Doctors Urge Taiwan's NHI to Expand Oral Targeted Therapy Coverage to Adults with Plexiform Neurofibromas
On the first anniversary of NHI coverage for an oral targeted therapy, over 50 children and adolescents with plexiform neurofibromas in Taiwan have benefited. However, the medical community highlights that most adult patients are still denied access to this treatment. Citing the higher risk of tumors turning malignant in adulthood, the Taiwan Child Neurology Society and others are calling for the government to expand coverage to include adults.
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- 📰 Published: May 19, 2026 at 15:41
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One year after an oral targeted therapy was included in the National Health Insurance (NHI) coverage, over 50 child and adolescent patients with plexiform neurofibromas (PN) have benefited. However, the medical community points out that most adult patients still face limited access to treatment. As PN is prone to malignant transformation after adulthood, they are calling for the NHI to expand coverage to adults.
Neurofibromatosis type 1 (NF1) has a prevalence of approximately 1 in 3,000, with about 7,000 patients in Taiwan. 50% of cases are hereditary, while the other 50% result from spontaneous mutations. About 30% to 50% of these patients will develop PN, where tumors can grow over time, compressing surrounding nerves and causing changes in appearance and chronic pain. Lesions appear from birth and grow fastest during childhood and adolescence.
Dr. Chou Yi-Chun, Director of Pediatric Neurology at Linkou Chang Gung Memorial Hospital, stated at a press conference today that the NHI coverage of oral targeted therapy, now in its second year, has provided treatment opportunities for over 50 young patients. Through early intervention, some patients have experienced a reduction in tumor size, decreased pain, and gradual improvement in daily functions, allowing children to return to school and participate in peer activities.
Dr. Lin Kuang-Lin, President of the Taiwan Child Neurology Society, specifically mentioned that while most PNs are benign tumors, there is a risk of malignant transformation. Approximately 10% of PNs can develop into a 'Malignant Peripheral Nerve Sheath Tumor' (MPNST). This malignant change most commonly occurs in adult patients between 20 and 40 years old, making continuous follow-up and regular evaluation crucial.
Dr. Weng Te-Fu, Director of the Pediatric Hematology-Oncology Ward at Chung Shan Medical University Hospital, warned that adult PN can continue to change. Lesions can keep growing, and there is an 8% to 13% chance they will become malignant. Follow-up should not be discontinued in adulthood, especially if a tumor is found to be growing, painful, or changing in texture. Unfortunately, adults are not eligible for NHI coverage for the oral targeted therapy.
Compared to the gradually increasing benefits for younger patients, most adult patients are still limited by challenges in treatment accessibility. The Taiwan Child Neurology Society and the Sunshine Social Welfare Foundation jointly appeal for future policies to continue focusing on the needs of adult patients, progressively improving treatment access and continuity of care. This would allow more patients to receive appropriate support and a more stable quality of life at different stages of their lives.
According to Dr. Weng's clinical observations, adult patients with PN often lose contact with the healthcare system. Reasons include having received medical care as a child but discontinuing it upon growing up, having inoperable symptoms with no available medication, not seeking further medical help, or stopping treatment after no improvement. Growing up does not mean the disease has ended, and adult care should not be overlooked.
Dr. Weng added that pain is the most common clinical manifestation among adult PN patients, with about 32% to 38.4% suffering from it. In fact, it affects not just physical appearance or pain levels, but also daily activities and interpersonal relationships. "Every child with plexiform neurofibromatosis will grow up, but they will never know which day the condition will change their life."
Neurofibromatosis type 1 (NF1) has a prevalence of approximately 1 in 3,000, with about 7,000 patients in Taiwan. 50% of cases are hereditary, while the other 50% result from spontaneous mutations. About 30% to 50% of these patients will develop PN, where tumors can grow over time, compressing surrounding nerves and causing changes in appearance and chronic pain. Lesions appear from birth and grow fastest during childhood and adolescence.
Dr. Chou Yi-Chun, Director of Pediatric Neurology at Linkou Chang Gung Memorial Hospital, stated at a press conference today that the NHI coverage of oral targeted therapy, now in its second year, has provided treatment opportunities for over 50 young patients. Through early intervention, some patients have experienced a reduction in tumor size, decreased pain, and gradual improvement in daily functions, allowing children to return to school and participate in peer activities.
Dr. Lin Kuang-Lin, President of the Taiwan Child Neurology Society, specifically mentioned that while most PNs are benign tumors, there is a risk of malignant transformation. Approximately 10% of PNs can develop into a 'Malignant Peripheral Nerve Sheath Tumor' (MPNST). This malignant change most commonly occurs in adult patients between 20 and 40 years old, making continuous follow-up and regular evaluation crucial.
Dr. Weng Te-Fu, Director of the Pediatric Hematology-Oncology Ward at Chung Shan Medical University Hospital, warned that adult PN can continue to change. Lesions can keep growing, and there is an 8% to 13% chance they will become malignant. Follow-up should not be discontinued in adulthood, especially if a tumor is found to be growing, painful, or changing in texture. Unfortunately, adults are not eligible for NHI coverage for the oral targeted therapy.
Compared to the gradually increasing benefits for younger patients, most adult patients are still limited by challenges in treatment accessibility. The Taiwan Child Neurology Society and the Sunshine Social Welfare Foundation jointly appeal for future policies to continue focusing on the needs of adult patients, progressively improving treatment access and continuity of care. This would allow more patients to receive appropriate support and a more stable quality of life at different stages of their lives.
According to Dr. Weng's clinical observations, adult patients with PN often lose contact with the healthcare system. Reasons include having received medical care as a child but discontinuing it upon growing up, having inoperable symptoms with no available medication, not seeking further medical help, or stopping treatment after no improvement. Growing up does not mean the disease has ended, and adult care should not be overlooked.
Dr. Weng added that pain is the most common clinical manifestation among adult PN patients, with about 32% to 38.4% suffering from it. In fact, it affects not just physical appearance or pain levels, but also daily activities and interpersonal relationships. "Every child with plexiform neurofibromatosis will grow up, but they will never know which day the condition will change their life."