Health Advocacy through SEPLAA from Jan- April 2010

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The News covers SEPLAA Events, February 2010

The News covers SEPLAA’s Launch of website and Drive

150,000 thalassemia cases in Pakistan
 
 

The News
Sunday, February 14, 2010
By Our CorrespondentLAHORETHERE are over 150,000 thalassemia major cases in Pakistan and the number is growing.“If two thalassemia minor carriers got married then their children could be born with thalassemia major. Therefore, it is of paramount importance to conduct compulsory blood screening before marriage as one of the basic preventive care,” said Ammara Farooq Malik, President of an NGO, Seeds of Education, Policy & Legal Awareness Association (SEPLAA), while addressing the participants at the launching of a Youth Council and website (www.seplaa.com) to create awareness about SEPLAA’s drive “Save a life, save a generation” at its head office in DHA, Lahore, on Saturday.Ammara Malik proposed to the government that every person should be tested at least once for thalassemia traits and this information could be put on their identity cards along with their blood type.She said that camps for diagnosis of thalassemia would be set up in institutions to identify thalassemia minor carriers. She said that Italy and Greece had some of the highest number of cases of thalassemia and those countries had learnt to take care of the problem at the roots by educating their people that thalassemia could be prevented by taking the responsible action of blood testing before getting married. “We need to create awareness about the importance of premarital blood screening to remove the stigma of ‘shame’ or a ‘social taboo’ attached with this practice.Earlier, a video clip of an 11-year-old thalessemic girl Kiran Ashfaq, who died after the failure of her bone marrow transplant, was also shown to highlight the gravity of the issue.Besides, Hassan Awais Wyne, Zahra Wyne, Saman Jaffer, Jaffer Mateen, Khurram Zafar and other members and volunteers were also present.

FRIDAY, FEBRUARY 12, 2010

SEPLAA’s Awareness Drive ‘Save a life, save a generation’ Flyer

Drive against cousin marriages

By Our Correspondent

briefs…
The News
 
 
Friday, February 12, 2010

LAHORE

The Seeds of Education, Policy & Legal Awareness Association has launched an awareness drive “Save a life, Save a Generation” to control cousin marriages which can pose health risks. In this regard, the NGO also officially launched their website during a press conference here at Lahore Press Club. Speaking on the occasion, Ammara Farooq Malik, the President of SEPLAA said, “At least 10 per cent of Pakistan’s population or one in every 10 people is a thalassemia minor carrier. At this estimated rate, the number of thalassemia cases will be doubled to over 200,000 in the next 10 years.”

Informal Talk on the Awareness Drive ‘Save a life, save a generation’  

January, 2010.

Lahore.

The Seeds of Education, Policy & Legal Awareness Association held an informal talk on their recently launched Awareness Drive ‘Save a life, save a generation’.

Speaking on the occasion, the President of SEPLAA Mrs. Ammara Farooq Malik explained that the issue of compulsory blood screening before marriage is one of the basic preventive care that parents to be can take. The issue was elaborated by showing the guests a video clip of an eleven year old thalessemic girl, Kiran Ashfaq,  who died after the failure of her bone marrow transplant. The guests were deeply moved by the memorial video of the girl and expressed their strong commitment to support the cause of SEPLAA.

During the question answer session, several key suggestions were given by SEPLAA members Jaffer Mateen and Khurram Zafar. It was suggested that camps could be set up in institutions where the samples of students could be taken as a routine matter and the students could be informed whether they were thalassemia minor carriers.

Mrs. Ammara Farooq Malik explained at the launch ceremony that if two thalassemia minors carriers got married then their children could be born with thalassemia major. ‘There are over 150,000 thalassemia major cases in Pakistan and the number is growing.’

‘We propose that that every person should be tested at least once for thalassemia traits and this information can be put on their identity cards along with their blood type’, she added.

Some of the guests present expressed their reservation over the expectation of such a blood screening requirement, terming it very difficult to talk about a topic which is considered ‘shameful’ in our society. To this concern, Mrs. Farooq replied that ‘we want to create so much awareness about the importance of premarital blood screening that in a matter of a few years, this concept will become a routine matter and not a cause for ‘shame’ or a ‘social taboo’ as was the case in all the civilized countries. Italy and Greece had some of the highest number of cases of thalassemia and those countries have learnt to take care of the problem at the roots by educating their people that thalassemia can be prevented by taking the responsible action of blood testing before getting married.’

‘It is easier to donate blood but much harder to change the way people think about blood screening before getting married. But we are very hopeful and very enthusiastic to take up this challenge for the sake of our future generations’, she added.

Also present on the occasion were Mr. Hassan Awais Wyne, the Treasurer of SEPLAA, Ms. Zahra Wyne the General Secretary, Mrs. Saman Jaffer founding member and Head of Event Management at SEPLAA apart from several distinguished guests.

In the end, Mrs. Ammara Farooq Malik thanked Mohsin Javed, a student volunteer who had designed the website of SEPLAA. She also thanked the other volunteers, guests and members who helped make the event  a great success.

Later information leaflets about SEPLAA’s drive ‘Save a life, save a generation’ were distributed amongst the guests and the guests were then invited to have tea.

