They made the right moves to beat odds and triumph

May 31, 2009


NEW DELHI: Kanav Aggarwal probably visited his doctor more often than his school. But when he scored 81.8% in his class X Boards on Friday, his
parents and teachers were pleasantly surprised. Kanav, a student of Salwan Public School (afternoon), suffers from thalassemia. Three years ago, he also fell prey to ostoeporosis.

However, the 15-year-old continued school in between his blood transfusion sessions. “I could go to school only three or four days in a week. But my teachers and parents helped me,” said Kanav, who got 45 minutes extra to complete his paper. “We took up Kanav’s case with CBSE so that he could get extra time. Kanav was ready to study at odd hours and our teachers were there to give him extra classes,” said his school principal Rima C Ailawadi.

According to his mother Ritu Aggarwal, Kanav’s schooling was a tough challenge. “Kanav wants to become a scientist or animator. We thought he would have to take commerce but now that he has scored well, we may let him take science,” she said.

Kanav is not alone. Kanika Saxena from Apeejay, Pitampura, scored 80.2% in the class X Boards against all odds. She cannot walk because of spinal muscular atrophy and is wheelchair-bound. But she is also a chess player with an international ranking of 165. She said she managed to score well without any coaching at all. “I studied under difficult circumstances. I lost my father in October last year. In December, my grandfather died. It was very important to keep myself motivated,” she said. Added her mother Archana: “The school helped with facilities like a ramp. She also got an hour extra in the Board exams.”

At Tagore International School, Vasant Vihar, four visually impaired students of class X Rinku Shekhawat, Indira Rawat, Awayamber Singh and S Shankar Reddy managed to score above 70%.

Law on Compulsory Thalassemia Test for Grade 9 Students Urged

May 31, 2009


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.

Awareness Drives Not Successful Yet

May 31, 2009


The Thalassemia Centre at Al Wasl Hospital saw at least 300 new cases last year, says Dr Essam Dohair, who is also the coordinator at the centre. “We already have a 100 per cent occupancy rate and 450 patients at the centre require regular blood transfusion (at least once in a month),” he said.

Patients at the centre require 16,000 units of blood in a year for transfusion.

“We need similar treatment and education methods across the emirates,” said Dr Dohair, adding that the centre also receives patients from the across the GCC.

Ruling out expansion, the centre has no option to meet the needs of the patients, the expert said.

“Treatment is already expensive and expansion means more spending on beds and staff,” he added.

Awareness and education is the key to prevention, he pointed out.

StemCyte, Inc. Reaches 1,000th Cord Blood Stem Cell Shipment for Transplant Milestone

May 31, 2009


COVINA, Calif., May 28 /PRNewswire/ — StemCyte, Inc., a privately held cord blood bank and stem cell therapeutics company, recently released their 1,000th cord blood stem cell shipment for transplant. This marks another landmark in the company’s rapid growth as one of the world’s leading providers of quality, prescription cord blood stem cell product.

(Photo: )

StemCyte will announce this major milestone at the 7th Annual International Umbilical Cord Blood Transplantation
Symposium in Los Angeles June 5-6, 2009.

“When StemCyte was founded in 1997, there were not even 1,000 cumulative cord blood transplants
worldwide. I am especially proud of the progress we have made during this time,” says Dr. Robert Chow, StemCyte Founder.

StemCyte has now provided prescription cord blood product to over 180 transplant centers worldwide in five continents and is a trusted name among transplant physicians. With both public and private banks in the U.S., India and Taiwan, StemCyte has emerged as a global leader in cord blood banking.

Cord blood stem cells have become a viable option to treat a variety of illnesses including leukemia, lymphomas, Autoimmune diseases and Genetic Blood disorders such as Thalassemia sickle-cell disease.

“With over 20 years of human safety and efficacy data, umbilical cord blood stem cells
are emerging as a prime source of stem cells for the field of regenerative medicine, which is the repair of injured tissues, nerves and organs. Research and clinical studies are increasing at an incredible pace and this will result in the treatment of some of the most devastating diseases. StemCyte’s large library of HLA typed product as well as our experience and expertise in this field will position us very well to take advantage of these emerging therapies,” explains StemCyte’s CEO Ken Giacin.

