The charity project “The right medicine for you” quietly implemented by Thien Tam Foundation (Vingroup) and GeneStory for nearly a year has just been honored in the “Ideas for the community” category at the Action Awards ceremony. Human Act Prize on the evening of December 11, 2023.
Launched in February 2023, the “Right Medicine for Children” Project is a free genetic screening program for adverse reactions of epilepsy drugs for children in difficult circumstances, undergoing treatment or having risk of epilepsy. Thanks to that, doctors can know whether drugs used to treat pediatric epilepsy patients have the risk of causing serious adverse reactions, so they can prescribe correctly and reduce the burden of medical costs on disadvantaged households. . Drug reactions when using inappropriate epilepsy drugs are very severe reactions, often requiring immediate emergency treatment and causing serious impacts on the patient’s health as well as a high cost burden for the healthcare system.
As of early December 2023, more than 2,500 children from more than 50 provinces and cities have received free genetic testing. Of these, nearly 25% of cases received positive results, equivalent to about 620 children who were protected from the risk of adverse reactions to epilepsy drugs, bringing peace of mind to hundreds of families.
GS. Vu Ha Van, President and Founder of GeneStory (2nd from left) received the award at the Community Action Awards ceremony on the evening of December 11, 2023.
From the obsession called “carba-phobia” to the motivation “the right medicine for you”
In the treatment of epilepsy, the first-line indication in the regimens is carbamazepine (CBZ), because this drug is relatively cheap. However, according to clinical statistics, this is a drug with a potential risk of causing Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN) which can lead to death. Adverse reactions to CBZ are so common that doctors have used the phrase “carba-phobia” to refer to the “fear” of using this drug.
Studies on the project Sequencing 1,000 Vietnamese genomes of the Big Data Research Institute (Vingroup) have shown that: 1 in 4 Vietnamese people using CBZ will be at risk of serious adverse reactions. important. This rate is typical for Vietnamese people and is much higher than the world average, specifically 17 times higher than Europe. At the same time, people carrying the HLA-B*15:02 gene have a 200 times higher risk of SCAR due to CBZ than people who do not carry this gene, while up to 25% of Vietnamese people carry this gene.
It was from the above milestones that the idea of ”The right medicine for you” was born. “Because we know, the above risks can be completely prevented early and effectively with just a genetic test.” – General Director of GeneStory – Mr. Nguyen Duc Long said.
GeneStory’s idea for children in difficult circumstances undergoing treatment or at high risk of epilepsy received a commitment from Thien Tam Foundation, Vingroup.
The project has also convinced the Scientific Councils and deployed it at 05 front-line public hospitals including Central Children’s Hospital, Children’s Hospital 1, Thai Binh Pediatrics, Nghe An Obstetrics and Pediatrics and Da Nang Obstetrics and Pediatrics.
It is expected that by the end of this year, 3,000 children will be equipped with a lifetime “Gene profile for safe drug use”, not only related to epilepsy drugs but also nearly 200 other drugs (in the treatment of epilepsy). cough, flu, heart disease…) that you may have to use in your life.
Vietnamese DNA samples are extracted and decoded right at GeneStory’s international standard laboratory, located in Vietnam, licensed by the Department of Health to operate.
“The right medicine for you” or the goal of preventive medicine for everyone
Not only stopping at epilepsy drugs, world recommendations or Genestory’s research on the Vietnamese genome have shown that there are many drugs that Vietnamese people carry the risk of adverse reactions or do not respond to. levels higher than those in the world, such as drugs to treat gout, cardiovascular disease…
Ms. NA (Hanoi) has a 2-year-old child with transfusion resistance while being treated for Kawasaki disease (an acute form of vascular disease), leading to coronary artery dilation and requiring the use of the antithrombotic drug clopidogrel. However, after nearly 2 months of treatment, the baby still has not achieved a stable blood index. After doing a genetic test and receiving the results that the medicine the baby was taking was contraindicated for the baby’s genotype, the doctor changed the medicine and the patient responded well to the new medicine.
GeneStory provides more than 200 traits for disease risk and drug response, physical and mental health, personality and career orientation.
The case of Ms. NA’s child is just one of the typical cases of the effectiveness of drug response gene testing. According to Dr. Vo Sy Nam – Director of Science and Technology and co-founder of GeneStory, in our country, drug response tests – which are necessary to ensure patient safety before treatment – are still difficult to access. , especially for patients without economic conditions.
“While in Europe, America, Singapore… there are recommendations for drug use for their people’s genotypes, in Vietnam, I believe that only Vietnamese people can solve the problem of safe use. own medicine, with the help of genetic decoding.” – Dr. Nam shared. According to Professor Vu Ha Van, co-founder of GeneStory, using Vietnamese data to solve problems for Vietnamese people is the main idea for GeneStory’s activities as well as the Big Data Research Institute.
Currently, GeneStory is preparing the scientific foundation, human resources, and social mobilization to continue the project “The right medicine for you” in 2024, expanding the scope of screening to other groups such as cardiovascular diseases (such as cardiovascular diseases). the case of the baby with Kawasaki disease mentioned above), or cancer treatment for children and disadvantaged people in society.
With that great social significance, the project “The right medicine for children” was honored at the Human Act Prize Award Ceremony.
Representatives of the charity project “The right medicine for you” took a commemorative photo after the award ceremony.
“The Human Act Prize is a driving force to help us be more confident on the path we have chosen. However, 3,000 children is just the starting number and we need to make a lot of extra efforts to have the right medicine.” for everyone”. Our goal is a preventative medicine for Vietnamese people, where disease risks can be predicted and prevented before they form, and everyone can live healthy and safe lives. Every child can develop to their full potential.” – Mr. Nguyen Duc Long emphasized.
Information box: GeneStory, formerly the Biomedical Information Center, part of the Big Data Research Institute, is a pioneer in the application of gene decoding to health care, providing lifelong personal genetic records up to up to 200+ indicators of drug response ability, disease risk prediction, physical, mental, and personality tendencies as well as potential and career orientation for children…