Patients and advocacy groups are calling for stronger policy support and improved treatment access for idiopathic pulmonary fibrosis (IPF), saying awareness of the rare lung disease remains low despite its severity.
“Despite the severity of idiopathic pulmonary fibrosis, social awareness and policy support remain insufficient,” Kim Shin-yong, a patient with IPF, said during a roundtable discussion hosted by Boehringer Ingelheim Korea last Friday.
Kim Shin-yong (right), a patient with idiopathic pulmonary fibrosis, speaks during a roundtable discussion hosted by Boehringer Ingelheim Korea. (Courtesy of Boehringer Ingelheim Korea)
Kim said IPF affects nearly every aspect of daily life through symptoms such as shortness of breath, physical limitations and emotional distress.
He added that although treatments including Ofev (nintedanib) are available to slow disease progression, barriers to treatment access still make it difficult for some patients to begin therapy at the appropriate time.
Participants at the event also said awareness remains low even among high-risk groups, despite the fact that interstitial lung diseases -- including IPF -- include more than 200 rare diseases.
Lim Yoo-soon, president of the Korea Penguin Society, a group of patients with rheumatoid arthritis, said about 30 percent of interstitial lung disease cases are associated with rheumatic diseases such as rheumatoid arthritis.
“Although rheumatoid arthritis patients are exposed to the risk of severe complications, awareness remains insufficient,” Lim said.
Park Jung-sook, secretary-general of the Korea Blood Disease and Cancer Association, said patients with interstitial lung disease often face difficulties accessing information as well as psychological, financial and lifestyle burdens associated with long-term care.
Jung Jin-hyang, secretary-general of the Korea Organization for Rare Diseases, noted that IPF has a lower five-year survival rate than many major cancers and records one of the highest mortality rates among rare diseases.
“Despite this, access to treatment is still not adequately guaranteed,” Jung said, adding that institutional discussions including broader insurance reimbursement coverage are needed.
Kim Kyoung-Won
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