Collective news about Thalassemia Day!

Efforts to combat thalassemia lauded

BY OUR STAFF REPORTER
KARACHI – Lieutenant General Syed Ather Ali, Commander 5-Corps on Sunday lauded the efforts made by Hussaini Blood Bank in combating thalassemia. He said that Hussaini Blood Bank was serving the thalsassaemics patients without any discrimination of creed, colour and caste and underlined the need for more centres to make the country thalassemia-free. He said this while addressing at Hussaini Blood Bank on the eve of Thalassemia Day.

Lieutenant General Syed Ather Ali Commander 5-Corps also announced Rs 1,00,000 donation for Hussaini Blood Bank added that government would help it to set up more centres.

He said the children suffering from thalassemia should be treated like other children without any discriminatory attitude.

He lauded the efforts of thalassemic children, who participated in singing national songs, dancing and tableaus. He said that he was extremely happy to see the young children with undaunted spirit despite the problems they were facing in their life.

While, Altaf Nazim Managing Trustee of Hussaini Blood Bank in his welcome address pointed out that thalassemia children can perform as well as other children in all fields and should be given encouragement by their families and society.

He also stressed the need to create universal awareness about thalassaemia adding that today unfortunately, a little attention is being paid to thalassemia, which is rapidly on rise in the country.
Until and unless immediate action is taken for prevention of this disease, thalassemia is like to break out like an epidemic that will be beyond the control, he said and added that our aim was to have a thalassemia-free country.

Thalassaemic children presented shield to Lieutenant General Syed
Ather Ali Commander 5-Corps. [Courtesy by : Nation.com.pk]

Friday, May 09, 2003

Law to ensure blood screening: minister

Staff Report
LAHORE: Punjab Health Minister Dr Tahir Ali Javed on Thursday said the government would pass a law committing all blood banks to screen blood before transfusions.

He said the danger of contracting diseases such as Hepatitis during blood transfusion could not be prevented without blood screening. Therefore, the government had decided to introduce legislation in this regard. He said blood transfusions without screening were playing havoc with the people’s lives and steps were needed to ensure healthy blood transfusions.

Dr Javed said 10 percent of the country’s population was suffering from thalassaemia major and minor, Hepatitis and other diseases. He said the provincial government would set up thalassaemia centres at the district level to treat sufferers. Addressing a function at the Children Library Complex in connection with International Thalassaemia Day organised by the Thalassaemia Society of Pakistan. He said the thalassaemia centre set up at Ganga Ram Hospital would be bettered and special funds would be allocated for the purpose.

He said the government would cooperate with NGOs running thalassaemia treatment centres and would provide laboratory apparatus, necessary medicines and other related equipment.

He said screening kits worth Rs 60 million were being provided at the district level with the cooperation of donor agencies to facilitate the public free of cost.

He said the government was providing quality health care to the people and private enterprises and philanthropists would be encouraged to work collectively for the cause.

He said the government would also take measures to provide medicines in this regard. However, it was also the society’s responsibility to come forward and play their due role for the disease’s treatment, he concluded.

He said there was need to educate people more on thalassaemia, Hepatitis and other diseases that could be contracted due to the patients’ own negligence. “By creating health awareness among the masses, we can save humanity,” he added.

NGO’s can play vital role for treatment of Thalassemia: Punjab chief minister’s Human Rights Advisor Rana Ijaz Ahmad Khan on Thursday said the Non Governmental Organisatios could play an active role in the treatment and proper treatment of Thalassemia. He was addressing a function at the Alizeb Foundation in Fatehgarh, which was arranged in connection with the World Thalassemia Day. Provincial ministers Akhtar Hussein Rizvi, Rana Shamshad Ali Khan and Parks and Horticulture Authority (PHA) Director General (DG) Kamran Lashari and others were present.

Mr Khan said, “People working for the cause of public well being were noblest in the society and media should give them full support so that the movement of human welfare could grow further. The government will fully support and give financial assistance to those NGOs from the Punjab Baitul-Maal who was efficient.”

He appreciated the fact that there were about 33,000 children registered with various NGO’s in the urban areas of the country. [Courtesy by : DailyTimes.com.pk]

