[News Today] Lower cost for rare disease treatment

[LEAD]
Patients with rare and intractable diseases often face overwhelming treatment costs.

Even when drugs are available, monthly expenses can run into the tens of millions of won.

The government is now moving to ease the burden and improve access to treatment.

[REPORT]
This woman in her 20s suffers from hypophosphatemia, a condition where abnormally low levels of phosphate in the blood cause bones to bend.

She had difficulty moving on her own, but after starting a new drug treatment, she improved enough to walk without a wheelchair.

However, the medicine costs 11 million won a month, or over 100 million won a year, around 69-thousand US dollars.

This is because for adult patients, health insurance does not cover this item.

Park Sun-bae / Patient's parent
As a parent, I will do whatever it takes to cover treatment costs, but adult patients often cannot afford care.

Some 1.3 million people nationwide suffer from rare or serious illnesses that are difficult to cure.

The burden of medical costs is so huge that patients' families often grapple with financial hardship.

Jeong Eun-kyeong / Minister of Health and Welfare
We will step up support so that patients with rare diseases won't be left out just because they are a minority.

The government plans to add 70 rare diseases to a special health insurance coverage scheme and gradually cut the out-of-pocket rate from 10% to 5%, matching the level for cancer patients.

Jeong Jin-hyang / Head, Korean Organization for Rare Diseases
I hope patients feel the benefits quickly, that non-benefit treatments are soon covered.

Also, more medicines that patients had to buy from overseas due to lack of domestic supply will be added to the government-led urgent purchase drug list.

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