The Situation of ALS Patients and their Welfare in South Korea
Secretary General, Korean ALS Association
Cho GwangHee
About two to three people out of 100,000 suffer from ALS. There are about 1,200 ALS patients in South Korea today.
The care condition of ALS patients hasbeen improved in recent years. However, still many patients not only suffer from ALS but also have frustration, alienation, struggle and fear as their condition gets worse without much hope of recovering.
I received a call from a patient's wife the other day. Her husband could not breathe well any longer and had the bronchotomy about 10 days ago. Now, he sleeps well during the day, but cannot fall asleep at night.He is very unhappy about it.
He was staying at a special hospital for old people and it is located about an hour from Seoul. I visited him at the hospital. He had the operation of bronchotomy at a university hospital and came to the hospital for old people because his family could not prepare a home care environment for him. He looked a bit restless when I saw him. He can stay relatively calm during the day because nurses and helpers are around, but he becomes alone with all the lights off at night. Then, especially because he is not used to the ventilator yet, he becomes scared wondering what if his condition worsened suddenly. That keeps him awake all night.
Hearing about his fearful nights, I really hoped that a specialized hospital for ALS patients, which enablednurses and caregivers in turn(three or four times a day) to take care of the ALS patients all the time, would be available so that the ALS patients could sleep peacefully with assurance of care.
The ALS patients who are taken care of at home face the similar suffering. The patients know their family are sacrificed a lot in order to take care of the patients. It makes the patients pessimistic or feel guilty. In the worst case, a patient’s family abandons him or her (The patients become abandoned from their family).
Even if the life of ALS patients can be helped with proper treatment in case of an emergency situation in the stage of disease evolution, some patients could lose their lives because of the social alienation and indifference, lack of welfare policies or their financial difficulties.
The saddesttime for us is to hear stories of ALS patients that their families broke up because of the endless suffering and financial difficulties, or ALS patients are abandoned by their own families. Both the life of healthy people and the life of ALS patients are important. Everybody has the right to live together.
Is it such a difficult thing to build a small hospital to take care of ALS patients so that ALS patients can come and stay when they are alienated from the society, abandoned by their family or left alone with their suffering? The patients with ALS could share their suffering and help each other if such place were provided.
It is true that the welfare for disabled people has been improving in South Korea. The government provides fee to rent a ventilator for about 800 patients in South Korea. The patients who are 65 years old or above with sever condition can receive benefit from the treatment insurance system for senile disorder. Many treatment hospitals for old people have been established in all over the country. The "activity supporter service" also provides caregivers for three to six hours per day depending on their disability condition.
However, there is no support system specialized for ALS patients even though about 40% (300 people) of South Korea's 800 people with the ventilator are ALS patients. There is no hospital specially equipped for ALS treatment. In fact, the "activity supporter service" is very limited although they say patients can receive the support service three to six hours per day.
The total cure for ALS has not yet been provided. In such a situation, the patients with ALS have to survive just with emergency treatment when they face danger of death. Thus, the patients with ALS can maintain their self-respect to live such a struggling life only with sufficient quality of care. For the patients with ALS, good care equals their "existence" until a miraculous anti-ALS drug is invented.
We established the "Korean ALS Association" in May 2001 to improve the quality of life for ALS patients by letting the public know more about ALS. We invited Professor Kwang-Woo Lee of Seoul National Hospital Department of Neurology as a chairman. Korean ALS Association aims both to help the public understand the living and care situation of ALS patients and to establish specialized hospitals for ALS patients in every district in South Korea.
Thank you.