Pioneering healthcare access company Axios International on July 13, 2021, for greater multi-sectoral collaboration in overcoming healthcare access challenges that affect the rare disease community in Thailand. An estimated 5% of the Thai population suffer from a rare disease. However, the rarity of these conditions has created challenges for the populace seeking apposite healthcare, with patients struggling to understand their disease, access effective and quality treatment and finance their right to survive.

In a webinar convened by Axios International, entitled “Empowering rare disease patients: Addressing the gap between patient expectations and healthcare delivery” moderated by Mr. Erich Parpart, Senior Writer at Thai Enquirer, insights on the patient and treatment journey for rare diseases were exchanged by experts on healthcare access and rare diseases. The panel consisted of Ms. Roshel Jayasundera, Senior Director of Global Consulting, Axios International, Ms. Preeya Singhnarula, Founder of the Thai Rare Disease Foundation and Ms. Rebecca Stewart, CEO of RARE Revolution Magazine. The panellists discussed solutions to pertinent challenges deterring rare disease patients in Thailand from receiving effective healthcare access.

Ms. Jayasundera explains, “treating genetic complications involves significant costs that a small group of patients have to shoulder for lifelong treatments remain one of the biggest access barriers. In reality, it is an endeavor that requires multiple parties to come on board to address the financial and emotional burden patients and their families go through.”

Ms. Singhnarula founded the Thai Rare Disease Foundation to support fellow families across on Thailand in their fight with rare disease patients.

“Rightly so, more companies are taking patient engagement and advocacy seriously. We need to ensure that these initiatives genuinely have people at its core. We need to ensure researchers and healthcare professions are brought into the fold to treat patients as equal partners in their care”, remarked Ms. Stewart, an advocate for collaborative rare disease management over the last 8 years, when asked how various stakeholder groups can play a part in effective rare disease management in the future.

In its commitment to enabling healthcare access for rare disease patients, Axios International supports hemophilia patients in Thailand through an access initiative executed in collaboration with the government, allowing them access to non-expensive treatments. To further support rare disease patients, Axios International is also developing Patient Support Programs that enable patients to access care through multisectoral funding support.

Image Caption: Ms. Preeya Singhnarula, Founder of the Thai Rare Disease Foundation; Ms. Rebecca Stewart, CEO of RARE Revolution Magazine; Ms. Roshel Jayasundera, Senior Director of Global Consulting, Axios International