Early passing of pre-marriage mandatory Thalassemia testing law demanded

May 15, 2010

Courtesy by: allvoices.com

Karachi: Over 11.6 million people have Thalassemia Minor in Pakistan while the country houses over 100,000 Thalassemia Major, a life-threatening disorder of the blood that is completely hereditary, the journalists were informed at Karachi Press Club at a press briefing by head of a major Blood Bank demanding early legislation of law to make pre-marriage Thalassemia testing to help reduce the fatal disease.

This was stated by the Chief Executive Officer of one of the biggest and most trusted Husaini Blood Bank, Asad Ali. Flanked by Deputy Speaker of Sindh Assembly Ms. Shahla Raza; provincial Minister for Jails Haji Muzaffar Shijra; provincial Labor Minister Ameer Nawab; central leader of Pakistan Muslim League (Nawaz) Syed Hafeezuddin; Naib Ameer Jamaat-e-Islami Meraj-ul-Huda, Secretary General of Pakistan Tehreek-e-Insaf and leader of Jamiat Ulema-e-Islam Rahman Syed Mumtaz Haider, said that despite the unanimous passage of the resolution moved by Haji Muzaffar Shijra the law to make pre-marriage Thalassemia testing was not yet passed in to a law to help bring down incidence of Thalassemia Major. “While Thalassemia Minor is common and those who have it live a normal life the probability of having this totally hereditary disease shifted to children of couples having it is resulting in pushing Thalassemia Major in the country.”

The journalists were informed that in many countries in Pakistan’s neighborhood like India, Saudi Arabia and Iran have made legislation that makes pre-marriage Thalassemia testing mandatory to help reduce Thalassemia Major incidence. However, the failure to make law has pushed Thalassemia incidence to dangaerous levels that undermines the very health of the nation.

The speakers said that if an adult Pakistani make a habit of donating just one bottle of blood a year it would help totally eradicate the acute shortage of blood in the country which stands at around 7,600 bottles a day. The journalists were also informed that each year around 6,000 babies are born in the country with Thalassemia Major and they need around 25-30 bottles of blood each year to keep alive.

The speakers also demanded that a column should be added in the Nikahnama (marriage registration certificate) to certify if a bride or a groom has Thalassemia Minor because marriage of Thalessemiazed parents almost certainly mean that one of the four children born to them would have Thalassemia Major, two from Thalassemia Minor and that only one could be a normal child.

The speakers requested the media representatives to help create the much needed awareness to understand the harming consequences of marriage of Thalassemia Minor because it poses grave risks to their children.

The press briefing coincided with the World Thalassemia Day which is celebrated on May 8 every year.


Minister of Health Inspects Pre-marriage Central Lab in Sharjah

May 15, 2010

Courtesy by: wam.org.ae

WAM Sharjah, 1st May 2010 (WAM) — His Excellency Dr. Hanif Hassan, UAE Minister of Health, inspected the pre-marriage central lab in Sharjah and viewed the functions of the laboratory tests and its preparations for receiving and operating modern equipments to be provided to the laboratory in the near future.

He was accompanied by Dr. Salem Al Darmaki, Acting Director General, Dr. Mahmood Fikri, Executive Director for Health Policies and Ahmed Al Nuaimi, Acting Director of Primary Healthcare Central Administration.

He was briefed about the progress of work in the laboratory and the required services for pre-marriage test results in order to avoid infectious and genetic diseases as well as the reviewed steps starting from receiving samples, drawing conclusions and identifying the development sizes of equipments and devices in addition to the future plans of upgrading the services of the laboratory.

“We assure the importance of correcting misconceptions among the public about genetic diseases and emphasize our efforts in answering their questions in a scientific and credibility manner through clinical testing and counseling. The Ministry also seeks to implement the goals of the program in order to help society members avoid physiological, financial and physical burdens for having children with genetic diseases”, His Excellency elaborated.

