Sakolthee opened a forum to break the deadlock in the healthcare system, pointing out that rare disease patients still face hardships from the earliest to the latest stages of care. He called on all sectors to collaboratively design a "sustainable and equitable solution," emphasizing that the government system must leave no one behind.
On 14 Sep 2026 GMT+7, Sakolthee Phattiyakul, Chairman of the Public Health Commission and List MP of the Democrat Party, opened a seminar titled "Developing the National Health Security System to Improve Access to Rare Disease Treatment." Participants included executives from the National Health Security Office, representatives from the Ministry of Public Health, the Food and Drug Administration, academics, doctors, specialists, representatives of rare disease patient networks, patients and families, as well as other attendees.
Sakolthee stated that although each rare disease affects relatively few patients, collectively they represent a significant public health issue. This serves as a critical test for the National Health Security System regarding its ability to provide comprehensive and equitable care to all citizens.
He emphasized that for rare disease patients, the problem does not begin only when expensive medications are needed. It starts from disease detection, accurate diagnosis, access to specialized tests, referrals to experts, availability of necessary drugs and technology, and extends to long-term continuous care.
“Some patients, especially children with genetic diseases, may need to visit multiple hospitals and spend a long time before receiving a diagnosis. Once the disease is identified, families face critical questions: Is there a treatment? Is it accessible? And to what extent can the National Health Security System cover the costs? This is not merely about the disease but concerns opportunities, equity, and the quality of life for patients and their families.” /** The original text contains only this phrase: “นายสกลธี กล่าว” which translates as “Sakolthee said.” It is a transitional phrase without new content. **/ Sakolthee said.
He further noted that several countries have developed concrete systems to support rare diseases. For example, Japan has a system for managing difficult-to-treat and rare diseases by linking diagnosis, patient data, treatment, and financial assistance. The European Union has developed the European Reference Networks, connecting experts and knowledge across regions and countries.
“These lessons show that solving rare disease issues cannot focus solely on which drugs to include in the benefits list. Instead, a holistic system approach is necessary, covering the entire treatment pathway from start to finish.” Sakolthee said.
He continued that Thailand has begun efforts such as including some rare diseases in the National Health Security benefits, developing rare disease care centers, and creating patient referral networks. However, it is now necessary to ask whether the existing system is sufficient, how to accelerate diagnosis, and how to enable patients in provinces to access specialists without difficult travel.
“How can we appropriately integrate orphan drugs and new high-cost technologies into the system? How should we design financial mechanisms to balance fairness to patients with the sustainability of the National Health Security System? If we apply cost-effectiveness criteria uniformly as for common diseases, some rare disease patients might lose early access to treatment. Conversely, we cannot ignore budget constraints in system design.” Sakolthee emphasized this point.
He added that what is needed is a “solution suitable for Thailand,” which might include developing a national rare disease patient registry, establishing expert center networks, enhancing referral systems and tele-expert consultations, and new financial models for high-cost drugs such as price negotiations, pooled purchasing, or outcome-based payments. Thailand could also consider ASEAN-level cooperation on patient data, research, laboratories, expert centers, and drug access. For diseases with very few patients, collaboration carries more power than isolated national efforts.
“The most important aspect of today’s seminar is to focus back on patients. I want this forum to be a space where all parties—including government agencies, fund managers, doctors, specialists, academics, and importantly patients and families—can share problems and jointly find answers on how Thailand should develop its health security system for rare diseases. The goal is fair access to necessary diagnosis and treatment while ensuring system sustainability. Ultimately, the quality of the health security system is measured not only by how well it serves the majority but also by whether it still recognizes and supports the one patient suffering from a disease affecting only one in thousands or tens of thousands.” Sakolthee said.
He reiterated that although diseases may be rare, patient numbers low, and treatment costly, the opportunity for appropriate diagnosis and treatment should not be as rare as the diseases themselves.
“I sincerely hope today’s seminar will not end with just exchanging opinions but will lead to concrete policy proposals and practical guidelines that can develop Thailand’s health security system, build hope that patients and families can truly feel, and lead to feasible, fair, and sustainable solutions that improve treatment opportunities for all rare disease patients.” Sakolthee said.
