Health insurance coverage denied due to insufficient medical records: rare disease patients struggle to prove symptom onset

[Anchor]

Patients with rare muscle diseases have been unable to receive treatment despite the release of a new drug they have been waiting for over ten years.

To qualify for health insurance coverage for the expensive treatment, there must be a record of the disease onset before the age of 18, but finding old medical records is not easy.

What is the problem? Medical reporter Lee Chung-heon has investigated.

[Report]

This man has so little strength in his muscles that he struggles to get up from his seat.

Even when he walks with a cane, he often falls and gets injured.

He suffers from a rare disease called 'spinal muscular atrophy,' which causes muscle wasting and weakness.

Although his symptoms improved while taking a treatment currently in clinical trials, he can no longer take the medication because it is not covered by health insurance.

[Spinal muscular atrophy patient: "I could only wash my hair with one hand, but now I can use both hands. The biggest thing is not falling...."]

The reason he is excluded from health insurance coverage is that there is no medical record indicating the onset of the disease before the age of 18.

Although his hospital discharge record at the age of 22 states that he developed the disease at 14, it was rejected because it was not a record from when he was diagnosed.

The Health Insurance Review and Assessment Service requires submission of medical records proving the onset of the disease before the age of 18 in order to apply health insurance to the treatment.

However, there are not many patients who can secure medical records from before the age of 18.

This is because the mandatory retention period for medical records is ten years.

In particular, for those born before 1994, there are no mandatory records kept from before the age of 18.

[Spinal muscular atrophy patient/37 years old: "There are many places that have either discarded records or have gone out of business, so it’s very hard to find them."]

There are calls in the medical field for more reasonable criteria to be established.

[Park Hyung-jun/Professor of Neurology at Gangnam Severance Hospital: "Before 2019, there would be no reason to falsify the record of the age of symptom onset, so if that level of record exists, why not recognize it...."]

Additionally, it may be worth considering using the current medical professionals' medical judgment as a criterion for health insurance coverage.

This is KBS News, Lee Chung-heon.