In 2008, StemCyte, Inc. signed two research and licensing agreements for human umbilical cord blood stem cell treatment for spinal cord injury, stroke, multiple sclerosis, Alzheimer’s disease, Parkinson’s disease, ALS, and other problems of the central nervous system. The initiatives are being developed by Professor Wise Young M.D., Ph.D. at Rutgers the State University, New Jersey and Professor John Lin M.D., Ph.D. at China Medical University Hospital, Taiwan.

About StemCyte

StemCyte, Inc. is a global leader in stem cell therapeutics with a marketed umbilical cord blood stem cell transplantation
product. The company’s proprietary plasma-depleted cord blood stem cell products have been used to cure hundreds of patients with life-threatening diseases. With its partners, StemCyte is actively involved in the development of new umbilical cord blood-based cell therapies and has the largest clinical study for using unrelated cord blood transplantation for thalassemia, one of the most common genetic diseases in the world. The company operates one of two, and the only commercial cord blood bank in the world, dually accredited by AABB (formerly the American Association of Blood Banks) and Foundation for the Accreditation of Cellular Therapy (FACT). StemCyte is the only private company contracted by the Federal Government to establish a National Cord Blood Inventory. For more information, visit

Beta Thalassemia Testing

May 31, 2009


G7 HPLC Analyzer Beta-Thalassemia Testing Mode Provides HbF and HbA2 measurement and Hemoglobinopathy Screening

South San Francisco, CA (TOSOH) May 26, 2009 — Today, the measurement of hemoglobin A1c (HbA1c) is widely performed as a routine test using automated High Performance Liquid Chromatography (HPLC) with a short assay time. HPLC testing ( instruments are no longer solely dedicated for HbA1c testing. They are also used for HbF and HbA2 measurement and hemoglobinopathy screening.

Tosoh launched the Beta-thalassemia testing mode on the G7 in 2002 to provide high separation quality at an analysis time of 7.5 minutes per test. The G7 beta thalassemia testing mode quantifies HbF and HbA2 and provides presumptive identification of hemoglobin variants that cause hemoglobinopathies. The identification of hemoglobinopathy carriers is crucial since children born to these parents have a 25% chance of acquiring the disease.

The G7 HPLC Analyzer uses non-porous ion-exchange HPLC for rapid, accurate, and precise separation of the hemoglobin fractions. Analysis is carried out without any off-line specimen pretreatment. Separation is achieved by utilizing differences in ionic interactions between the cation exchange group on the column resin surface and the various hemoglobins and hemoglobin components.

Due to the increase in immigration of different ethnic groups, it is becoming more important to diagnose disorders of hemoglobin chain synthesis. Alternative methodologies for adequate presumptive identification usually require a combination of at least two techniques, one qualitative and one quantitative. Tosoh’s G7 beta thalassemia testing ( mode is the methodology of choice in today’s laboratories because you can efficiently obtain both qualitative and quantitative information at the same time.

For more information on Tosoh G7 HPLC Analyzer for HbA1c and Beta thalassemia testing, go to Tosoh Bioscience at

HemaQuest Initiates Clinical Trials in Sickle Cell Disease and Beta Thalassemia

May 31, 2009


Venture-backed Firm Seeks Safe and Effective Therapy for Common Life-threatening Genetic Disorders of Hemoglobin

05.27.2009 – SEATTLE – HemaQuest Pharmaceuticals announced today that it has initiated clinical trials of HQK-1001 in the treatment of patients with sickle cell disease and beta thalassemia. These two clinical trials are intended to evaluate safety and provide proof of concept clinical data in patients with these serious and life-threatening chronic illnesses.

“Our team is excited to have the opportunity to work with some of the leading clinical investigators to test HQK-1001 in sickle cell disease and beta thalassemia,” said Ron Berenson, M.D., President and Chief Executive Officer of HemaQuest. “There is a pressing need for new drugs to treat these disorders, which cause significant morbidity and early mortality. The goal of our clinical trials is to have sufficient data to move HQK-1001 into advanced clinical studies.”

