Kwon Oh-joong's Son and the Unseen Struggles of Rare Diseases
South Korean actor Kwon Oh-joong recently opened up about his personal life on a national broadcast, revealing the heartbreaking medical challenges his son is facing. His child was diagnosed with a rare disease—so rare, in fact, that there is currently no existing treatment. The lack of available medication has deeply affected the family, who, like many others in similar situations, are stuck in emotional and financial limbo.
Kwon's story is far from unique. For families battling rare diseases, the path to hope is often paved with waiting, frustration, and helplessness. These conditions, by definition, affect a very small percentage of the population. This makes it difficult for pharmaceutical companies to find financial incentives to develop treatments, often leaving patients without viable options.
Why Rare Disease Treatment Matters
Every patient—regardless of how rare their condition may be—deserves a chance at recovery. But when only a few thousand or even a few dozen people worldwide suffer from the same disease, drug development stalls. That's because for big pharmaceutical firms, a small patient population often doesn't justify the high cost of research and development.
That’s where policy comes into play. In 1983, the United States passed the Orphan Drug Act, which has since led to the development of hundreds of treatments for rare conditions. Incentives such as tax breaks, research grants, and extended market exclusivity gave drug makers reason to invest in these less profitable avenues. However, efforts like this still face uphill challenges globally—including in South Korea, where Kwon resides.
Besides government action, public awareness plays a crucial role. When societies talk openly about rare diseases, stigma fades, empathy rises, and political will follows. By sharing his son’s story, Kwon isn’t just seeking help—he’s giving voice to thousands of unheard families battling similar invisible enemies.
Hope Meets Reality: The Cost and Challenges of Treatment Development
Developing a new drug isn’t just a matter of will—it’s a heavy investment. The process takes an average of 10 to 15 years and can cost upwards of a billion dollars. For rare diseases, the payoff may be minimal or even nonexistent. That’s a dealbreaker for most pharma companies, especially when breakthrough drugs for common illnesses offer more lucrative returns.
Moreover, healthcare has limited resources. Some critics argue that when faced with tough budget decisions, it's more reasonable to focus on treatments that benefit larger populations. In this utilitarian (maximizing benefit for the most people) view, rare diseases often get sidelined—despite their devastating effects on real lives.
One way to navigate this ethical maze is through public-private partnerships, where governments share the financial risks with drug companies. International research networks can also pool datasets and resources to accelerate breakthroughs. But even these initiatives take time—a commodity families like Kwon’s can’t afford.
Two Sides of the Debate
As awareness grows, a healthy debate is forming between those who call for increased attention toward rare diseases and those who prioritize systemic efficiency. Let's take a closer look:
| In Favor of Rare Disease Investment | Critics of Expanding Rare Disease Funding |
|---|---|
| Every human life is valuable. Even rare disease patients have the right to treatment. | Investing in rare diseases helps only a few while others suffer waitlists and backlogs. |
| Research in one rare disease can lead to broader scientific breakthroughs. | The success rate for these research projects is low, and often not cost-effective. |
| Raising social awareness improves quality of life for affected families. | We need to distribute medical resources with utility in mind—where they help the most people. |
Public Response and the Road Ahead
Kwon Oh-joong's story has stirred compassion and concern online. Viewers were deeply moved by his raw honesty, and many expressed surprise at the severity of the issue. Families dealing with rare diseases responded with thanks, saying they felt finally seen. Various online communities began circulating petitions for stronger health care legislation for ultra-rare conditions.
Still, talk alone isn't enough. We need concrete action: more research grants, faster regulatory processes, expanded health insurance coverage, and international collaboration. Ignoring these cases isn’t just ethically wrong—it stifles innovation and impedes medical progress.
Kwon’s plea—"I hope they find a cure before I die"—shouldn't echo into a void. With society's help, his hope can become a shared mission for a better, more inclusive healthcare future.
