Empowering Hope: NHSO Urged to Enhance Treatment Benefits for SMA Muscle Weakness Disease Sufferers

The “SMA Patient Network” sent a letter to “Somsak” proposing to promote complete and equitable access to medicines. Point out that even expensive medicine Can not be completely cured But at least he is not dead. Somsak promised to set up a working group to look into the issue.

On November 4, 2024, the network of patients suffering from myasthenia gravis (SMA) went to send a letter toMr. Somsak Thepsuthin Minister of Public Health (MOPH) and Chair of the National Health Security Committee (NHSO Council) at the National Health Security Office (NHSO) before the NHSO Council meeting no. 12 (5)/2024 to request consideration of the package benefit increase. Under the National Health Insurance System (Gold Card 30 baht) in case of treatment of patients suffering from SMA, which is a rare disease in children.

The SMA patient network was born from the collection of patients and their parents affected by the disease. Promote the issue of medical services for SMA patients together with medical personnel. and various related bodies Including creating awareness about the disease. and access to disease screening in the early stages of the target group Especially children with SMA, which is a rare disease. And it also comes at a high cost. Have equal access to essential medicines

Mr. Amnat Phumala A representative from the SMA Patient Network revealed that the network was responsible for sending the letter today. There has recently been a push towards the benefits of the treatment for SMA patients. In addition to following the development of various benefit packages starting in 2023, it was found that adding additional benefits for SMA patients has not been considered.

Therefore, I have come to propose that the Government, the Ministry of Public Health, the Ministry of Social Development and Human Security (Ministry of Social Development and Human Security) and the NHSO Board consider adding a series of advantages in the 30 baht gold card system. , covering everything from carrier screening in pregnant or pre-pregnant women and their husband. This includes support for access to necessary medicines, treatments and prosthetics. Provide SMA patients with access to necessary care and receive an equal quality of life development

“In the past, the patient network has collaborated with the Foundation for Rare Disease Patients. They encountered problems accessing medical care services for SMA patients, so they jointly created proposals on health or technology issues through the UCBP system and requested that the NHSO board receive the matter for consideration. To help muscular dystrophy patients in the country, there are more than 250 people and another 20 are believed to have severe symptoms, although there are only a small number of them in Thailand. But he had to suffer the symptoms of the disease. Also, if they don’t get drugs to treat them, they will eventually die,” Mr. Amnat said.

Mr Amnat also said the injectable drug nusinersen, trade name Spinraza, priced at 50 million baht per injection, is a drug using gene therapy. The medicine can be started for children with SMA under 2 years of age. The oral medicine risdiplam, trade name is Evrysdi, is used to treat type 1 and type 2 or 3 muscle weakness. It is sold at 270,000 baht per bottle, i.e. On average, the patient will therefore have to use around 2.5 bottles per month or 30 bottles per year, costing around 8.1 million baht. Therefore, if there is a political mechanism capable of negotiating drug prices, It will be an opportunity for patients to have access to care. But if the medicine is not administered, the symptoms of muscle weakness will be even more severe.

“Medication will help control symptoms so they don’t get worse. and allow patients to continue living and can live a life close to normal But if you don’t get treatment It will impact the government’s budget burden for caring for muscular dystrophy patients. This is ineffective because the treatment is not used and the budget is wasted needlessly on medical expenses. Eventually, the patient will die gradually,” Mr. Amnat said.

Mr Somsak said he would set up a working group to look into the issue. Find ways to access medicines for SMA patients in Thailand, so that patients with rare diseases such as genetic SMA have access to the treatment they need. And there will be further updates on this topic in close collaboration with the muscular dystrophy patient network.