Furthermore, Dr. Nora Al Suwaidi, Director of pre-marriage tests at the Ministry of Health, emphasized the importance of pre-marriage tests as they prevent more than 60% of congenital malformations and 100% of genetic diseases such as thalassemia and cell anemia.

Dr. Al Suwaidi stated that the tests reduce transmission of infectious diseases from one member to another through early detection and treatment and protect the fetus from these diseases too. Unfortunately, such diseases may lead to either the death of babies, mental disabilities or birth defects. Hence, the costs of caring for these children are approximately AED 3 million during his/her lifetime.

The adopted tests at the central laboratory include: genetic blood disease including blood type; rhesus factor disease, beta thalassemia, cell disease, hemoglobin in addition to other infectious and sexually transmitted diseases such as: AIDS, viral hepatitis B, viral hepatitis C, sexually transmitted diseases between spouses (syphilis), and immunization against German measles for women.

Furthermore, Dr. Mahmood Fikri, Executive Director for Health Policies at the UAE Ministry of Health, explained that the services provided by the testing program include information about genetic family medical history, blood tests, counseling sessions for needed cases and other information vaccinations especially German measles and hepatitis B.

He said: “There are 10 centers or clinics which provide testing services all over the UAE. We are also working on the addition of new advanced equipments to the central laboratory and provision of integrated services in order to establish it as a referential center for genetic diseases tests in the country”.

Dr. Fikri added that the program trains medical and technical staff of the testing and counseling clinics on the methods of conducting personal interviews with couples wishing to get married and making the necessary medical tests. “In future time, all testing centers will be connected electronically with a direct link to the Ministry of Health and health authorities in Abu Dhabi and Dubai”, he concluded.

Statistics of the Center for Arab Genomic Studies for November 2007 indicated that the number of genetic diseases in the UAE reached 240 diseases of which: 82 caused by inbreeding marriages, while 26% of the relative marriages are of first degree. The testing procedures and medical tests approved by the UAE Ministry of Health contributed to the detection of some cases that could have led to unexpected genetic diseases yet they have been treated positively and the marriage steps have been completed.

According to the latest statistics between January and December 2009, around 19.285 people of which 10.956 locals conducted the pre-marriage tests. The tests indicated that 1113 local and expatriate cases were discovered as genetic blood diseases including: beta thalassemia, anemia, E,D and C hemoglobin differences and other blood diseases.


All you want to know about stem cell banking

May 15, 2010

Courtesy by: Mumbaimirror.com
Among the many decisions would-be-parents have to take, whether or not they should preserve their child’s cord blood cells is one such major decision they have to take. Here is some info which will let you decide whether this breakthrough in regenerative medicine works for you.

What is stem cell therapy?
Stem cells are nothing but master cells that regenerate and turn into cells that form tissues, organs and systems. These cells are undifferentiated or blank cells that do not have a specific function. Each stem cell has the potential to become another cell with a more specialised function. Also serving as a kind of repair system for the body, stem cells can divide repeatedly and then differentiate and replenish cells damaged by the various life-threatening diseases.

How effective is it?
The cord blood stem cells can be used to cure about 70 odd illnesses. Banking stem cells present in your child’s umbilical cord is particularly beneficial to treat blood-related genetic diseases. Now the benefits of this therapy are being assessed on lifestyle disorders like arthritis, heart ailments and diabetes. In fact, banking cord blood cells can also help treat siblings and other family members provided they are compatible with the individual seeking treatment.

Sagar Gopal, a resident of Chembur opted for cord stem cell banking for his little one on February 7 this year. “I heard about cord stem cell banking from a friend of mine. After doing the necessary research I realised that cord stem cell banking will be beneficial because a lot of research is on its uses. I think by taking this small step I have secured my child’s life against several life threatening diseases,” says Gopal.

Sources
Stem cells can be derived from various sources such as the bone marrow, embryos obtained by in vitro fertilization, amniotic fluid, umbilical cord blood and menstrual blood.

