Law on Compulsory Thalassemia Test for Grade 9 Students Urged

May 31, 2009

Courtesy: khaleejtimes.com

DUBAI — Health officials have called for legislation making thalassemia 
test compulsory for Grade 9 students and its inclusion in the curriculum
 as a subject.

They have also sought provision of uniform treatment methods across the emirates. Thalassemia is a genetic blood disorder and affects one
 in 12 Emiratis.

A survey done in Dubai in 2006 revealed that only 45 per cent of the 6,400 respondents were aware of
 the disorder.  “This is the reason why we have drawn up recommendations that are being put up to the Minister of Health for action,” said Saeed Jafar Al Awadhi, financial manager and member of Emirates Thalassemia Society.

“We are expecting a legislation to take shape in two years,” he added.

The Ministry of Health, Emirates Thalassemia Society and the Thalassemia Centre in Al Wasl Hospital are pushing the recommendations.

The recommendations also call for making compulsory premarital blood testing measures more stringent and raising awareness about the need for blood  donation.

“Grade 9 students are old enough to understand the need for testing and can also be educated on the disorder through a subject,” said Al Awadhi, explaining why the experts were pushing for testing in G9 students.  “They are old enough to take their own decisions.”

“Educating them on the complications that a child born to a thala-minor couple may make them cautious in choosing their life partners,”
he  explained.  A school health official said that though medical tests were being carried out on school children, none of them tested for thalassemia.

“Tests are done on G1, 5 and 9 students but we only do a complete blood count,” said  Dr Fawzia Al Jeziri, director of School Health, Ministry of Health. “If a child has a low blood count, he is sent for further testing,” she says, adding that a thalassemia-only test will detect the disorder early on. As prevention, the UAE laws call for compulsory pre-marital testing for national couples. However, since the law came into effect two years ago, only two couples called off their marriage after both were discovered with thalassemic traits, said Al Awadhi. “Most couples are bypassing this rule and may get their marriage certificates registered in emirates that are lax in their rules,” said Al Awadhi.


Rally brings thalassemia into focus

May 5, 2009

Courtesy by: expressbuzz.com

HYDERABAD: An awareness rally that was held at Charminar on Sunday to generate awareness about the effects of Thalassemia and Sickle Cell abnormalities, saw considerable participation from enthusiastic members of the pubic and curious bystanders alike. The rally was flagged off by Principal Secretary to the Ministry of Health and Medicine, L V Subramanyan. The march was organised by The Thalassemia And Sickle Cell Society, Hyderabad.

The key issues covered at the event included the need for adequate blood transfusion, donor facilities and ‘leuco- depleted blood’, which is required by Thalassemia patients.

The society announced that at present, the Government is considering providing essential medicines for affected patients at subsidised rates, along with making HBA2 test mandatory at the pre-martial state in the near future.

Presently, the Society provides aid and support for affected patients and their families by way of medical consultation, transfusion, check-ups and counselling.


Thalassemia Day: Gujarat has 7,000 patients

May 3, 2009

Courtesy by: gujaratglobal.com

Gujarat Global News Network, Ahmedabad

The state government’s programme to conduct thalassemia tests in the universities has proved to be a major flop show. In the last four months tests have been done on less than 5 percent students. This is despite the fact that thalassemia is increasing at a fast rate and Gujarat alone has nearly 7,000 patients.

Thalassemia is a common genetic disease. It can be detected by blood test only. A child starts losing haemoglobin by 12 months and has to be given blood transfusion frequently throughout his life. Blood transfusion alone does not solve the problem. This also causes iron deposition which may lead to organ failure and consequently death of the patient. To deal with this iron is removed by expensive iron chelation injections.

In India every year nearly 10,000 children are found with thalassemia. Though various NGOs and some medical organizations have been conducting programmes about the disease, lack of awareness is still a major problem which has resulted in rise in number of patients.

May 8 is World Thalassemia day and on the occasion city based Thalassemia Jagruti Foundation has organized an entertainment programme for the patients. Secretary of the foundation Dr. Anil Khatri said that lack of awareness is the major reason for this disease. Though it is genetic and is found more in some communities.

Ahmedabad alone has nearly 1,000 thalassemia patients which are increasing every year. Blood transfusion is a costly process and at times risky too. He said that there are five patients in the city who have developed HIV infection after transfusion.

The foundation and other NGOs have made representations to the government for providing financial assistance to thalassemia patients. The response is good, that is what Dr. Khatri has to say when asked about the steps government had taken. The government has given approval to a proposal for free travel to thalassemia patients in ST and AMTS buses. It is likely to be implemented in a month.

The Red Cross Society is conducting thalassemia test programmes in various colleges throughout the state. But the response of the students is poor, Prakash Parmar, Progamme Manager Red Cross society said. He said that in Ahmedabad there are nearly 75,000 college students and only 5,000 have undergone tests.

Wagh Bakri group is actively involved in prevention of thalassemia.


UAE To Make Medical Tests Mandatory For School Students

March 16, 2009

Courtesy by: bernama.com

ABU DHABI, Nov 12 (Bernama) — The United Arab Emirates (UAE) government will make medical tests mandatory for students during their enrollment process in schools, the Emirates news agency (WAM) quoted a local newspaper Khaleej Times as reporting on Wednesday.

The mandatory tests, which will include blood and urine tests, are part of the Health Ministry’s school health program to detect and prevent diseases among children at an early age, said the report.

The ministry’s decision to make the tests mandatory firstly in public schools results from the fact that diseases such as anaemia, diabetes and thalassemia go undetected for years until they become full-blown cases, Fawzia Al Jaziri, a senior official with the ministry, was quoted as saying.

