Hematology Society of Thailand and Pediatric Hematology and Cancer Unit Chulalongkorn Hospital, Thai Red Cross Society joins a press conference with a panel discussion on the topic of preventive treatment guidelines for patientsBleeding easily (Hemophilia ; hemophilia) for relevant agencies to realize the importance of accessing preventive treatment approaches (Prophylaxis treatment) for Patients with easy bleeding (Hemophilia) and campaigning for the general public to be aware of the difficulty in daily life of patients with haemorrhage. Access to effective treatments can help both patients and caregivers happily coexist with bleeding disorders. can do various activities close to common people and have a better quality of life
Who is at risk? “hemophilia”
hemophilia More than 99% found in male patients by Prof. Dr.Polphat Rotnakarin President of the Hematological Association of Thailand Refers to the current situation of hemophilia that hemophilia is Bleeding easily but hard to stop although not often found But it’s becoming more and more common, according to the World Federation of Hemophilia (WFH). Currently, the global proportion of hemophilia cases is 1:5,000 in the male population.
while foundHemophilia patients in the Thai population 1st place: 13,000-1:20,000 of the population or about 1,828 people divided into
- patientHemophilia A Of 1,645 people, there were 743 patients under 18 years old, accounting for 46%, while over 18 years old, 872 people, accounting for 54%.
- patientHemophilia B Of 213 people, 106 were younger than 18 years old, accounting for 50%, while 107 were older than 18 years old, accounting for 50% (reference).
Can Hemophilia Be Treated?
From the statistics of the treatment of hemophilia patients in Thailand, it was found that Only 2% of all hemophilia patients receivedpreventive treatment Currently, preventive treatment is the standard treatment recommended by the World Hemophilia Federation.reduce the rate of natural bleeding That causes life-threatening if it occurs in important organs such as the brain, internal organs, which are important locations. if there is bleeding
How severe are the symptoms of hemophilia?
On the side of Assoc. Prof., MD.Darin Sosothikun Head of Pediatric Hematology and Cancer Department of Pediatrics Faculty of Medicine Chulalongkorn University said,Hemophilia is an inherited disorder.through the X chromosome in a mannerrecessive genes Caused by a lack of protein that helps in blood clotting, divided into 2 types: Hemophilia A caused by factor 8 protein deficiency and Hemophilia B caused by a lack of factor 9 protein.When the wound bleeds, the bleeding doesn’t stop. Because the body lacks protein that helps stop the blood. More than 99 percent of hemophilia cases are found in males. The disease is very difficult for patients, both physically and mentally. including family very much The patient himself had to be in and out of the hospital often. Without proper treatment, it will have long-term effects on the patient.
forA group that is severe, even dormant. If not affected, it may bleed spontaneously.naturally
But the fear of hemophilia is that if there is bleeding in the internal organs such as in the joints, in the muscles, it may result in joint disability or muscle atrophy in the future, or if bleeding occurs in the brain, abdomen, gastrointestinal tract. It could also be the cause of death.
Treatment guidelines for hemophilia
As for the current treatment guidelines, Assoc. Prof. Darin stated, “There are two types of treatment guidelines for hemophilia: one Treatment when bleeding (Episodic treatment) is an injection after a bleeding episode. This is an approach that is not very effective in the long term. Compared to other treatment approaches, two preventive treatment (Prophylaxis treatment) is an injection to prevent bleeding easily. By giving the patient a factor injection 1-2 times a week or a non-factor injection about 1 time per month. to replace the missing factor to reduce the severity of symptoms
This preventive treatment has been found to be very useful. It helps to increase the quality of life of patients to be able to use their daily lives like normal people. reduce the number of bleeding episodes (refer : Carcao M, Berg HM Van Den, Gouider E, Khair K, Baarslag MA, Bagley L, et al. Chapter 6) and reduce the risk of diseases related to joints and bones and prevent or reduce the risk of bleeding in the brain
How to take care of yourself for hemophilia patients
forHow to care for hemophilia patients? Assoc. Prof. Darin suggested that “some patients misunderstand. I think that when sick with hemophilia to stay still. because there is a chance of bleeding will just sit which is not correct Because it will make the muscles around the joints not strong, the muscles may be atrophy. The more the consequences are.should exercise appropriately because it will make the muscles around the joints stronger”
The cost of treating hemophilia
Currently, the treatment of this disease NHSO. listed in the benefit package canreimbursement of treatment expenses making access to treatment easier If the patient comes to follow up on treatment continuously will be able to withdraw the factor to continue treatment at home
Dr.Krit Leethongin Advisor to the National Health Security Office (NHSO) said, “NHSO recognizes the importance of quality of life for Thai people. especially the right to treat hemophilia Since it is a genetic group since birth, NHSO has managed to manage the system for treating hemophilia over a period of 10 years. According to the service list called Fee Schedule, it takes care of both outpatient and inpatient treatment, medicine, and home care. which the patient can withdraw the factor to use for injection at home when having symptoms in the hospital center There are currently 53 service centers.
“The main principle of treatment is medication to prevent bleeding. And sometimes this group of patients, even with preventive medications. But there may be an accident. Bleeding these costs We try to take care And now the NHSO is working with the Society of Hematology. and received the basic principles for considering non-factor preventive treatments included in the benefit package for hemophilia patients. We have a process to determine if it is worthwhile to treat. to provide patients with more access to essential medicines Each year we will have a committee to help consider new drugs. that is beneficial to the patient if agree We will set a budget for the next budget. We try to drive new technology. New things that will improve the quality of life of Thai people According to the guidelines that we have always adhered to, that we will not leave anyone behind, Dr. Krit said.