Bone Marrow – The bone marrow is an extremely rich and the earliest known source of somatic stem cells. Drawn from the spongy tissue found in the centre of bones, the main function of these stem cells is to make blood cells that circulate in our bodies and fight infection.

Umbilical Cord – The other rich source of stem cells is the blood left over in the umbilical cord and placenta of a newborn child. Till recently, this blood was often discarded as medical waste. However, now that umbilical cord blood is known to be a rich source of stem cells, more people are choosing to bank these cells for its potential future use.

Menstrual blood – Menstrual blood too is a rich source of stem blood cells. The advantage of this is that tissue collection can be done easily at home with the help of a menstrual cup. Also the person does not need anaesthesia and the process involved is inexpensive too. However, there is a risk of contamination so the collected sample has to be sterilised within 48 hours and stored at a temperature of -200 degrees.

Advantages of deriving stem cells from umbilical cord as compared to other sources
Removing stem cells from the umbilical cord is simpler. Usually the umbilical cord that connects the foetus with the mother is cut at the time of delivery and discarded. However, in this technique, the blood remaining in the umbilical cord that is full of stem cells is separated and stored in stem cell banks. These stem cells are similar to those found in the bone marrow and have already been used to treat leukaemia (blood cancer).

Mayur Abhaya, executive director of Life Cell, a stem cell bank in India, states, “The advantage of banking stem cells through the umbilical cord is that cord blood’s chances of matching are 20 times higher. Using cord blood cells mean that it has a lower rejection rate by the body.”

How is it stored?
As of now there are three private stem cell banks in India. These include the one run by Reliance in Mumbai, CryoCell stem bank run in New Delhi and Life Cell run in collaboration with Cryo-Cell International, USA in Chennai.

You can now preserve your newborn’s cord blood at any bank for a payment of Rs70,000 for 20 years.

However, the American Academy of Pediatrics (AAP) does not recommend private cord blood storage unless a family member has a medical condition that might be helped by stem cell transplant. The conditions include leukaemia, lymphoma, neuroblastoma, sickle cell anaemia, thalassemia. Instead, AAP urges parents to donate the cord blood cells to a bank for general use by public.

BOX
Across the world, stem cell transplants have been used since the 1960s to treat a variety of diseases such as: Acute Leukaemia, Histiocytic Disorders, Inherited Immune System Disorders, Combined Immunodeficiency Inherited Metabolic Disorders, Inherited Platelet Abnormalities, Refractory Anaemia (RA), Plasma Cell Disorders, Research on for Alzheimer’s Disease, Cardiac Disease, Diabetes, Multiple Sclerosis, Muscular Dystrophy, Parkinson’s Disease, Spinal Cord, Stroke


Emirates Central Cooling Corporation organises blood donation campaign

March 31, 2010

Courtesy by: bi-me.com

Emirates Central Cooling Corporation (Empower), the largest district cooling service provider in the region, held its fourth blood donation campaign in aid of children suffering from thalassaemia and other blood conditions recently under the aegis of Dubai Blood Donation Centre of Dubai Health Authority.

A significant number of volunteers donated blood as part of the company’s corporate social responsibility. The donated blood will go towards helping “Thalassemia” patients as well as others in need of blood.

Some 154 persons donated blood during the event. Students from high schools put up an entertainment program for the donors. All the donors, sponsors and volunteers were recognised with certificates of appreciation, gifts and prizes.

Ahmed Bin Shafar, CEO, Empower said: “The primary aim of establishing Empower was preserving the environment and to give our children a better life with natural resources.

This campaign will help meet the continuous need for blood supplies in Dubai. Empower is keen to continue such initiatives which reflect its firm commitment to society.”

Blood donations plat a crucial role in saving the lives of many, particularly children suffering from thalassaemia, who normally need repeated blood transfusions, in addition to many others who are being treated for other serious diseases.

