ALS patients take to the streets

[Anchor]

Famous American baseball player Lou Gehrig was diagnosed with 'amyotrophic lateral sclerosis' 86 years ago today and passed away two years later.

It is a rare and incurable disease that weakens muscles, paralyzes the body, and makes breathing difficult.

Later, it became known as Lou Gehrig's disease.

There are approximately 4,700 patients in the country, with 300 to 400 new diagnoses each year.

The late basketball player Park Seung-il, who suffered from Lou Gehrig's disease for 23 years, described it as "a disease that drives you to the point of death, even for your family."

Today (June 19), on 'Global ALS Awareness Day', patients and their families took to the streets to call for expanded care support.

Reporter Jin Sun-min has the story.

[Report]

A woman in her 50s who was diagnosed with Lou Gehrig's disease 16 years ago.

She cannot breathe without a ventilator...

and can only communicate with her eyes.

She needs care 24 hours a day, with an external activity support worker during the day and her husband, who finishes public work at night, taking care of her.

[Oh Hae-yong/Husband of ALS patient: "When you have a patient like this, living is not living. You just suffer in pain every day."]

Although her husband is qualified as an activity support worker, he cannot receive government payments for caring for his wife.

This is because family care is not recognized.

In response to ongoing issues raised, the government has been providing temporary hourly wages of 5,000 won for family care for some severe patients since last November.

However, families of patients express that the system is unrealistic.

If they receive payment for family care, they cannot use external activity support workers at all.

[Oh Hae-yong/Husband of ALS patient: "I have to care for her until she dies, but I can't just sit in this room 24 hours a day going around in circles. That's why we need those teachers."]

Families of patients are demanding that even if they receive payment for family care, they should be allowed to use external activity support workers as well.

[Sung Jeong-jun/President of the Korean ALS Association: "(Currently) they are being asked to choose between family activity support or using external activity support workers. It would be much better if they could use both in a patient-customized way."]

The Ministry of Health and Welfare stated that more social discussion is needed to expand family care support and that they will decide after a pilot operation.

This is KBS News Jin Sun-min.