Thalassemia a Major Public Health Issue in UAE, Says Expert

Courtesy by: khaleejtimes.com

DUBAI — Thalassemia is a major public health issue in the UAE, which affects so many families at social, medical and psychological levels, says Dr Erol Baysal, head of Molecular Genetics Unit at the Genetic and Thalassemia Centre 
in Dubai.

One in 12 persons in the UAE is said to be thalassemia carrier. And the centre is the only facility in the country that conducts highly specialised tests to detect traits of thalassemia and offer counselling services to patients and their physicians to deal with the emerging results of the tests.

A total of 10,000 people have undergone premarital tests at the centre since the launch of the service in 2005.

When the UAE government made premarital tests mandatory for legalisation of marriages in the country in 2006, health officials said the main aim of the legislation was to protect the country from having children with different types of hereditary diseases, especially thalassemia which has a high prevalence among UAE nationals due to consanguineous marriages.

Dr Baysal feels the numbers of tests carried out are not to be underestimated. “The premarital screening programme is the most important part of our preventive campaign against thalassemia and these tests entail couples, most of whom are young nationals planning to get married,” he said.

“You cannot have a successful preventive programme without prenatal diagnosis which is the new approach to identify the genetic makeup of a foetus and its chances of being a thalassemia carrier or patient.”

As in the case of every autosomal disease, there is a 25 per cent chance for the child of thalassemia carrier parents to become affected. Another 50 per cent of them could be carriers and the rest could be unaffected, normal children.

This principle has been largely found to be correct in the number of cases diagnosed through prenatal tests, as 28 positive cases have been detected in the 115 cases, said Dr Mahmoud Taleb Al Ali, director of the Genetic Centre.

“The benefit of the test lies not only in early detection of the disease in 25 per cent of cases and helping to initiate early treatment,” said Dr Al Ali.

“It also helps 75 per cent of mothers to have social and financial relief by knowing that they will not have an affected child. Once the test is done, those women do not have to basically suffer for nine months thinking that their babies would be affected. That trauma can also be avoided,” he pointed out.

“If the genetic finding tells us that the baby may not require blood transfusion, you are also saving a life from blood transfusion and related complications,” noted Dr Baysal.

Three specialised labs at the centre – one for DNA analysis, another for cytogenetic tests and the third for analysing patients according to their metabolic features – are run by highly trained experts who conduct genetic tests by examining the sub-atomic levels of genes that cause hereditary diseases.

The genotype analysis, which finds out the genetic mutation that causes a disorder and its physical manifestation among patients, helps in determining the specific type of mutations for different types of thalassemia.

Dr Al Ali said the centre is the only facility in the GCC that carries out prenatal genetic test. “We also have the unique distinction of delivering test results on the same day. There are a very few labs in the world which release reports in 24 hours.”

He said the lab results and genetic information passed on to the treating physicians help the latter take a better and speedy decision regarding patient’s treatment.

The doctors said the government could save millions of dirhams by conducting the prenatal tests locally.

“One will have to spend at least Dh100,000 for getting this test done abroad. This can only go high if there are any associated complications. In that case, when you consider the fact that 50 per cent of our patients are UAE nationals, we can say that the government could save at least Dh6 million in two years by offering the service here in Dubai,” said Dr Al Ali.

Dr Baysal said the centre’s goal is to provide the service to every expecting mother who is at risk of delivering a child with thalassemia.

Call for increased awareness of thalassemia

Courtesy by: theasiannews.co.uk

Despite thalassaemia mainly affecting those of Asian heritage, the vast majority of British Asians admit they have never heard of the potentially fatal genetic blood disorder.

New research shows that nearly two-thirds (63 per cent) have either never heard of the disease or know little about it.
Ignorance is particularly prevalent in the young, with more than seven-in-ten unaware of the disease.

