Prevention of Thalassemia: Law on blood tests before marriage soon

[Naveed Yaseen]

FEDERAL Social Welfare Minister Samina Khalid Ghurki has said the federal government would soon pass legislation for mandatory blood tests of couples before marriage at federal and provincial level to avoid preventable blood complications and other disorders in children.

She was speaking at a public health seminar on “Thalassemia - its prevention, awareness and social responsibilities” organised by the Mir Khalil-ur-Rehman Memorial Society in collaboration with Sundas Foundation in connection with World Thalassemia Day at the auditorium of Lahore Chamber of Commerce and Industry on Friday.

Samina Ghurki said Islamic countries such as Saudi Arab and Iran had already made legislation in this regard. She also stressed to create awareness among masses for prevention of thalassemia by conducting blood screening tests.

The federal minister said that cousin marriages were also a major cause of emergence of a large number of thalassemia patients every year in the country, and this trend should be discouraged to avoid blood diseases and other physical disorders. She said the government would stand by thalassemia patients despite the fact it government was entangled in a host of crises. Like modern facilities in public sector hospitals in the cities, she also stressed the need to provide facilities of blood transfusion in public sector health institutions in smaller districts across the country.

Punjab Law Minister Rana Sanaullah also stressed the need to create awareness among masses to prevent thalassemia among the next generation. He proposed to incorporate an article of mandatory blood test of prospective couple in Nikahnama to avoid the spread of thalassemia.

He said the Punjab government would take every step to provide preventive and curative health facilities to the people in the province, and in this regard, he added the government could stem the spread of thalassemia by providing blood screening facilities in public sector hospitals and BHUs in remote areas of the province.

CM’s Task Force for Elementary Education and Punjab Education Foundation Chairman Raja Muhammad Anwar said mankind had never bowed before natural and unnatural calamities and diseases, and added that human beings had discovered cures of deadly diseases such as plague, malaria, chicken pox, TB, etc, which had killed hundreds of thousands of people around the world. Similarly, he said, the Thalassemia disease also required prevention more than treatment and cure.

While working with an NGO for the rehabilitation of deaf and dumb people, he informed that it was observed that parents of over 90 per cent patients were cousins. “Several medical and blood complications can be prevented through blood tests before marriages between cousins,” he asserted.

LCCI President Mian Muzaffar Ali said that people could prevent a lot of problems and diseases with a slight improvement in lifestyles, as he believed that most of the problems and diseases were self-created hence preventable.

Renowned columnist and Sundas Foundation Chairman Munnoo Bhai said that Sundas Foundation was working in three cities, where screened blood transfusion was carried out upon over 5,000 thalassemia patients twice a month. He said the organisation was providing blood and safe blood transfusion services to thalassemia patients free of cost after getting donations of safe blood from healthy donors.

According to a safe estimate, he said, the people of Pakistan gave Rs 140 billion in charity every year and half of which had been going to professional mendicants. “If this charity is properly used then most of the problems of people could be resolved and country’s progress ensured. The people are very passionate about ameliorating the lot of the needy people in the country,” he added.

King Edward Medical University (KEMU) Vice-Chancellor Prof Dr Zafarullah Khan said that developed countries had made legislation to control the spread of thalassemia disease, while it was multiplying in our country in the absence of legislation for prevention of this deadly disease. “It could easily be transmitted from parents to their children,” he said.

Qazi Abdul Qadeer Khamosh urged the government to provide diagnostic and treatment facilities to the thalassemia patients in public sector hospitals.

Rakhshanda Naveed suggested that there should a separate channel to create awareness regarding prevention, control and treatment of diseases among the people in the country. She also appealed to philanthropists to adopt a thalassemic patient for their effective treatment to enable them to lead a normal life.

Besides, Pakistan ENT Association Vice-President Dr Nasrullah Rana, TV artiste Kanwal and others also spoke on the occasion.

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Legislation suggested to contain thalassaemia

PESHAWAR: Speakers at a seminar Friday urged the government to make special legislation to prevent rapidly spreading thalassaemia disease in the country, particularly the Frontier province.

The event was arranged by Hamza Foundation, a non-governmental organisation working for rehabilitation of thalassaemic children. It was attended by a considerable number of children hit by the disease and their parents.

Notable among those who spoke on the occasion were Hamza Foundation Chairman Ijaz Ali Khan, literary figure Abaseen Yousafzai, Project Director of Tanzim Lissail-wal-Mahroom Farrukh Ser and Dr Fakhar Zaman.

The speakers said the main reason for the rapid spread of thalassaemia was cousin marriages. They urged the government to make thalassaemia test compulsory for both men and women before marriage so that two persons having the gene of the disease could not marry.

This method, they said, had been adopted in Saudi Arabia, the United Arab Emirates, the Maldives, Iran and some Western countries where the spread of the disease was controlled to a great extent after the introduction of the law.

The speakers said some 10 million people across the country were suffering from minor thalassaemia and 88,000 children from acute thalassaemia. They said it was unfortunate that the number of thalassaemic children was much higher in NWFP than other parts of the country. The very reason for that was the lack of awareness among the people, they pointed out.

The speakers said the very purpose of marking the World Thalassaemia Day was to create awareness among the masses to take preventive measures against the fatal disease. They urged the well-off people and philanthropists to extend maximum cooperation to the charity-based organisations working for eradication of thalassaemia.

They suggested that the government should launch special publicity campaigns through print and electronic media to do away with the disease as had been done in case of polio, HIV/AIDS and TB, etc.

The well-to-do people should also extend financial support to the non-profit organisations working for treatment of thalassaemic children so that they could provide better facilities to the infected children, they added.

The speakers were of the opinion that the thalassaemic children could lead a healthy life, if they were provided proper medication and other facilities. This is the practice in many countries across the world, they added.

The permanent treatment of thalassaemic children is bone marrow transplant, which not only cost about Rs20 million but there are only eight per cent chances of their recovery from the disease. As majority of the people of Pakistan, particularly NWFP, hail from poor backgrounds, the infected children should be provided proper medication so that they could be able to lead a normal life, added the speakers.

http://www.thenews.com.pk/daily_detail.asp?id=176545