"Today, he sang very loudly": a message from Korea after the first weeks on Triko

Younga Ko is a represntative of the Korean cystic fibrosis patient group. In September she wrote to us, a few days after a parcel of Triko finally reached her family's home in Korea. Her son had been waiting a long time for it.

Triko is a generic version of Trikafta, made by Beximco Pharmaceuticals in Bangladesh. Younga's family bought it through the CF Buyers Club.

Here is some of what she told us.

"Just a few days before it arrived, I was feeling exhausted, frustrated, and heartbroken because of the long delay. But the moment I finally received the medicine, all of those difficult feelings seemed to disappear.

Today is my son's fifth day taking Triko. We have not seen any dramatic changes yet, but he says that breathing feels easier and that walking feels a little less difficult. Because he is feeling better overall, he has been going out more often when his friends invite him.

Before this, my son often could not laugh freely. If he laughed too hard, he would become short of breath and start coughing, so there were times when he wanted to laugh loudly but had to hold himself back. Today, however, he laughed and coughed much less. It may sound like such a small thing, but to us it means so much.

He also loves to sing. When his coughing was bad, he often could not sing properly. Today, he sang very loudly. Hearing him sing like that made me incredibly happy.

Because of this treatment, my son may be able to enjoy more of an ordinary life: to attend school, study, spend time with his friends, and look toward his future with a little more hope."

CF in Korea

Younga also described what it is like to have CF in a country where the condition was, until recently, assumed not to exist.

Her patient group has six registered members. There may be a few more people being treated at other hospitals, but the total is tiny compared with most countries. Because CF was considered almost nonexistent in Korea, getting a correct diagnosis can take years. Few doctors have experience treating it, and many of the medicines families need are not covered by national health insurance, so they pay the costs themselves.

There is a second barrier. Many Korean patients have rare CFTR variants, quite different from the variants most studied in other countries, so some of them are not currently eligible for modulators. Several families are now looking at functional testing to find out whether the drugs might work for them anyway. If some of those patients respond, Younga expects more families will want to order Triko, and she has been sharing her own experience with them.

"I know that a great deal of research is being done overseas," she wrote, "and I sincerely hope that one day there will be good news for children whose mutations do not respond to the treatments currently available."

Why this matters

Vertex charges more than $370,000 a year for Trikafta in the US. Triko costs $6,375 a year for a child and $12,750 for an adult through the CF Buyers Club. That is still more than many families can pay, and buying the drug yourself is no substitute for a health system that provides it. But Younga's son is breathing more easily this month because a generic exists and a route to it was built.

Right to Breathe wants governments and health systems to provide these drugs to every eligible patient, wherever they live. Letters like Younga's are part of how we make that case.

If you are in Korea, or anywhere else, and want to know more about Triko, the CF Buyers Club website (cfbuyersclub.org) explains how it works.