The response was unprecedented and donors have already signed for Empower’s next Blood Donation Campaign expected to be held in/around August 2010.

The campaign was held with the help of sponsors, including Mohammed Bin Rashid Establishment for SME Development, Dubai Healthcare City (DHCC), Transgulf Electro Mechanical, Mario Associates, Gea Ecoflex, Technical & Trading Establishment, Union National Bank, Al Zarooni Electo Mechanical, Mezbaan Hyderabad Restaurant, Jeema Mineral Water (PSC) and AECOM Ellerbe Becket.

Blood transfusion is a vital aspect to combating “Thalassemia”, a genetic blood disorder that affects a person’s ability to produce haemoglobin, resulting in severe anemia.

Bin Shafar added: “Empower has always been at the forefront of organising such community focused campaigns.

We thank all the Empower employees and members of the public, who came forward to assist Thalassemia patients.”


A long but successful journey of Kerala’s blood disorder patients

March 31, 2010

Courtesy by: twocircles.net

They traveled three thousand kms by train taking three days and two nights to reach NewDelhi, the capital city of India. One of the main motivations behind this journey was 4th International Conference on Thalassemia which took place on 31st October and 1st November 2009 at Hotel Intercontinental Eros New Delhi. Actually they came to New Delhi not for attending the conference. They couldn’t speak or understand English or Hindi, the national language of the country. Most members of them were Thalassemia afflicted patients and their parents. Some were other blood disorder patients like Sickle cell anemia, Hemophilia, Applastic anemia and Leukemia.

Kerala is a small state with 3crores of population in utmost southern part of India. Kerala is not only a role model state in health services in India but also a complete literacy state in the nation. In the tourism map it is known as God’s own country. In Kerala near about fifty percent of population belong to Hindu religion community. Above 20% are Christians and above 25% are Muslims. The communist ideology is ruling this small state in alternative five years term getting elected by the people for last 25 years. Rest of the period after Independence has been ruled by the Indian National Congress. The communal fabrication with social amity and the peaceful social life is the salient feature of this small state. No space here for communal violence or hatred in the name of religion, caste or creed.

One of the major achievements in health sector is the low child mortality rate. But this phenomenon rises the morbidity rate of children same as the developed countries. But unlike the developed countries Kerala has no facilities to prevent or to avoid this like morbidity rate by using new technologies like antenatal diagnosis. These pathetic situation causes to rise various kinds of hereditary disorder disease like Thalassemia, Sickle cell anemia, Hemophilia and different kinds of birth defects. In Wayanad, a hill district of Tribal people in north Kerala alone, about five thousand persons are suffering from sickle cell disease among the tribal. Twenty thousand carriers among the tribal are the major threat in the health sector in the future years in hereditary disease.

Even though the prevalence of blood disorder patients is very high in north Kerala especially in Malabar region no sufficient facilities are available in hematology check up and no service of hematologist in this state.

Blood Patients’ Protection Council (BPPC) is an organization of acutely blood disorder patients like Thalassemia, Hemophilia, Leukemia, Sickle cell anemia and their parents have been fighting for the better treatment, life saving drugs and vital right of these patients for the past fifteen years. For achieving the birth right of patients many agitations were organized like road blockade including a state Secretariat march by traveling 800 km by BPPC. But the Govt. took a stubborn position against the patient’s demand. That was the one reason compelling the patients to travel to New Delhi by declaring a parliament march.

They raised slogans demanding better treatment and life saving drugs for acutely ill patients and demonstrated towards the Indian parliament on 29th October 2009. The patients raised 10 point demands including the set up of an antenatal screening facilities at Calicut medical college hospital where depends 1.5 crore people for better treatment in Malabar area and some part of Karnataka and Tamil Nadu state. Near about 100 blood disorder patients and their parents took part in the parliament march. Delhi police blocked their march with barricade at Jantar Mantar, New Delhi. The march was organised by BPPC under the leadership of Kareem Karassery, the General Convener of BPPC.