Consanguine marriages termed major cause of Thalassemia
By Farhat Anis

KARACHI: Consanguine marriage is considered to be a major factor for an alarming increase of approximately 5000 Thalasaemic patients annually in Pakistan. Experts and pathologists at a recent press briefing held at the Hussaini Blood Bank in Karachi disclosed this and urged all the stakeholders especially the government to initiate a major campaign to raise awareness amongst the public about Thalassemia. Furthermore, the experts are apprehensive that the proposed Bill regarding mandatory blood screening of all couples before marriage to ascertain that both may not be carriers of Thalassemia Minor holds no value in the absence of required testing facilities at the government health care centres in the country.
In the wake of the World Thalassemia Day falling on May 8, the Hussaini Blood Bank is organising a special event in Karachi on May 7, 2005 with a variety of activities to create awareness and highlight prevention for Thalassemia.
Altaf Nazim of Hussaini Hematology and Oncology Trust while talking to journalists observed the proposed bill to be an immature attempt keeping in view the absence of required infrastructure. He stressed concrete efforts to assure safe blood supply, proper HB Electrophoresis test’s facilities for the masses, and provision of treatment of various blood borne diseases in the country.
The testing facility could also be complimented with a full-fledged Thalassemia Treatment Center as a considerably high number of Thalasaemic children are being referred to Karachi from Balochistan and Sindh.
Thalassemia Major, an incurable health condition consequent, according to many physicians, to marriage between two Thalassemia Minor is being increasingly reported due to lack of owing realisation regarding cause of the disease as well as absence of required testing facilities in public sector health facilities.
The test costs no less than 9,000/- to 10,000/- per month and it includes blood transfusion, iron chelating therapy as well as miscellaneous tests. The cost of the test at the urban centers are not only largely non affordable for urbanites but are simply beyond reach of rural populations, who are but gradually realising the prevalence and its severity among themselves and in their posterity.
Dr Hussain Hadi, Head of Department of Thalassemia, however, observed with grave concern the inability of many of the qualified medical professionals to make proper diagnosis of disease and often confusing it with anaemia aggravating the condition of the infant patient.
Furthermore, Dr Farrukh Hasan, Head of Department Blood Bank said that unfortunately our doctors are totally unaware of the blood usage, which increases both the cost of the supply and the amount of wastage. If doctors have proper knowledge and they recommend patients with specific details of the blood component that a patient need then one bag of blood can be used for more than one patient, as the blood for supply or transfusion is truly precious.
Dr Sarfaraz H Jafri, Administrator while elaborating the scope of activities at the Hussaini Blood Bank said that it operates in accordance with WHO standards, which is why in 2003, the National Institute of Health assigned the Hussaini Blood Bank the training of non-governmental blood banks under the ‘Global Fund’ project of WHO. [Courtesy by : Jang.com.pk]

People urged to donate blood for thalassemia patients

ISLAMABAD: Ush Zawa, a pulmonologist and head of Medical College Tokyo, Japan, has urged the masses to help thalassemia patients through blood donations and medical assistance.
He made these remarks here at a one-day Symposium on Thalassemia at Pakistan Institute of Medical Sciences.
The symposium was organised by Jamila Sultan Thalassemia Welfare Trust. Thirteen health experts delivered lectures on different aspects relating to thalassemia, its diagnosis, safe blood transfusion, iron chelation in thalassemia and family screening.
He said that thalassemia is a disease which kills unless treated properly and in time. It also needs to be diagnosed at time, he added.
Dr. Anwarul Haq, head of Pathology Department PIMS, urged the people to donate blood voluntarily as the thalassemia patients needed screened blood transfusion for survival time.
On the occasion, he also called for the awareness campaign for the discouragement of cousins marriages, which is reportedly high in the rural areas of the country.
Giving the overview of the thalassemia in Pakistan Dr Khalid Hassan professor of Hematology PIMS said in fact 70% of marriages that occur in the rural community are between close cousins and as a result hereditary disorders are common and this not only includes thalassemia but also many other disorders, he said.
He urged print and the electronic media to spread the message with regard to discourage close cousin marriages which are unfortunately responsible for a lot of morbidity and mortality among children in the country.
Dr Hasan Zahir, in-charge blood Bank PIMS, said blood products for patients with thalassemia should be obtained carefully.
On the topic of Iron chelation in thalassemia, Dr. Mohammad Tahir, assistant professor of Paediatrics, Islamic International Medical Collage Rawalpindi, said the primary goal of chelation therapy is to achieve safe levels of body iron.
He said that unfortunately, this is a slow process because only a small proportion of body iron is available for chelation at any moment.
This means that when an iron chelator is given clinically, only a small proportion of the drug binds iron before this is excreted or metabolised, he added.
Lt Gen (r) Fahim Ahmad Khan, Dr Yasmin Rashid, Dr Jovaria Manna, Dr Rizwana Choudhry and Dr Abid, Managing Trustee of Jamila Sultana Thalassemia Welfare Trust, also addressed the participants.
According to Samera Khan, project director of the trust, a large number of NGOs and welfare trusts are working on thalassemia in private sector but the goal of thalassemia free Pakistan cannot be achieved without government support.
She suggested that legislation of blood screening before marriage is the requirement of the day and young people both male and female must be encouraged to get thalassemia carrier test before marriage. [Courtesy by : Jang.com.pk]

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