THALASSAEMIA is a genetic disease that interfere with normal red blood cells and blood cells that causes fragile or damaged. This lump sum can produce continuous iron and gathered in several vital organs like heart brain, liver and kidneys.
This resulted in damage to the organ, and at the same time, the patient was pale due to lack of normal red blood cells. This is due to low hemoglobin level and require continuous blood transfusions.
If before this, most thalassemia patients in this country, particularly children, had to deal with difficult moments, including the pain each time taking injections for the treatment of the disease, but after this, they will breathe a sigh of relief when the government will introduce alternative methods of treatment easy. To be implemented by July, treatment with a drug Deeferasirox (Exjade) taken orally is expected to benefit the most optimum thalassemia patients as compared to the old method of using injections of iron chelation agent such
as Desferrioxamine (Desferral). Previously, the method Desferrioxamine injection (Desferral) should be taken for eight to 10 hours a day with treatment frequency of five to six times a week using the infusion pump to bind excess iron. Next followed the process involved in producing pile of iron from the body. However, the method is complicated and painful. It is also possible to bring the risk of complications if they are contaminated during the last injection, thus making a thalassemia patient fails to comply with proper treatment. In this regard, the Government proposes that drugs Deferasirox (Exjade) applies for purposes of treatment 'iron chelation' and it was approved registration by the National Pharmaceutical Bureau in Malaysia in 2008. It is included in the National Formulary Drugs Ministry of Health (Blue Book). However, the use of Deferasirox (Exjade) is expensive, which is a seven-year-old patient with 25 kg of body weight (kg) requires an allocation of RM49, 275 for supplies the drug a year, causing its use was not feasible at that time. Director of the Institute of Molecular Medicine, Universiti Kebangsaan Malaysia (UKM), Prof Datuk Dr A Rahman A Jamal said the use of Deferasirox (Exjade) is more expensive, would have cost three times as against the Desferrioxamine (Desferral). Dr A Rahman said the ministry allocate more funds for the use of Deferasirox (Exjade), a doctor will see more qualified individuals who received treatment based on clinical practice guidelines and the needs of each patient. He is also the Federal Advisory Thalassaemia Association of Malaysia said treatment Deferasirox (Exjade) is expected to be implemented immediately where the doctor can provide treatment for iron chelation 'best for the patients. "This is at once taken to reduce pain during injection Desferrioxamine (Desferral). "However, at present, not all patients will be able to oral treatment and the ministry will limit the number of patients only, "he said. Healthy Dr A Rahman said, even with the introduction of the drug Deferasirox (Exjade), but there will be patients who require a combination of both types of injections and oral treatment for those who rate and critical excess iron in the liver. "Use of Desferrioxamine (Desferral) combined with Deferasirox (Exjade) is to help remove iron more effectively for patients with chronic thalassemia. "Initial use of oral treatments for new cases will help reduce the cost dose depends on body weight, "he said. In the meantime, Health Minister Datuk Seri Liow Tiong Lai said the use of Deferasirox (Exjade) finally can be realized within two months after the ministry obtained allocate approximately RM80.9 million every year, which an increase of RM31.9 million, mainly for the purchase of medicine. "Through this method, patients only need to take one dose per day compared to injection to be taken every eight hours for five or six times a week. "With the implementation of this treatment method also shows the level of medical nation we are getting better and better up to a level that not many other countries that could provide this as expensive drugs, "he said. Liow said that so far, the ministry is negotiating with pharmaceutical companies that manufacture Deferasirox (Exjade) for supply within a month or two months for the benefit of thalassemia patients. However, he said the cost of drugs Deferasirox (Exjade) is high, then the use of prescribed only to patients under the age of eight years, patients who experience serious side effects due to drug use 'iron chelating agents and patients who do not get optimal treatment 'iron chelation'. He said, through an additional allocation of RM31.9 million for the purchase of medical supplies each year, it is expected to benefit approximately 916 pediatric patients with thalassemia, aged between two to seven years and 166 new patients. "Some of these pediatric patients grow up and enter adulthood as a result of improved treatment of thalassemia given by the Ministry of Health hospitals during the period of the child. "Accordingly, the allocation of about RM26.7 million per year needed to meet the needs drug Desferrioxamine (Desferral) and drug Deferiprone (L1) for the treatment of patients with thalassemia 1.646 adults aged 20 years and above. "In addition, it also includes additional provisions Prenatal Diagnostic Laboratory at the Hospital Kuala Lumpur, the strengthening of the Pathology Laboratory services for screening the population at hospital ministry and carry out health education and information dissemination related to thalassemia, "he said. Liow said with the increase in counseling and health education program thalassemia, the number of births that have the disease decreased from 192 in 2004 to 82 in 2009. At the same time, he number of teenagers and young adults who underwent screening for thalassemia to know whether a 'gene' disease also increased from 141.758 in 2008 to 262.236 persons in 2010, thus proving there is increasing public awareness about it. "stage of adolescence is the most suitable for the test for counseling interventions conducted at that age is more effective, "he said. While overall, the number of thalassemia patients registered under the National Thalassaemia Register in 2010 amounted to 4.823 people where all they have got the perfect treatment that includes medication chelators and filtered blood transfusions to maintain the quality of life.
Thanks give Exjade a positive effect on children
THROUGH difficult and painful experience during the charge of an only child who is suffering from thalassemia, making housewives, Zuraini Wan Wan Muda, 35, did not want to have a baby boy the other daughter pet, Nursyafiqah Muhammad Hafiz, 13. Start thalassemia diagnosed since his son was two and a half years, Wan Zuraini acknowledge suffer when witnessing Nursyafiqah moaning in pain every time Desferral treatment using injections of the past eight years. According to Wan Zuraini, Nursyafiqah acquire the disease be due to her husband, Muhammad Hafiz Abdullah, 43, is a carrier of thalassemia. "First, can find out when he saw the face pale and yellowish. Because then we do not know that the government is offering free treatment Desferral, we buy machines and medicines for self-injection to reach thousands of dollars for several months. "But after getting to know that the government is funding Desferral treatment, my daughter continues to get treatment in Kuala Lumpur Hospital twice a month for thalassemia major injection. "However, each time taking the injection, my son would cry for not being able to endure the pain made ​​me depressed," he shared the story with Healthy. Not only that, Wan Zuraini said Nursyafiqah should also be put on machines up to nine hours at night for follow up treatment to cause effects on the body. In fact, his activities at night are also limited when unable to attend tuition classes with other partners when forced to carry out treatment with the machine at night for five times in a week. However, Wan Zuraini said Nursyafiqah suffering along Desferral have treatment ended when his son was selected as pilot patients through medication trials for Exjade method since three years ago. He said the drug Exjade is taken orally every day truly tested when the ion content in the blood decreases in the rate Nursyafiqah high and fast. "I'm really thankful after my son was selected as the initial patients who are able to try this treatment. This is because it is effective to pills only as against the Desferral which can only reduce the ion content in the blood with a low rate. "Besides, my son also was able to carry out activities as other teenagers like to go to tuition classes do not have to use another machine on the night, "he said.