According to the survey, supported by the UK Thalassaemia Society (UKTS), of those who had heard of the condition only half knew that the severe form can be fatal. While carriers of beta thalassaemia are normally healthy, a fifth of survey respondents also admitted there was a stigma attached to being diagnosed with thalassaemia among the Asian community – with a third of people admitting they would hide the fact that they suffered from the disorder and only 55 per cent saying they would tell their family about their condition.

Thalassaemia refers to a group of genetic blood disorders that affect the body’s production of haemoglobin, the oxygen-carrying component of red blood cells. The most severe form of the condition, beta thalassaemia major, can be fatal. Those affected – and there are currently over 700 sufferers in the UK – do not produce enough healthy mature red blood cells, which are vital in carrying oxygen around the body.

If a man and woman who are both carriers have children together, there is a 25 per cent chance with each pregnancy that the baby will be born beta thalassaemia major. An early symptom of this most severe form of thalassaemia is acute anaemia before the age of one.
Those affected then need regular transfusions plus constant medication and monitoring throughout their life to prevent dying from their condition.

Commenting on the research findings, Elaine Miller of the UK Thalassaemia Society said: “It is really quite shocking that awareness of the condition remains so low amongst those most vulnerable to the disorder. We urgently need to address this issue and de-stigmatise Thalassaemia amongst British Asians.”

On learning about the disease, over 90 per cent of respondents called for increased awareness of the condition.

Approximately 214,000 people in the UK carry the gene that passes the condition through the generations, and 79 per cent of sufferers have parents of Indian, Pakistani or Bangladeshi origin – the UKTS are committed to encouraging these groups to visit their GP in order to be tested for the thalassaemia gene.

The All Party Parliamentary Group summer reception for thalassaemia and sickle cell took place on Tuesday (14 July) to highlight the efforts of the UKTS in bringing thalassaemia to the forefront of political activity.
For more information visit www.ukts.org

High judge orders brides, grooms tested for H1N1 before court issues marriage certificate

Courtesy by: maannews.net

Jerusalem – Ma’an – No marriage certificates are to be authorized by Islamic courts in Palestine until both the bride and groom are certified to be “swine flu free,” Chief Justice of Palestine Sheikh Taysir Tamimi announced Tuesday.

Tamimi sent a memo to all courts authorized to issue marriage certificates announcing the latest measure. All couples seeking certicicates will have to undergo Ministry of Health authorized procedures before the certificate will be issued. The top judge said the measure will slow the spread of the epidemic.

“This action is in pursuance of the purposes of Islamic law in the need to conserve the five imperatives: reason and restraint, religion, money, and birth.” He said the courts have a duty to curb the spread of the H1N1 virus.

Prospective couples must already have tests from the Ministry of Health ensuring the are AIDS/HIV free and test negative for Thalassemia, a genetic kidney disease prevalent among southern Mediterranean peoples that leads to kidney failure if untreated. The orders for lab tests for Thalassemia and AIDS/HIV were passed in 2000 and 2001 respectively.

According to Tamimi the orders lead to a dramatic decrease in the incidence of both diseases.

Make thalassaemia test compulsory

Courtesy by: bdnews24.com

Dhaka, May 7 (bdnews24.com)–Call to make thalassaemia screening compulsory in marriage registration came from a group on the eve of World Thalassaemia Day on Friday.

Bangladesh Society of Haematology aired a 17-point charter of demands at a discussion meeting at the National Press Club in Dhaka on Thursday

Thalassemia is genetically transmitted blood disorder that prevents production of haemoglobin, the blood protein that carries oxygen in the body.

According to the World Health Organisation, around 4 percent people are carriers of beta thalassaemia in Bangladesh., said Dr Salahuddin Shah, general secretary of the society. Each year around 6000 children are born with the disease, he said.

Thalassaemia causes iron deficiency in the body like anaemia which can be cured by taking medicine or iron-rich food but it cannot be cured by taking medicine.