Each of these blinded, placebo-controlled studies will assess the safety of HQK-1001 and evaluate indicators of therapeutic activity, including several measures of fetal globin, one of the drug’s primary targets. Increases in fetal globin correlate with improved clinical outcomes in patients with these hemoglobin disorders. The trial in sickle cell disease is being conducted at approximately 10 centers in the U.S. The trial in beta thalassemia is being conducted in Thailand, where there is a high incidence of this disease.

To date, HQK-1001 has been evaluated in 55 healthy human subjects in 2 clinical studies. In the first study, 24 subjects were treated with single doses of HQK-1001 at 4 dose levels. The second study was conducted in 41 healthy human subjects, who were treated with 14 consecutive days of HQK-1001 at 3 dose levels. HQK-1001 was well-tolerated at all dose levels and there were no serious adverse effects in the two studies. Plasma drug levels associated with in vitro biological activity were achieved in both studies.

About HQK-1001

HQK-1001 belongs to a class of compounds originally discovered at Boston University and licensed to the company. These compounds, designated as Short Chain Fatty Acid Derivatives (SCFADs), have been shown to stimulate fetal globin expression in the laboratory and in small clinical trials in patients with hemoglobin disorders, including sickle cell disease and beta thalassemia. HQK-1001 is an orally administered SCFAD, which has shown potent effects on fetal globin induction and red blood cell production in the laboratory and relevant animal models. Additionally, the company has received orphan drug designation for HQK-1001 in the United States and Europe for both sickle cell disease and beta thalassemia.

About Sickle Cell Disease and Beta Thalassemia

Sickle cell disease is a genetic disorder affecting the beta globin chain of adult hemoglobin, resulting in distorted, rigid sickle red blood cells, which block blood vessels. The resulting lack of oxygen causes acute episodes of pain (pain crises), lung injury (acute chest syndrome) and is associated with strokes. Chronic damage occurs in many organs. The only drug available to treat the disease is a cancer chemotherapy drug, hydroxyurea, which has potential risks for patients. The lifespan of sickle cell patients is reduced in the U.S, where there are approximately 75-80,000 patients.

Beta thalassemia is a prevalent blood disease worldwide in which patients are unable to produce normal amounts of beta globin, which results in severe anemia. The primary treatment, red blood cell transfusions, leads to iron overload that damages many organs and requires treatment with iron chelating drugs. There is early mortality in patients with this disease is in the U.S. today.

About HemaQuest Pharmaceuticals

HemaQuest Pharmaceuticals, established in late 2007, is a biopharmaceutical company focused on developing small molecule therapeutics based on its proprietary SCFAD technologies to treat hemoglobin diseases. HemaQuest is also developing other SCFADs that could prove useful in treating other hematologic disorders. The company’s investors include De Novo Ventures, Forward Ventures, and Lilly Ventures.

For More Information
Jerome Lyons
T: 206.826.9900
jlyons (at)

Mandatory Thalassemia Test Proposed For Those Intending To Wed

May 31, 2009


TAWAU, May 27 (Bernama) — A paediatrician here has proposed that the government make it mandatory for couples intending to tie the knot to be tested for thalassemia.

Dr Asmiati Abd Hamid, a paediatrician at the Tawau Hospital, said such a ruling was needed to control and prevent this genetic disease from spreading in the society.

She said such test could be carried out just like the mandatory HIV/AIDS test on couples which was currently in practice.

She made the suggestion at the launch of the Tawau Thalassemia Association by Sabah Assistant Finance Minister Datuk Tawfiq Abu Bakar Titingan.

Tawfiq, in his speech, said the government took a serious view of the disease because it was estimated that one in every 20 Malaysians was a Thalassemia carrier.

“Thus, the chances of our being carriers are five per cent. Five per cent is considered too high for a country. If neglected, it will burden future generations,” he said.

Thalassemia is a hereditary form of anaemia caused by faulty synthesis of haemoglobin.

%d bloggers like this: