MOHW lukewarm about Epilepsy Patient Support Bill

Samsung Medical Center Professor Hong “only 5 hospitals in Korea capable of surgery”

Severance Hospital Professor Kim “public’s lack of knowledge threatens lives”

MOHW “need to be fair for all diseases, existing law should cover it”

‘Epilepsy Patient Support Bill’ is at stake due to a dispute over feasibility of a bill specifically accommodating a certain disease.

 

The National Assembly lawmakers and the government are contemplating on passing an individual bill for a disease as it could trigger other patients to demand bills for their disease, and cause confusion in administrative regulation and fairness among diseases.

 

Whereas, patients and neurology healthcare providers are urging for the epilepsy bill to be passed as soon as possible, because the disease significantly shortens patient’s life span and poor social awareness and unfair social stigma are discriminating against patients with epilepsy.

 

The National Assembly Health and Welfare Committee convened a public hearing session on Nov.

 

22 about the ‘Epilepsy Management and Support Bill’ introduced by Lawmaker Kim Kim Se-Yeon.

 

The point of dispute was on fairness of establishing an independent law solely dedicated a single disease.

 

Epilepsy is a central nervous system disorder that causes abnormal events in brain cells, which leads to sudden and intense spasm and seizure lasting few minutes.

 

Experts say the estimated number of patients with epilepsy in Korea is around 360,000, and the disorder notably lowers not only the patients, but also the patients’ families’ quality of life, along with the huge impact of financial and social burden.

 

The submitted bill mainly aims to stipulate legal grounds of planning and executing epilepsy preventive measures, diagnosis, related research, as well as a patient support program to help the patients recover and become independent.

 

A couple of key objectives of the bill are to establish a policy raising public awareness and discrimination prevention of epilepsy and patients with epilepsy.

 

And also it would form National Epilepsy Patient Management Committee affiliated under Ministry of Health and Welfare (MOHW).

 

Another objective is to set up and operate Central Epilepsy Support Center and regional centers, and to allocate budget for contracted agency and Epilepsy Specializing Clinic Center assigned to manage patients by regional government body.

 

Lawmaker Kim Se-yeon suggested MOHW to lay the bill and urged Korea to stop neglecting patients with epilepsy any more.

 

“Usually, I keep a reserved stance on legislation, but this bill is different.

 

When a healthcare institute with a scale of Samsung Seoul Medical Center struggles with surgery on the disorder, it means the problem is quite serious”, Lawmaker Kim stated.

 

“If the weight of an individual bill accommodating a single disorder is too much, then consider a vision of a comprehensive bill covering three major brain disorders in few decades.

 

As I am not in the place to come back to the 21st National Assembly, I am desperately requesting the ministry to establish the bill”, Lawmaker Kim urged as he would be leaving the next election.

 

On the other hand, Lawmaker Ki Dong-Min pointed out an individual law for epilepsy could bring administrative and legal confusion, like the Deaf-blind Bill or so-called Helen Keller Bill, and also that it could unintentionally promote other patients to demand individual laws for their conditions fairly.

 

“Although we agree with the objective of the bill, the ministry seems to be shy of passing the bill.

 

Please elaborate further on the reality of patients with the disorder and why the bill should be process right now”, commented Lawmaker Ki.

 

Professor Kim Heung-dong of Severance Pediatric Hospital (left) and Professor Hong Seung Bong of Samsung Seoul Medical Center testifying at the public hearing session.

Professor Hong Seung Bong of Neurology Department at Samsung Seoul Medical Center and Professor Kim Heung-dong at Severance Pediatric Hospital testified that epilepsy is not only about ‘life or death issue’, but also about its critical impact on patient’s day-to-day life.

 

In particular, the two professors claimed Koreans have little understanding of epilepsy, which induces patient discrimination and hinders the patients to get proper treatment timing, often leaving them in hospital emergency rooms.

 

Apparently, people run away or give an unnecessary CPR to patients having a seizure, and eventually end up with unfortunate accidents like collapsed rib cage, all due to the public’s lack of awareness.

 

Moreover, the testifiers also explained there are only five healthcare institutes in Korea to conduct a proper epilepsy surgery in Korea.

 

Professor Hong Seung Bong explained “As far as individual laws for single disease go, there are ‘Dementia Management Act’, ‘Cancer Disease Support Law’, and ‘Act on Guarantee of Rights of and Support for Persons with Developmental Disabilities’.

 

Epilepsy has been designated as a most common but serious brain disorder by the World Health Organization (WHO).

 

The patient size of epilepsy is about a half of the dementia patients’, but the severity is much graver and the patients’ families often go through posttraumatic stress disorder after experiencing social discrimination”.

 

Professor Hong added, “Epilepsy is the second most severe disorder shortening a patient’s life span.

 

The severity of the disease should be taken more seriously.

 

In Korea, only five hospitals are capable of the disorder surgery.

 

Hospital’s training on doctors and policies are also problematic.

 

Korean people in general are quite ignorant about the disorder.

 

For instance, Australia spends about AUD 20 million to raise public awareness of the disorder”.

 

Professor Kim Heung-dong stated “At the moment, patients with epilepsy are mostly neglected from the existing law, and it is the classic case of “hidden disabilities”, where the patient would not speak up of the disorder.

 

Many people tend to run away from a patient experiencing a seizure, because first, they do not know how to react, and second, the fear of possible death.

 

These factors create intentional ignorance of the disorder”.

 

“Out of goodwill, some people try to give a CRP on a patient having a seizure, but the patient breaks a rib or two and visits emergency room.

 

By educating the people about epilepsy and common knowledge, the patients can finally have their place in the society.

 

If the individual law is not the main issue, then the bill should be processed immediately”, Professor Kim strongly emphasized.

 

MOHW official answered it understands the hardship that the patients go through, but as a government body, processing an individual law for all disease is a stretch, realistically speaking.

 

The ministry also elaborated that epilepsy treatment technology and drugs are mostly covered by National Health Insurance, and other neglected parts are supplemented by existing laws on persons with disabilities and rare disease.

 

The ministry insisted that existing laws are already reasonably managing the epilepsy and patients with the disorder.

 

“Setting a standard for testing feasibility of individual bill on a single disease should be approached carefully.

 

Every case of what patients undergo is extremely unfortunate.

 

But having a loose standard would only create unfairness in treating respective disease as a government body.

 

Soon, other patients would complain why there aren’t laws solely dedicated to chronic respiratory disorder or hepatic cirrhosis and so on”, MOHW official stated.

 

The government official added, “If the patients and their family feel the government support is insufficient now, then they can apply to have the disease designated as an individual disease under the grounds of Public Health and Medical Services Act.

 

The government believes that the epilepsy and patients’ issues should be handled not with an individual law, but with existing law”.

 

Some of Health and Welfare Committee members urged an individual law is needed.

 

Lawmaker Choi Do-ja argued “Excessive legislation of bills is problematic, but law should be amended and bills should be passed when the people are in need of help.

 

That is the purpose of National Assembly.

 

When the patients and their families get the news of what MOHW has said about not needing an individual law for epilepsy, they would be in a deep despair.

 

Law should be made, if need be”.

 

“Korea should change.

 

An individual law dedicated for 360,000 patients with epilepsy should be established for their improved treatment opportunity.

 

If hospitals are not equipped with neurologic diagnosis exam tools, then it should be purchased to treat the patients.

 

Running a daycare center for 31 years and taking care of a child with epilepsy myself, I personally experienced the traumatizing event.

 

This is where the government should step in”, Lawmaker Choi added.