The official added that “the tests will be conducted during the time of admission among children of kindergarten 1, again when the child enters grade 5 and finally in grade 9.”

According to the official, the tests will be handled by the school doctor or nurse.

If a serious case is detected, it will be forwarded to a primary healthcare center while the school doctor or the nurse will be required to maintain a regular follow-up with the parents regarding proper treatment and medicine for the student.

The schools will be required to train teachers to deal adequately with such children.


Mandatory thalassemia testing urged in Pakistan

March 14, 2009

Courtesy by: smartbrief.com

Dr. Sarfraz Hussain Jafri, vice president of the Thalassaemia Federation of Pakistan, is urging the government to pass a bill pending in parliament that would mandate thalassemia testing prior to marriage. Jafri said the move would reduce the cases of the disease among children, citing the success in Iran and Cyprus in initiating preventive measures for thalassemia.


‘Preventive measures can eradicate thalassemia’

March 14, 2009

Courtesy by: TimeofIndia

AHMEDABAD: If there is will, there is a way. On World Blood Donation Day on Wednesday , Indian Red Cross, Ahmedabad (IRC-A ), has shown the way that the deadly thalassemia can be eradicated!

In an ambitious project undertaken in 68 villages in Sanand taluka of Ahmedabad district, IRC-A screened 2,100 pregnant women and detected 131 couples who were thalassemia minors, which means they were both carriers of the disease and there was a greater risk that their newborn could be thalassemia major!

“We counselled the couples and they readily agreed to get the foetus aborted. This way, in the last five months, we have prevented birth of a thalassemia major child,” said IRC-A president Mukesh Patel.

It needs mention that of the 10,000 thalassemia children born in the country, 10 per cent children are in Gujarat. This rate is very high, especially in five communities namely Sindhis, Lohanas, Kutchis, Bhanushalis and Muslims.

“Every year, the parents of thalassemia patient cough up Rs 1 lakh for blood transfusions and iron chelation treatment. If there are 1,000 thalassemia children in Ahmedabad , the parents spend over Rs 10 crore annually on the treatment. This is a huge financial burden. Moreover, one cannot calculate the pain suffered by the child and his/her parents,” Patel said. IRC-A has adopted around 700 children and provide them free blood for transfusion.

IRC-A spent Rs 20 lakh on the project that covers on an average 2 lakh people . If the state government takes up this project, it will have to spend Rs 50 crore for 5 crore population.

“We have just shown that prevention of thalassemia is possible. If the state government replicates this project on a large scale, the cost can be brought further down,” Patel added.

IRC-A authorities said that as part of the silver jubilee celebrations of its Thalassemia Care Awareness Prevention (CAP) mission, they have decided to make a dedicated effort towards eliminating thalassemia from the state.

“Unlike cancer and other lifestyle diseases , thalassemia is a genetic disease and can easily be prevented. All it requires is awareness,” said honorary secretary Mahesh Trivedi.


200 Screened for Thalassemia as Dubai Properties Group Partners with UAE Genetic Diseases Association for Health Initiative

March 14, 2009

Courtesy by: Zawya.com

Dubai – Dubai Properties Group, a member of Dubai Holding, recently held a voluntary blood screening drive for its employees to test against commonly inherited blood disorders prevalent in the UAE, aiming to raise awareness on general health risks.

The screening exercise stems from DPGDPG’s corporate responsibility (CR) unit ‘Mubadara’, in support of the national health campaign ‘Emirates Free of Thalassemia 2012’ – the first project of the UAE Genetic Diseases Association (UAE-GDA).

Established under the patronage of His Highness Sheikh Nahyan Bin Mubarak Al Nahyan, Minister for Higher Education and Scientific Research, the UAE-GDA was launched by Dr. Maryam Matar, Executive Director, to tackle public health concerns and related issues for creating a healthy community.

Fareda Abdullah – Executive Director of Human Capital at Dubai Properties Group, said: “Contributing towards the welfare of our employees and the UAE at large is one of the key pillars in Mubadara’s CR initiatives. We organized an internal blood screening drive to educate our employees about the risks of genetic blood disorders, as we believe self-awareness is the first step towards eliminating diseases. We also seek to endorse the enormous efforts invested by the UAE Genetic Diseases Association in its fight against Thalassemia and Sickle Cell Anaemia.”

Dr. Maryam Matar said: “We would like to thank Dubai Properties Group in supporting and increasing awareness of UAE-GDA’s efforts to eradicate Thalassemia in the country by 2012. The UAE-GDA has been able to considerably reduce the impact of common genetic disorders prevalent in the country through its community outreach programmes, health education, counselling and free screening tests.

Mohamed Binbrek, CEO, Dubai Properties Group, said: “Dubai Properties Group will always endeavor to take on the best actions for its employees both professionally and personally, in our efforts to be a responsible member of the community.”

In line with the UAE federal government’s vision of eradicating Thalassemia by 2012, Dr. Matar has welcomed the support of Dubai Properties Group in raising awareness on the syndrome among community members.

Thalassemia is a hereditary blood disorder characterized by defective production of hemoglobin, leading to low production and over-destruction of red blood cells. The clinical severity of Thalassemia varies greatly depending on the exact nature of the genes that a person inherits. The severe type of Thalassemia is terrible and debilitating disorder to live with.

As the CR arm of DPGDPG, ‘Mubadra’ was established last year to contribute towards the overall benefit of the society through participating in community related activities, particularly those that serve to highlight the UAE’s well-being programmes.

Founded on four core pillars, ‘Mubadara’ seeks to invest in the people at Dubai Properties Group, the environment, community and the stakeholders. Since its launch, the programme has facilitated the implementation of several CR programs for the benefit of a large number of stakeholders.


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