[On the Road to Meet] “Designing the System Together as True Partners” — Changduk Ji, Rare Disease Business Architect (Part 2)

Key Highlights

• The Reimbursement Barrier: The structural limits of rare diseases lacking clinical evidence, and the increasingly complex landscape of drug pricing and coverage.
• True Partnership: Moving from a simple service provider to a “Solution Partner” that co-designs the ecosystem using genomic Real-World Evidence (RWE).
• Career and Purpose: Reflecting on the essence of work during a 10-year career pivot and establishing a long-term vision for the rare disease ecosystem.

Recap of Part 1 In Part 1, Changduk Ji shared his transition from primary care blockbusters to the rare disease space. He detailed how a tripartite alliance [Pharma – AI Diagnostics – Distributor] expanded the overall diagnostic market instead of fighting over existing market share, accelerating time-to-diagnosis for rare disease patients.

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PART 3. Drug Launch, Reimbursement, and Partnership

Q. Between bringing a drug into the market and securing reimbursement, which is the tougher battle?

Changduk: They are interconnected, but securing reimbursement and drug pricing has become far more challenging nowadays. It requires presenting scientific evidence to HIRA (Health Insurance Review and Assessment Service), negotiating financial terms with NHIS (National Health Insurance Service), and weighing internal commercial viability simultaneously.

Strict global benchmarks like International Reference Pricing (IRP), alongside complex mechanisms such as Risk Sharing Agreements (RSA) and post-reimbursement evaluations, present high hurdles. Above all, the small patient population in rare diseases naturally leads to a lack of clinical evidence, which constantly poses a structural limitation. Navigating this complex process has helped me build comprehensive expertise across clinical value, reimbursement, pricing, and business viability—experience I recently applied to successfully launch another rare disease treatment.

Sookjin: While the system grows increasingly complex, I can understand the perspective of each stakeholder. Ultimately, everyone shares the same core challenge: how to maximize efficiency and value for patients within their given roles.

Q. What should diagnostic companies consider to become true partners to pharmaceutical companies?

Changduk: Diagnostic companies need to evolve beyond being mere “Service Providers” delivering technology to become “Solution Partners” that co-design the system. This requires deep disease understanding from both B2B and B2C perspectives, as well as sharp insights into industry dynamics.

Moving forward, the value of Real-World Evidence (RWE) will grow exponentially. Genomic data accumulated throughout the diagnostic process is not just raw data—it is a critical asset for drug development, post-market evaluations, and reimbursement decisions. (Though I know 3billion is already excelling in this area!)

Sookjin: Indeed. Recently, pharmaceutical companies have shown immense interest in patient data associated with specific genetic variants—as have patients and their families. At 3billion, we aim to share this data within allowable frameworks to help expand the broader ecosystem.

Q. What is the biggest misconception diagnostic companies have about pharma? Feel free to be candid.

Changduk: Pharmaceutical companies are not simply driven to “sell one more drug.” We genuinely aim to “create an environment where patients can receive proper treatment.” When diagnostic companies understand this shared mission and vision to co-create the patient journey, we can achieve far greater outcomes together.

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PART 4. A Moment of Reflection, and the Future

Q. Passing through this transitional period, how have your working style and values evolved? What advice would you give to junior colleagues?

Changduk: Looking back, waves of change arrived every 10 years. But this recent pause offered an opportunity to look deeply inward. It is essential to push yourself to answer fundamental questions: “What have I done well?”, “What do I want to do next?”, and “Why do I want to do it?” Identifying your internal drive comes before choosing which ship to sail or which role to wear.

What have I done well?”, “What do I want to do next?”, and “Why do I want to do it?”

Sookjin: I agree. In the middle of a busy career, it’s easy to neglect asking ourselves those questions. Over time, the meaning behind our work becomes even more vital. I will keep this advice in mind and listen closely to my own inner voice.

Q. Over the next five years, what is the one thing you most want to change in the domestic rare disease environment?

Changduk: Among approximately 7,000 rare diseases, only 5% have approved treatments. Even then, many patients suffer either due to lack of diagnosis or lack of available drugs. I want to widen this narrow door of opportunity. As big data and AI accelerate drug discovery, I hope to serve as a sturdy bridge so that innovative therapies from abroad reach Korean patients in a timely manner.

Q. Lastly, how do you wish to be remembered?

Changduk: It would be more than enough if my work made a small difference in improving the lives of rare disease patients, and if colleagues I worked with could say, “Working with him was truly meaningful.”

Sookjin: As a colleague who has worked alongside you and will continue to do so, I would like to say: “Working with you, Changduk, was truly meaningful.”

Meeting colleagues who share the same vision and push forward in their respective roles reminds us of the true meaning of our work. Within the ecosystem built together by clinicians, pharmaceutical companies, and diagnostic providers, we will continuously ask ourselves how we can contribute even more to rare disease patients and take action.

— Sookjin Lee, CBO at 3billion —