Desperate for a Cure: The Alarming Gap in Treatment Access for Rare and Severe Diseases
Improving Accessibility to Treatment for Severe and Rare Diseases
A Practical Alternative to Enhance Health Insurance Finances
The Korea Association of Medical and Bio Journalists (KAMJ) held a symposium titled “Expanding Treatment Opportunities for Neglected Severe and Rare Diseases” at the National Assembly Members’ Hall on September 11th. The event was co-hosted by Rep. Jin-sook Jeon of the Democratic Party of Korea and Rep. Joo-young Lee of the New Reform Party, both members of the National Assembly Health and Welfare Committee.
Strengthening Accessibility to New Drugs
Kim Gil-won, chairman of the Korean Association of Medical Biojournalists and medical journalist at Yonhap News, emphasized the need to increase patient access to treatment. “Although the government announced the 2nd Comprehensive National Health Insurance Plan in February and presented measures to strengthen accessibility to new drugs for severe and rare diseases, many diseases and treatments are still blocked by the wall of health insurance listing,” he said.
Patient Voices: The Urgency of New Drug Treatments
Patients suffering from severe and rare diseases shared their struggles and the urgency of new drug treatments through their own voices. Lee Dong-wook, who suffers from progressive pulmonary fibrosis, appealed for coverage of a new drug treatment that has been effective in slowing down the decline in his lung function. Kim Gap-bae, a patient with obstructive hypertrophic cardiomyopathy, shared his experience of improved condition after taking a new drug and emphasized the need for coverage to enable young patients to regain their health.
New Drug Accessibility: Challenges and Solutions
Lee Jin-han, Vice President of the Korean Association of Medical and Bio-Reporters, presented on the current status of new drug accessibility in Korea. He highlighted the reality of “Korea passing,” including delayed new drug launches in Korea, and emphasized the need for continuous efforts from the government and industry to improve treatment accessibility.
Pharmaceutical Expenditures and Accessibility
Professor Seung-rae Yoo of Dongduk Women’s University College of Pharmacy analyzed the current status of pharmaceutical expenditures by treatment group for new drugs. He pointed out that the expenditure ratio for new drugs listed over the past six years was the lowest among the 26 OECD countries surveyed and emphasized the need to improve accessibility to new drugs, especially for disease groups with a high disease burden.
Panel Discussion: Strengthening Coverage and Improving Health Insurance Finances
The second panel discussion featured experts from the Ministry of Health and Welfare, the Korea Pharmaceutical Industry Association, the Korean Patient Organizations Association, and the Korean Medical Bio Journalists Association. They debated ways to strengthen the coverage of patients with severe and rare diseases and improve health insurance finances. KRPIA Executive Director Choi In-hwa emphasized the need to focus on strengthening coverage rather than regulations to increase accessibility to new drug treatment for patients with severe and rare diseases.