Tom Vadakkan, Secretary, Indian National Congress, the ruling party of India inaugurated the march. After the march, the participants rushed to All India Congress Committee Office New Delhi. Patients and their parents expressed their grievances and the miseries due to lack of expert treatment, life saving drugs and other ill feelings before the eminent leaders and office bearers of the ruling party (AICC) of India.

Dr. Shakheel Ahmed spokesperson of the ruling party addressed an elaborate press conference with the blood disorder patients and their parents from Kerala at AICC office. AICC Secretary Tom Vadakkan was also present in the crowded press conference. Dr. Shakheel Ahmad assured the acutely ill children and their parents from Kerala that the Govt. of India and the health and family welfare department will take urgent step to solve the 10 points demand raised by BPPC Kerala. They would bring the matter before the president of the Congress party Sonia Gandhi, central health Minister Gulam Nabi Azad and AICC gen. secretary Rahul Gandhi immediately. Only after achieving the assurance from the ruling party head quarters the patients and the parents returned from there.

The following day patients visited all monumental and significant tourism places in Delhi with their parents. They also visited Indian Parliament. Some office bearers of BPPC were delegates of the International Conference on Thalassemia at Hotel Intercontinental Eros. Due to the medium of conference and instructions was English/Hindi rest of the members of this team couldn’t register or attend the conference and same day they went to Agra and visited the Taj Mahal, one of the seven wonders of the world and other world heritage monuments like Agra Fort and well known pilgrimage center like Madura Temple etc. This journey was very pleasant for the children who are suffering with fatal diseases, especially for school going students. Parents also enjoyed this trip as great relief and relax from their painful fate of prolonged life.

On 2nd October 2009 all patients and their parents were attended in the Thalassemia clinic at Sir Gangaram hospital which was constituted by the part of International conference on Thalassemia for the registered patients. But most of our patients or their parents were not registered in the conference. Yet, Dr. V.K. Khanna, Head, Department of Hematology, Sir Gangaram hospital agreed to check up all patients even in the busy day.

The patients got a thorough check up and well medical advice from the clinic. Ms. Shoba Tuli, vice president of Thalassemia International federation helped for facilitating the check-up. Dr. P.M. Kutty, President, Malabar THAS Society, Dr. V.T. Ajith Kumar treasurer of the society also helped to make this check up a reality. The hospital authority served good delicious snacks to the patients. They returned from the hospital after the check up was over with the immense gratitude to the Gangaram hospital especially to Dr. V.K. Khanna. Many Malayalam Language dailies published this news of events with the group photograph of patients with Dr Khanna.

The following day all patients and their parents returned from New Delhi after a week-long tremendous mission and good feelings with significant knowledge to their home state by train. We reached on 5th October without any inconvenience. The journey was good with songs, jokes and dance of children.

When we reached Calicut a letter from Union Health Minister Gulam Nabi Azad reached to Calicut. He said in his letter that he has examined the matter and would get back to us shortly. In another letter sent by the secretary of All India Congress Committee (AICC) Rama Chandra Kundiya, MP, mentioned that Sonia Gandhi, President, AICC, forwarded the application submitted by BPPC to the health minister.

Along with these responses a breakthrough occurred in the health field of Kerala.

Ms. P.K. Sreemathi, health minister of Kerala declared that all acutely ill patients below eighteen years of age will get free treatment from Jan 2010 without considering their income. Besides, central health minister informed the local MP M.K. Ragavan that he sanctioned Rs 3 crore for the development of oncology department at MCH, Kozhikkode with immediate effect. The annual central budget allocated a considerable amount for the development of public health sector.

Blood disorder patients and their parents believe that the multi-purpose journey to New Delhi was not in vain. They are expecting more from the Central and State Government.

(Kareem Karassery is General Convener, Blood Patients’ Protection Council, Malabar Zone, Kerala, India, and can be contacted on 9447019182)


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