2023-05-07 21:26:27
Kim Jin-ah, Secretary General (Korea Association for Rare and Intractable Diseases)
When the seasons change, asthma patients are in a super-emergency situation more than any other disease. The English word for asthma, ‘Asthma’, is said to be derived from the Greek word for ‘out of breath’.
A significant number of severe asthmatics who experience emergency situations because they are unable to breathe, not just out of breath, are experiencing complex difficulties as they are unable to maintain normal activities socially and economically as well as suffering due to medical conditions. .
The first asthma patient I met was my mother-in-law. It was only after I got married that I realized how deadly the change of seasons in spring, with the large temperature difference between day and night, could be fatal for asthma patients, and it was around the same time that I saw myself using an asthma inhaler.
I only thought that most asthma patients, like my mother-in-law, could control their symptoms with common medications. However, in recent years, as a disease to which ‘special calculation of patients with severe incurable diseases’ has emerged depending on the severity, we have come to know the reality that patients with severe eosinophilic asthma are not guaranteed the ‘right to breathe’ to the extent that their lives are threatened.
Because of this situation, patients with severe eosinophilic asthma knocked on the door, requesting improvements in access to treatment to our institution, which is working for patients with rare and intractable diseases.
“During difficult economic times, I have been receiving high-dose steroid treatment on the recommendation of my hospital, and have suffered terrifying side effects. I participated in a temporary patient support program for a treatment that could reduce these side effects, and my asthma was well controlled, and I graduated from college and succeeded in finding a job.
According to the Korean Asthma Treatment Guidelines published by the Korean Asthma Allergy Society in 2021, the actual job suspension rate of severe asthma patients is 44.4%, and the job suspension period has been reported as an average of 7 years. Severe asthma patients are short of breath even in normal times, so physical activity is restricted and even with active treatment, repeated asthma exacerbations occur.
As a result, there is a risk of death despite treatment, and the quality of life is remarkably low due to complications from long-term steroid administration and emotional difficulties such as anxiety and depression due to repeated exacerbations. Along with the fear of asthma, the fear of the side effects of steroid drugs is a huge burden for long-term treatment. It is a pain that patients with severe eosinophilic asthma, whose symptoms cannot be controlled with the severe allergic asthma treatment that is covered by health insurance, are suffering even at this moment.
The need for a treatment that can be continuously and safely administered to patients is very high, so the medical community is recommending active biological treatment for severe eosinophilic asthma. It is known that precision treatment according to the phenotype is possible.
In addition, active discussions between patients and medical staff to select optimal treatment options are considered an important factor, and as a result, asthma treatment results have been reported to have improved dramatically. However, in Korea, several anti-IL-5 treatments have not been covered by insurance for several years, despite several attempts to be listed as insurance benefits after receiving approval from the Ministry of Food and Drug Safety.
In many diseases, life is threatened to such an extent that daily life is impossible because there is no therapeutic alternative, but the current situation in which diagnoses are assigned without distinction of severity needs to be improved. In addition, when appropriate treatments are available, realistic measures must be taken to improve patient access.
We hope that by improving treatment accessibility for patients with severe eosinophilic asthma, patients and their families can recover their daily lives, and patients can enjoy the right to breathe comfortably without masks. This year, the policy to strengthen the guarantee of treatment for patients with rare and incurable diseases has been strengthened so that all patients with rare and incurable diseases, including severe asthma patients who have been neglected so far, can alleviate pain and regain hope of life. We look forward to taking active measures.
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