Beyond Medical Needs: The Human Rights of CAH Communities

On August 22, 2024, IA joined Caring and Living As Neighbor (CLAN) for the most recent quarterly Community of Practice (CoP) virtual meeting. IA Cross-Movement Building Officer from Intersex Asia and other participants from different countries reflected on the significant strides the project has made through the recent delivery of phase I of their project in the Philippines (Bridging the Gaps) and the Knowledge to Action Framework. This collaborative platform also provided invaluable insights into the way we understand the challenges faced by Congenital Adrenal Hyperplasia (CAH) communities around the world, particularly in the Philippines, and has reinforced our commitment to ensuring that intersex and patient organizations have their health and human rights safeguarded at all times.

Learning from the community

During the meeting, we discussed the different situations in various African countries, highlighting the complexities surrounding access to critical medicines such as Hydrocortisone and Fludrocortisone. We were particularly concerned by the disparities in availability, cost, and access to diagnostics,  Our discussions were further enriched by updates on recent developments in the human rights landscape, including the significance of the first intersex resolution at the United Nations Human Rights Council in April 2024. 

The Knowledge to Action Framework, as showcased by CLAN, emphasizes the importance of collaboration, resource sharing, and advocacy in effecting meaningful and lasting change. Through this framework, we have learned to harness collective knowledge to drive improvements in healthcare access while also working on policies that protect bodily integrity, personal consent, and bodily autonomy. Upholding fundamental principles of bioethics in healthcare for intersex individuals and by promoting bodily integrity, personal informed informed consent, and comprehensive medical care.

Way forward

For Intersex Asia, engaging in these spaces is crucial. It allows us to communicate effectively the urgent need for affirmative access to healthcare resources and to help to raise awareness about the unique challenges faced by our communities in Asia and the importance of understanding the voices of intersex communities around the world. The experiences shared by our African colleagues underscore the importance of continued advocacy to ensure that every intersex individual has access to the medicines and diagnostic tools necessary for their well-being. 

From Intersex Asia, we look forward to future collaborations with CLAN, Mates4Kids, and all the CAH global community, our hope is to build on these learnings and work closely with all other stakeholders to create sustainable solutions that affirm the health and human rights of persons with CAH and intersex communities, Our hope is to contribute towards ensuring a future in which every child have access to their fundamental needs, such as medications, where medical needs are evaluated based on urgency, necessity we hope everyone’s right to health should always be protected, and upheld.

As part of the way forward from Intersex Asia, in early November 2024, tentatively, we have planned to host a webinar to discuss with the worldwide community the recent experiences in our access to medicines project, efforts, and plans to identify pharmaceutical solutions for intersex communities in the Philippines. We cordially invite you to join us at this webinar and contribute your valuable insights toward finding effective and inclusive healthcare solutions for intersex children. Together, let us create a more equitable future for all.

#LeaveNoChildBehind

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Check out our movement for the intersex community in The Philippines.
Forming the Pioneers.
The role of parent in championing intersex human rights

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