirmed when it was found that Kashif had was a Thalassaemia major. This is a deadly decease which requires patients to have blood transfusions every few days, a recurring expense and continuing mental pain. Kashif lived on through the early years of his life, through these blood transfusions. He joined school but his health showed no signs of improvements. Mr. Iqbal went to all the Faakirs and Pirs in the country, but even they had no cure for an unlucky but determined Kashif. One day when Kashif was admitted in hospital and his health had deteriorated so much that he became unconscious. Mr. Iqbal feeling helpless found himself in Gods house, praying for a miracle. Then one of the doctors, who apparently saw him pleading at the mosque, told Mr. Iqbal that

Bone Marrow Transplant was a cure for Kashifs disease but it was extremely expensive and only done in Britain, Italy and USA which costs 9 million, 7 million and 20 million respectively. These costs were unimaginable for Mr. Iqbal to afford, especially considering when he had strain relationships with his bosses at PSM. However, Mr. Iqbal turned into a fearless man and replied to the Doctor, I do not have good relations at the PSM but I have very good relations with My Lord, Im sure hell help. Determined with the aim of bringing lifes perfections back to his beloved son, Mr. Iqbal plead for assistance from his seniors at office but to no avail. His friend Ameer Tanaudi gave him an idea of collecting funds from 22000 PSM Employees. He said if each of them contributed Rs 100/- theyll be able to collect Rs 2.1 Million from here. The move was a success, gaining heart Mr. Iqbal approached Kashifs school and other universities. Eventually with their help and coordination Mr. Iqbal raised sizeable amounts, but he needed more. In June 1990, Mr. Iqbal visited the PTV head office where he was asked to contact the famous actor/comedian Moin Akhtar, by Ms Ghazala Yasmeen. Upon meeting Moin Akhtar the actor agreed to help him out in any way possible for Kashif. Akhtar being a man of his word went to meet people did shows, for raising money for Kashifs treatment. He arranged a grand show for PSM employees where he raised 7.35 million for Kashif. Much to Mr. Iqbals dismay, the PSM top management refused to clear the money, even refusing the actor himself on the face and threatening Mr. Iqbal. With only a small amount with him and Kashifs condition worsening, Mr. Iqbal decided to fly to Italy for treatment regardless. Performing Umrah on the way, the family landed in Rome in the summer of 1994. The Italian doctors notified Mr. Iqbal that Kashifs iron levels were alarmingly high; therefore a bone marrow was impossible. Doctors insisted on going back to Pakistan, but Mr. Iqbal vowed not to go to back unless Kashif was cured. He called up Mr. Mujeeb in London whose number he got from his brother in Mecca after a chance meeting. Mr. Mujeeb arranged him to Ms Yasmeen Niazi in London who helped Mr Iqbal and His family to live in London and contributed immensely for the treatment of Kashif. She gave her house, car and even food arrangements were made. Mr. Iqbal thoroughly believed Allah to be with him, as he went out of money but still got to meet great people who would always support him. The UK government awarded him British Nationality to supports his cause.

The treatment continued for 2 years but Kashifs conditioned worsened. One day Kashif complained of a severe pain in his chest, therefore Mr. Iqbal took him to the hospital. The doctors checked him and told him that according to his reports Kashif should have been dead 7 days back, and was a miracle that he was still alive. Doctors and Press media from America and Europe gathered outside the hospital to have a look at this miraculous child. Kashif had defied odds. The next day at 3 am in the morning while talking to Mr. Iqbal, asking him to lower his bed Kashif passed away. Mr. Iqbal was saddened and he couldnt come to terms with the reality of this world. He wanted to find himself once again. Upon Kashifs burial in London, Mr. Iqbal vowed to ensure that no other Pakistani child would die a painful death as Kashif just because of lack of funds. Therefore the KITCC foundations were laid in London. Various people in the UK extended their hands in immense support for Mr. Iqbal including the famous singer Yusuf Islam (formerly known as Cat Stevens). Carrying a renewed vision in his mind, Mr. Iqbal, a changed man made his way back to Pakistan.

Return to Pakistan

On returning to Pakistan, Mr. Kashifs priority was to identify the no of individual in Pakistan who were Thalassaemia Minor. Upon tremendous hard work where he conducted the research himself and faced increasing skepticism from people, Mr. Iqbal was able to come up with an approx figure of about 100,000+ people affected by Thalassaemia Major compared to 360 in all of UK. With regards to this, Col Sheikh suggested to Mr. Iqbal in order to make an essential contribution to these patients, it was necessary to arrange the infusion pump that are necessary for providing the blood transfusion which they regularly require. Infusion pumps were extremely costly at that time costing around 913 pounds which translates to approximately PKR 100,000/-. This huge amount of money was out of reach of most patients in Pakistan. The first pumps were arranged through donations by Javed Miandad.