Its treatments include regular blood transfusion and bone marrow transplantation, among others.

A person who has one thalassaemia gene is said to have the thalassaemia trait. He remains healthy but can pass the gene on to his children.

If both parents carry thalassaemia trait then the chance of having a child with thalassaemia, then the chance of having a child with thalassaemia trait is 50 percent.

If only one parent carry thalassaemia trait then the chance of having a child with thalassaemia trait is 25 percent and the chance of normal child is 50 percent.

The other demands are introducing haematology department in all government medical colleges, modernising blood banks, setting up DNA lab in at the BSMMU, setting up bone marrow transplantation centre, giving subsidy on medicines used for removing excess iron from the body and forming a thalassaemia federation.

Tourism minister GM Quader put emphasis on starting a social movement for having mandatory thalassaemia certificate in marriage registration.

Prof Md Jamilur Rahman, president of the society, and ABAM Yunus, professor of the haematology at BSMMU, were present also attended.

UAE GDA Urges General Public To Get Screened For Genetic Diseases

Courtesy by: DubaiCityGuide.com

Friday May 8th marks the International Thalassemia Day, a serious genetic diseases that is common in the UAE
In UAE Genetic Disease Association’s (UAE GDA) drive to create awareness about the medical and social impacts of common inherited blood disorders prevalent in our community, such as Thalassemia, Sickle-cell Anaemia and G6PD, GDA has organized awareness campaigns and blood testing campaigns at various locations in the country.

These campaigns fall under the umbrella of UAE GDA’s ongoing project “Emirates free from new births of children with Thalassemia disease by the year 2012”; through this project UAE GDA aims to identify carriers of the most prevalent genetic disorders in the country and limit the number of newborns with this disorder.

To mark the world Thalassemia day, H. E Dr. Mariam Matar, Founder and Executive Director of UAE GDA, said:
“Since the launch of campaign in 2004, we were able to raise the public’s awareness about this disease, and establish the first UAE GDA genetic diseases lab in 2007 with the help of the Ministry of Health, and concerned federal authorities and entities in both public and private sector. Another major accomplishment for the UAE GDA included enforcing the mandatory premarital genetic disease screening”.

While premarital genetic disease screening is compulsory in the UAE, the cost of these tests may vary from hospital to another but are all in the range of 700 AED, UAE GDA’s screenings are conducted for free for all UAE nationals, and for only 50 AED for all UAE residents.

The screening takes approximately 5 minutes and is relatively painless. UAE GDA patients are granted anonymity, and receive their test results on their personal email within 10 days. Depending on the diagnosis, GDA provides the needed medical help.

Since the launch of the screening campaigns, UAE GDA has successfully screened 7000 individuals and hopes to screen an additional 4000 individuals by the end of the 2009, As part of its strategy, UAE GDA hopes to conduct 30000 screenings by the year 2012.

UAE GDA is organizing round the clock awareness campaigns this year to reduce the impact of the most common inherited genetic blood disorders in the community. The association has already conducted screening in 15 of the UAE’s universities and colleges. GDA has also conducted screening in 16 public and private organizations and bodies, such as exhibitions and organizations such as National Bank of Abu Dhabi Bank, Emirates NDB , Du Telecom, Aswaaq Centre in Nadd el Hammar, and Emirates Post.

“Our activities include promoting health education, screening for genetic disorders, pre-marital screening and genetic counseling. The UAEGDA also facilitates communication and publication of scientific knowledge, to promote education and research in genetics, and encourages interaction between workers in genetics and those in related sciences” said Dr. Matar.

With better knowledge of the genetics of various diseases, testing for the underlying defects with the use of biochemical and molecular techniques is increasingly possible. UAE GDA is fully-equipped with state-of-the-art technologies, mobile units and specialists.

