Dreaming of making a brighter world together with patient

Interview with President Yu Hyeong-gon of Korean Association of Retinal Degeneration

“With a new gene therapy, I believe in a brighter world”

“6-year-old KARD formed to benefit public, hopefully provides more patient support”

About 40 patients with retinal degeneration and medical professions were taking a group walk on Namsan hiking trail.

 

No one could tell who was the patient or doctor.

 

Each seemed to be enjoying pleasant fall breeze brushing over their face.

 

President Yu Hyeong-gon of Korean Association of Retinal Degeneration (KARD) hosted an event, ‘Making a Brighter World’, for his organization.

 

A president of KARD and an ophthalmology professor at Seoul National University Hospital, Yu said, “As you can see, distinguishing a patient or non-patient is meaningless.

 

We both can be considered non-patient as for retinal degeneration, but we could be a patient with other health issue”.

 

KARD, the organization he leads differentiates itself from other patient group or academic society.

 

Member consists of mix between patients and doctors, but at the same time doctors are not the face of the organization.

 

While studying inherited retinal degenerations (IRDs), KARD also advocates for patient support and social awareness.

 

During the interview, President Yu Hyeong-gon constantly emphasized the value his organization strives on; ‘making a society embracing both patients and non-patients’.

 

▶How about a short introduction of your organization? “Korean Association of Retinal Degeneration, or KARD, is a research organization that also supports severe retinal degeneration treatment.

 

First it started as a small-scale study group for medical professions.

 

The members contemplated much about providing practical support to patients.

 

So the original members all agreed to make it a public interest group.

 

And without any other outside donation, each professor put down some money and made an incorporated association.

 

“Usually an academic society is formed centering doctors.

 

But KARD wanted to take a step further and make a group for actual patients to participate in.

 

In fact in the U.S., there are plenty of groups where patients and healthcare providers come together.

 

The organization got bigger as time passed, and now we have 50 university hospital medical professions and bioengineering researchers, along with 30 patients as members.

 

And there are some outside sponsors, KARD has numerous ongoing projects varying from treatment research to retinal degeneration awareness training and public relations for general public, and even to policy making.” ▶What inspired the ‘Making a Brighter World’ event?

 

“The name of the event, ‘Making a Brighter World’ has two meanings; one is to bring a ray of light to patients with visual impairment by providing effective treatment, and another is to make a warmer society by bringing disabled, sick and healthy people together.

 

That is how the name came about.

 

“This marks a sixth event.

 

In last five events, patients and non-patients took a walk together and tried rowing and tap dancing together.

 

All events had different activities, but what meant the most is spending the time together”.

 

▶Apparently there is no clearly proven treatment for IRDs.

 

But recent news reported now there are new treatments available like retina implant and gene therapy. “Gene therapy was developed first than the other.

 

It has been about a year and a half.

 

We predict it would be introduced to Korea at earliest next year.

 

Apparently, about 260 out of 300,000 genes cause IRDs.

 

And one of them is identified as ‘RP65’.

 

“Currently approved treatment targets defect in gene RP65.

 

It treats to prevent death of photoreceptor cell and recovers its function to a certain level.

 

Eye sight may get better a bit, but the treatment cannot completely revive dead cells.

 

But, it is still quite meaningful.

 

Because most of retinal mutation is found after 20s, even a bit of improvement in sight helps the patient’s later life.

 

“Prosthetic retina implant has been experimented many times, before gene therapy was as developed as now.

 

A chip is inserted to replace dead photoreceptors.

 

It literally stimulates cells to see artificially.

 

And because the chip would replace photoreceptor cells, the principle is to conduct the procedure after the cell is completely lost.

 

However, the procedure is quite burdensome without healthcare coverage”.

 

▶Going back to the medical condition, are symptoms mainly found in adulthood as you mentioned? “Most of patients recognize the condition after their early 20s.

 

Some rare cases have detected symptom when they were younger than one.

 

It is a condition called ‘Leber Congenital Amaurosis (LCA).’ Symptoms and progression are similar to normal retinal degeneration, but it starts at a very young age.

 

And if it is the RP65 causing the condition, then the said gene therapy can be tried”.

 

▶You mentioned 260 out of 300,000 genes are responsible for IRDs and one of them is RP65.

 

Then, out of a hundred IRDs patient, how many could use the gene therapy?

 

“It would be about one out of hundred.

 

Or maybe even less.

 

It may seem significantly low, but having one effective treatment out makes a difference.

 

After a success of this treatment, many pharmaceutical companies have initiated a pipeline on IRDs.

 

At the moment, 26 ongoing clinical trials are conducted around the world.

 

And the trials not only focus on RP65, but also on a gene called ‘MYO7A’”.

 

▶Is there any research done by the organization independently? “To be honest, independently researching a treatment is not that easy.

 

It requires advanced facilities and tools, and the cost is exponential.

 

So whenever there is a chance, we conduct a joint research with overseas research institute.

 

“Also we are actively participating in clinical trials.

 

Specifically, the organization has its own medical image analysis center for clinical trials.

 

In Korea, Chong Kun Dang Pharmaceutical is conducting a clinical trial on biosimilars.

 

27 university-affiliated hospitals are part of the study.

 

And there are other Korean companies running clinical trial on three or four other medicine.

 

And of course, multinational pharmaceutical companies are developing many more medicine”.

 

▶Heard there is an ongoing cohort study.

 

Have you found any new findings specifically for Korean patients? “General prevalence rate is not far off from cases in other countries.

 

Studies have found about one out of 2,000 has a severe IRDs, and one out of a thousand has not-so-severe IRDs.

 

And I published a book summarizing key findings of the condition.

 

“Many cases of IRDs have different causes.

 

Most of the cases were caused by uveitis, an eye infection, and sometimes it is found as symptoms of malnutrition, syphilis, tuberculosis, and other infectious diseases”.

 

▶Any notable plan in the future? “A patient has to take 200 genetic testing to get diagnosed with IRDs.

 

They cost about a little less than one million won per patient.

 

The cost is quite steep.

 

The organization is trying to sponsor the diagnostic tests for some patients.

 

We wish we can cover all patients, but the organization is not that well off.

 

But still our goal is to support as many patients as possible.

 

We are currently raising fund for 200 patients’ testing.

 

“KARD is now six years old.

 

When we turned a research group to a full-blown organization, we did not know what to expect.

 

But for sure, what we wanted out of it was for the sake of the public.

 

The organization’s schedule is getting full with events like ‘Making a Brighter World’, symposium and group counseling.

 

And we are now ready take the organization into another level.

 

So we could finally conduct creative research we have wanted to do”.

 

▶And lastly, few words to patients?

 

“It must be difficult without a clear treatment, yet.

 

But more treatments are getting coming soon.

 

Please do not let go of your hope.

 

KARD is here to provide various information and support for treatment.

 

“What matters the most is the ‘togetherness’.

 

Segregating patients and non-patients does not mean much.

 

Retina degeneration could make one a patient, but other diseases could make anyone a patient.

 

We hope we can bridge patients and non-patients for more help to be shared.

 

“I would also like to express my gratitude for all active patient members of KARD.

 

Many patients first join the organization for their individual agenda.

 

But as time passes, more of them try to help other patients based on their experience.

 

I know it is not that easy.

 

It is a right thing to do, but not everyone can do it.

 

We are just trying to be together and help each other.

 

We believe the day would come when we get good results for all endeavors”.