History of Thalassaemia

Mr. Kashif researched on the origins of the Thalassaemia in Pakistan to gain a better insight of this disease. According to his research, there were 18 communities that were affected by this disease in Pakistan. He took samples of 200-300 people a day for 2 years and concluded that the most affected community of this disease in Pakistan were the Baloch, followed by Pashtuns and Memons primarily because of the prevalent trend amongst them of inter-family marriages. He also found through his research that this disease came to the subcontinent in the times of Invasion of Alexander the Great. As he had stayed in the Swat Area, there the personnel of his army married the locals and furthermore, an severe epidemic of Malaria broke out in this area during that time due to which most people died except those with Thalassaemia (Mi) which turned out to be a blessing in disguise, as these people show a great tolerance to such diseases. If we look at the world history, well find that Italy and Greece had an alarmingly huge population of Thalassaemia patients so much that every 10th person was affected by this disease. The government tackled with this issue by passing a law which made it mandatory for marrying couples to be tested for Thalassaemia before marriage and forbidden two Thalassaemia Minor from marrying. This decision was subsequently adopted by Iran and Saudi Arabia. Currently, 1/9th of the population of Pakistan is affected by Thalassaemia and social groups are currently holding talks with the government to pass a similar law. A light of success was the passing of bill relating to this in the Sindh Assembly and the social groups are hopefully waiting for it to be accepted in the National Assembly.

Kashif Iqbal Thalassaemia Care Center (KITCC)

Kashif Iqbal Thalassaemia Care Center (KITCC) aims to create awareness in people about this silent disease, to prevent it from growing, and to provide free treatment to those who are a victim of this disease. KITCC has 14 centers operating throughout Pakistan where 25-30 patients are blood transfused in every day free of cost. After the blood transfusion, the patients are administered Disperol injections that decrease the iron levels in the body which increases as a result of after blood transfusions. Along with this, food and other support is also provided to the patients. The policies and quality standards at KITCC are very stringent. The staff hired is people that have been directly or indirectly affected by Thalassaemia. For blood donations, only those with hemoglobin of 13 are allowed to donate blood where as the global criterion is 12 HB. This is done to constructively prolong the time between transfusions. The Vision of Mr. Iqbal is a Thalassaemia Free Pakistan. He started with a humble beginning where he used to go to the Quaid-e-Azam Mazaar used to create awareness by holding banners. He gathered considerable attention by conducting a highly successful rally that was hugely covered by media. From this, he went on to conduct a television show on ARY and on PTV to create awareness of this issue. But the greatest achievement of KITCC was the initiative of manufacturing the Infusion pump locally that tremendously decreases the cost from Rs 95,000 to Rs 6000. This was a major relief to both the foundation and the patients. This hugely increased the capacity of KITCC to help its patients. Even now those who cant afford the pump at this drastically reduced price are given the pumps free of cost and till date, 7000- 8000 people have been donated this pump. For his excellence and great contribution to the society, Mr Iqbal was given the Quaid-e-Azam Award in 1999.

Future Outlook
A few years back a family from India came to KITCC Karachi to get treatment for their son. Mr. Iqbal called all his employees and told them that before his death Kashif, holding a 1 Million Pound Lottery ticket in his hand which he had brought for him, told one of our Indian

acquaintances that one day if I got the prize money of this lottery ticket I would open Pakistans Largest Thalassaemia Center where people even from India would come for treatment. Therefore today his dream has become a reality. KITCC now has 13 -1 4 centers throughout Pakistan. But still it does not have a Center in the capital of its most populated province, Lahore. Being a densely populated city and a hub provincial hub such a center is a necessity. Mr. Iqbal plans to use more means to create awareness among the local population. He went on air recently on a local television show to inform people about Thalassaemia. He also encourages people to adopt Thalassaemia Majors children and help them in filling their cost of treatment. There are a few parents in the country who have done that, but he wishes that this number would increase gradually as people become more aware about the sufferings of these patients. Furthermore on the governmental level it is essential that the authorities pass the bill which is pending in the National Assembly as without authorization people would not be bound to have their tests done before marriages which is an essential preventive measure to curtail further growth of this disease among the masses. But his dream of Thalassaemia Free Pakistan is still a farfetched objective and would require initiatives by all stakeholders.