It is worth mentioning that Thalassemia is the result of a genetic defect leading to severe shortages in the production of particular proteins in the blood “globins’”, which is the main component of the haemoglobin found in red blood cell. According to the last study conducted, 1 in 12 people in the UAE carrys a genetic disease gene, we are facing a high risk of developing specific genetic disorders, if both parents are found to be carriers, the risk of passing on the genetic disease increases with each pregnancy. This is UAE GDA’s awareness is concentrating on individuals in premarital stages.”

The practical aim of these screening tests is the prevention and treatment of genetic diseases and blood disorders, they can save lives and reduce pain and suffering. ” added Dr. Matar. Dr. Matar called upon those interested in screening themselves to register at the UAE GDA website: http://www.uaegda.ae/newclient.html

Middle East Healthcare Sector should focus more on Genomic Medicine and Cellular Therapies

Courtesy by: Zawya.com

High percentages of consanguineous marriages in the Middle East result in high incidence of genetic diseases as well as high incidence for predisposition to genetic diseases.

Medicine is changing with two major revolutions: Genomic Medicine and Cellular Therapies. Genomic revolution in Medicine has created greatest possibilities for prevention and cure of chronic diseases. Our increasing knowledge on the genetic mechanisms reveals that not only the diseases inherited from the parents but all diseases are “genetic” said Prof. Dr. Ender Altiok, Managing Director of GENETIKA. Prof. Dr. Altiok will participate to speak at the 2nd Inherited Haemolytic Anaemia Update Course and Workshops on 4^th of May 2009 in King Abdulaziz University, Jeddah / Saudi Arabia, which is organized by Saudi Haematology Society.

GENETIKA is Acibadem Healthcare Group’s Genetic Diagnosis Center and Treatment Center, the largest genetic center in Turkey and one of the largest genetic laboratories in Europe by 250 different genetic tests done by using modern genetic testing methods including more than 20,000 diagnostic DNA sequencing every year. GENETIKA provides well equipped and modern facilities for the diagnosis and prevention of human genetic disorders. GENETIKA gives genetic service to all around the world including United States, Canada, Denmark, India, Egypt, Saudi Arabia, Syria, Spain, South Africa, Romania, Azerbaydcan. Some genetic tests in the world are done only by a few laboratories including Acibadem ( for example: griscelli, osteopetrosis, osteoimperfecta genetic tests). GENETIKA is member of EMQN (European Molecular Genetics Quality Network) and is listed in official sites of NIH ( National Institutes of Health)( www.geneclinics.org),  EDDNAL, Eurogentest ( EU official). GENETIKA is the  first and currently only Cell Processing laboratory in JACIE (Joint Accredidation Committee of International Society Cell Therapy  and European Bone Marrow Transplantation Society) accreditation process in the Eastern Europe and Middle East.

The genetic casualty can be one step or in multi steps.  The treatment and rehabilitation for these increasing numbers of diseases require high financial and human sources thus imposing enormous burden on the healthcare system.  Molecular medicine lead by molecular genetics could contribute to the prevention of genetic conditions and to reduction of the healthcare costs. Genetic counselling followed by carrier testing and prenatal testing for genetic disorders are effective ways to prevent such disorders. In recent years pre-implantation genetic diagnosis (PGD) is also possible. With PGD, before any pregnancy, the embryos are obtained from the couples and selected against disease in the family and transferred to the candidate mother. If pregnancy occurs, the baby has the maximum chance to be normal. In this way termination of the pregnancy can be avoided.

Medicine is also heading for the age of cellular therapies. Cellular therapies offer the chance of transplanting a living source for regeneration of organs.  The diseases that could not be prevented may be treated by transplantation of normal cells. A genetic condition can be treated with normal cells from a donor. For example thalassemias and more than 40 conditions have been treated with stem cells for more than 35 years. The stringent requirements for stem cell therapies are stem cell sources like bone marrow and cord blood. Because of this reason stem cell banking is crucial.  In recent years cellular therapies have   been being developed for conditions like Multiple sclerosis, urea cycle defects and even for anti aging therapy.  Embryonic stem cell banking and embryonic stem cell based therapies may carry  therapeutic achievements further ahead if  technical, ethical and legal regulations can be done.

