On November 8, 2024, in honor of International Intersex Day of Solidarity, Intersex Asia hosted a landmark webinar addressing the urgent healthcare needs of intersex children with Congenital Adrenal Hyperplasia (CAH) in the Philippines. The event was attended by more than 30 persons with healthcare professionals, activists, advocates, and family members coming together to address critical gaps in access to life-saving medicines, diagnostics, and support systems. With participants from diverse backgrounds, the gathering focused on advancing policies, mobilizing community support, and shaping sustainable healthcare solutions to support intersex individuals across Asia.
The webinar is to highlight the challenges faced by intersex people with CAH and their families, gaps in access to life-saving medicines, diagnostic tools, and adequate access to health care professionals with the adequate understanding of this condition and identify solutions in collaboration with philanthropic organizations, health care, pharmaceutical stakeholders and national health authorities, and all relevant stakeholders. With the participation and contribution from experienced panels, we was be able to stress the importance of accessible, equitable healthcare policies for intersex people. Jeff Cagandahan, Co – Chair of Intersex Asia and CEO of Intersex Philippines emphasized the need for guaranteed access to essential treatments such as hydrocortisone and fludrocortisone, which remain out of reach for many due to implementation gaps in legislation like the Filipino Rare Disease Act.
“Every child, regardless of their circumstances, deserves a fair chance at life through access to the medicines and care they need. It’s not just a matter of health—it’s a matter of justice”, Jeff remarked.
Dr. Jedeane Aragon, President of the Philippine Society of Pediatric Metabolism and Endocrinology, called for the inclusion of CAH treatments in national healthcare programs, universal newborn screening, and accessible diagnostic tools such as 17OHP and confirmatory tests. Furthermore, Dr. Kate Armstrong, co-founder of CLAN, highlighted the potential for global alliances to drive systemic change by sharing a model for multi-sector partnerships designed to reduce preventable mortality for CAH children by 2030. Carmen Auste, CEO of the Cancer Warriors Foundation, stressed on the significance of strategic advocacy and the value of building relationships with government entities like the Philippine Department of Health (DOH). Finally, Alain Yap, President of CAHSAPI, highlighted the essential role of family-led, community-driven advocacy. All speakers echoes on the need of building actionable solutions and strategies to bridging the gaps in healthcare and advocacy for CAH communities.
Some Key Highlights from the Webinar
- Call for Inclusive Healthcare Policies: Advocacy for policies that acknowledge intersex healthcare needs, ensuring equitable access to CAH treatments, Universal implementation of New Born Screening and essential diagnostic tools (17 OHP) across the country.
- Global Multi-Sector Collaboration: Inspired by CLAN’s model, Intersex Asia and its partners aim to transform knowledge into actionable strategies for sustainable healthcare access solutions in Asia with the power of our communities.
- Effective Advocacy Strategies: The importance of strategic lobbying and fostering government partnerships to advance policy reforms within the Philippines attending the needs of CAH and intersex communities while calling for effective implementation of existing legislation (Rare Disease Act of 2016) and building alliances with healthcare legislative champions advocating within the Deparment of Health for the Rare Disease Act’s implementation to ensure CAH medications and related diagnostic tools are accessible in the country.
- Exploring Pharmaceutical Access Solutions: Initiatives to engage with pharmaceutical companies for compassionate import permits, while advocate with the private sector for formal medicine registration to improve medication access for CAH.
Access the presentations of the speakers and webinar in this link
Next Steps:
- Moving Toward Equitable Healthcare: Prioritizing affordable and accessible CAH medications and diagnostic tools, in collaboration with the Department of Health, Private Sector, and CAH communities while advocating for resources, facilitating compassione special permits, long term registrations within the FDA for the unavailable variations of these medicines, and equal distribution of resources including diagnostic tools in underserved regions of the Philippines.
- Strengthening Call for Solidarity and Advocacy: Expanding legislative alliances to build public and political support for further healthcare access for CAH-affected children. You can join our collective action in support of CAH communities by signing our call for solidarity here: A call for solidarity addressed to the Department of Health of the Phillippines.
- Building Cross-Regional Partnerships: Collaborating with civic organizations to strengthen current healthcare networks, secure funding, identify further collaborators and expand advocacy efforts for CAH communities and intersex rights across Asia.
Closing the event, Hiker Chiu, CEO of Intersex Asia, reiterated that unity, community, and compassion are at the heart of Intersex Asia’s mission. Hiker emphasized that true change depends on collaboration among cross-community partnerships, affirming healthcare professionals, and dedicated parents. “Together, we’re building a future where no one in our community—especially no intersex child—is denied the life-saving healthcare they deserve. Let’s move forward, united in strength and purpose for this vital cause.”
#LeaveNoChildBehind #IntersexDayOfSolidarity