Launch of SEPLAA’s website at D.H.A., Lahore Head Office

January 2010

Lahore.

The Seeds of Education, Policy & Legal Awareness Association (SEPLAA) officially launched their website  at their D.H.A. Lahore Head Office amidst several enthusiastic volunteers, members and concerned citizens.

At th launch ceremony, Mrs. Ammara Farooq Malik, the President of SEPLAA thanked Mohsin Javed, a student volunteer who had designed the website of SEPLAA.

SEPLAA Representatives will keep updating the website on a regular basis and so urged the members to keep retuning to it for updates and follow up of events.

WEDNESDAY, FEBRUARY 10, 2010

Press Conference to discuss SEPLAA’s Position Paper on Compulsory Blood Screening

Launch of the Health Awareness Drive ‘Save a life, save a generation’

On 10th February, 2010    

SEPLAA’S Position Paper  on Compulsory Blood Screening

February, 2010:

  • We urge the people of Pakistan to acknowledge the health risks involved with inter- marriages. The highest numbers of people at risk to transfer a hereditary or contagious disease in Pakistan are people in the NWFP.
  • At least 10 per cent of Pakistan’s population or one in every ten persons is a thalassemia minor carrier.
  • At this estimated rate, the number of thalassemia cases will be doubled to over 200,000 in the next 10 years.
  • There are 5,000 to 6,000 thalassemia babies born every year.
  • The estimated birth rate of thalassemia-affected children is 1.3 per 1,000 live births.
  • Pakistan has more than 1,50,000 thalassemia major cases.
    The national exchequer incurs an expenditure of approximately Rs 130,000 per thalassemic child annually.
  • These are only estimated numbers, the actual numbers (including the unreported cases, the deaths following birth and the cases involving other blood disorders such as enzyme deficiencies) are much higher.
  • We need to educate people in the urban cities first that getting one’s blood screened for thalassemia traits or HIV and Hepatitis C is not a matter of ‘shame’ but of ‘social responsibility’.
  • We urge the provincial governments to allocate a separate budget for compulsory blood screening of all men and women at the time of the making of the National Identity cards in order to control the increase in the cases of thalassemia, Hepatitis C and HIV.

Press Conference to launch website and health awareness drive ‘Save a life, save a generation.’

Press Conference held at the Lahore Press Club

On 10th February, 2010

The Seeds of Education, Policy & Legal Awareness Association (SEPLAA) held a press conference at the Lahore Press Club on the 10th of February, 2010 to officially launch the website of SEPLAA. The Conference also highlighted the first awareness drive of its kind in Pakistan ‘Save a life, save a generation’, seeking to control inter marriages or marriages with cousins which can pose health risks.

Speaking on the occasion, Mrs. Ammara Farooq Malik, the President of SEPLAA remarked, ‘At least 10 per cent ofPakistan’s population or one in every ten persons is a thalassemia minor carrier. At this estimated rate, the number of thalassemia cases will be doubled to over 200,000 in the next 10 years.’

Mrs. Farooq further stressed, ‘’ We urge the people of Pakistan to acknowledge the health risks involved with inter- marriages’ adding ‘ The highest numbers of people at risk to transfer a hereditary or contagious disease in Pakistan are people in the NWFP.’

To a question raised by the media, Mrs. Ammara Farooq Malik explained that SEPLAA is a not for profit think tank which is an activist organization in creating awareness. ‘We hope that some day, through our efforts, we will make the concept of premarital blood screening so common in Pakistan that it will be considered a routine matter as it is in all the civilized countries of the world and even in most Muslim states such as Iran, Saudi Arabia and Malaysia.’

Also present on the occasion were Mr. Hassan Awais Wyne, Treasurer of SEPLAA, THE Secretary General Ms. Zahra Wyne and Ms. Saman Jaffer, another Founding Member and Head of Event Management at SEPLAA.

SEPLAA representatives while later talking to the media, expressed their concern that  the figures quoted are onlyestimated numbers as the actual numbers of thalassemia cases and deaths due to hereditary blood disorders (including the unreported cases, the deaths following birth and the cases involving other blood disorders such as enzyme deficiencies) are much higher.

In the end, the President of SEPLAA urged the provincial governments to allocate a separate budget for compulsory blood screening of all men and women at the time of the making of the National Identity cards in order to control the increase in the cases of thalassemia, Hepatitis C and HIV. ‘Not only will this step ensure that everyone will know whether they are carriers of the disease but this information can also prove useful at the time of accidents’.

“We need to educate people in the urban cities first that getting one’s blood screened for thalassemia traits or HIV and Hepatitis C is not a matter of ‘social taboo’ but of ‘social responsibility”, said Mrs. Ammara Farooq. SEPLAA representatives later expressed that they hoped to not only create awareness through the media, publications and educational institutions but intended to train other social workers to be able to counsel prospective marriage couples before they decided to tie the knot.

As a concluding remark the representative added, ‘At SEPLAA, we seek to transform public opinion through research, dialogue, discussions and creating awareness amongst the youth, academia, media and concerned citizens so that one day these principles will become ascendant and replace public opinion which over looks the basic and most fundamental needs of our society.’