GENETIKA incubates a Cell Processing Laboratory and Stem Cell Banking Units at cGMP (Good Manufacturing Practice) standards. The laboratory process and stores stem cells from a variety of sources including cord blood, peripheral blood and bone marrow from transplantation purposes as well as for other cell therapies. The laboratory has processed close to 5000 units of cord blood and  hundreds of  units of PBSC ( peripheral blood stem cells)  for both autologous and allogenic transplantation purposes.

Noor Islamic Bank to organize second blood donation drive

Courtesy by: ameinfo.com

Noor Islamic Bank PJSC today announced it has expanded the scope of its second Blood Donation Drive to include donors from the public as part of a country-wide programme to raise awareness on Thalassemia.

Staff and visitors will donate blood from 9.00am to 2:30pm at the Bank’s headquarters in Emaar Square, Building-1 on 29 April.

The campaign, to be held with the support of Dubai Department of Health and Medical Services, is part of the initiative to support the UAE’s programme of eradicating the disease in the country by 2012.

Hussain Al Qemzi, Group CEO, Noor Islamic Bank, said:

‘Thalassemia is a serious blood disorder that affects one in 16 Emiratis each year. It is a condition that is not confined to the sufferer alone, but affects the entire family as well. At Noor Islamic Bank, we are committed to playing our role in not only raising awareness about this genetic condition, but also lending our support by donating blood to organizations that help patients and their families.’

The blood donation drive is part of the Bank’s corporate social responsibility programme that supports community needs including special needs, breast cancer and charity initiatives.

The Blood Donation Centre in Al Wasl Hospital will receive the blood. The Centre performs various humanitarian duties such as providing blood for several Thalassemia children who are in constant need of transfusion every three to four weeks. The donations will also be used by cardiology patients who have undergone open heart surgeries, those suffering from leukemia and patients with other blood disorders.

Thalassemia is a genetic blood condition that is inherited by children from their parents. The condition limits the patient’s ability to produce enough haemoglobin in the blood. Children born with Thalassemia usually develop symptoms of severe anaemia within their first year.

VN successfully develops pre-implantation genetic diagnosis

Courtesy by: english.vietnamnet.vn

VietNamNet Bridge – Local scientists have successfully researched pre-implantation genetic diagnosis of human embryos, announced Secretary General of the HCM City Reproductive Endocrinology and Infertility Association (HOSREM), Ho Manh Tuong.

In the early 1990s, American scientists began researching and were successful in pre-implantation genetic diagnosis of human embryos. The research aims to avoid abortions during the pre-antenatal examining period through the early discovery of foetuses with malformations.

This technique has been applied widely in the world, including Southeast Asian countries like Thailand, Malaysia and Singapore.

There are around 300-disease related genes that can be detected by pre-implantation genetic diagnosis. Pre-implantation genetic diagnosis to discover thalassemia disease is promising in Vietnam.

In early 2009, the project was approved by the HCM City Science and Technology Department. This is a municipal scientific project conducted by scientists of the HCM City Medical and Pharmaceutical University, HOSREM and the Van Hanh Hospital.

HORESEM’s Tuong said that after the project is checked and taken over, the technique will be transferred to big hospitals.

Relatives marry despite risks to children

Courtesy by: middle-east-online.com

Closely-related couples in Syria are choosing to marry even when blood tests detect genetic conditions.

DAMASCUS – When she turned 17, Nagham Salahiya’s parents announced that they had found a good husband for her – her first cousin.

The couple went to a private clinic for a mandatory pre-marital blood test, which revealed that they both carried a recessive gene for thalassemia, a potentially fatal genetic blood disorder that could affect any children.

Nonetheless, they decided to go ahead with the wedding and married in January this year.

“My family set up this match and it would have shamed them if I refused the man they picked for me,” said Salahiya. “I am clinging to the hope that all our children will be born healthy.”

Dr Ghassan Qanatri, head of a doctors’ association in Idlib in the northwest of Syria, reckons that consanguineous unions between cousins account for between 35 and 50 per cent of all marriages. Syria’s health ministry gives a lower figure of 20 per cent for marriages involving close relatives, a definition that includes first and second cousins.

Whatever the precise figures, Dr Qanatri says there is a close correlation between such marriages and the incidence of birth defects, although accurate statistics on the prevalence of genetic diseases and their link to consanguineous marriages are thin on the ground.

Last year, a law was introduced requiring couples to produce a medical certificate before they can be legally married. This was aimed at lowering the prevalence of hereditary diseases, particularly blood disorders such as thalassemia and sickle cell anaemia.

Although a couple can still marry if the results show that one or both partners has a genetic condition, Dr Qanatri said the test means they are aware of it and of the potential consequences for children they may have.

In the case of thalassemia, if both parents are carriers of the recessive gene, there is a 50 per cent chance that their child will also carry the gene and a 25 per cent chance that he or she will develop the condition.

“Blood disorders such as thalassemia are painful, crippling, life-long diseases that currently have no cure,” said Majid Yaziji, director of the Thalassemia Centre in Idlib city. “Patients require regular blood transfusions and extensive, ongoing medical care.”

He added “the only way to detect the presence of the trait is through a blood test called haemoglobin electrophoresis.”

While couples can go to any medical centre for genetic testing, the health ministry has also opened 20 “marriage clinics”, one or two in each of Syria’s 14 provinces.

Plans are under way to open these clinics in every major Syrian city, said Yaziji.

Marriage clinics and government hospitals charge 43 US dollars for the test, while private hospitals charge up to 170 dollars.

Many couples still choose to marry even when they discover they could pass on genetic disorders.

Nadia Bakri, 16, and her first cousin, Muhsin Bakri, 32, decided to marry even after blood tests from Yaziji’s centre revealed that they both carried the gene for sickle cell anaemia.

In the past six months, Nadia has had two abortions after foetuses tested positive for the blood disorder in prenatal tests.

A fatwa issued by the World Islamic League in 1990 says that Muslims may undergo abortions up to 120 days after conception if an unborn child tests positive for a serious disorder.

“Thousands of other Syrian couples face the same heartbreaking choice as Nadia and Mushin,” said Yaziji. “Mushin was very angry on both occasions, and would yell at our doctors when they tried to tell him he’d been warned about the increased likelihood of these diseases.”

Yaziji said societal and family pressure on couples to marry in spite of the medical risks lead many people, particularly men, to bribe doctors to alter the test results.

“I forged a medical report for my brother stating that our family is free from hereditary diseases,” said Um Ahmed, a nurse at a hospital in Al-Raqqa, northeast of Damascus.

“There are no specific penalties in place so it’s very easy to do,” she added.

Hasan Kherbik, a lawyer from Latakia, is calling for new legislation which would mean medical employees caught altering test results would be punished.

“The government will never prevent outright two cousins from marrying each other, but there should be laws against doctors who alter these medical reports,” said Kherbik.

“Maybe the couple will decide to go ahead with the marriage [regardless], but they should at least know what they are getting into first.”

Meanwhile, experts say that inadequate testing can mean that couples given a clean bill of health later find that they are in fact carrying genes with a risk of hereditary disorder.

According to Qanatri, couples who want more thorough testing may have to travel a long way and be willing to pay extra at a reputable clinic with better facilities.

“There are hereditary diseases that cannot be detected with the tests we are administering at most private hospitals and clinics,” he said. “Hereditary testing is expensive and only the handful of newly-created marriage clinics have the necessary equipment.” (IWPR)