Following a consultative meeting hosted by Intersex Asia with the Parents of Intersex Children in the Philippines at Y2 Residence Hotel in Makati on June 23, a coalition of 31 parents of individuals with Congenital Adrenal Hyperplasia (CAH) and advocates from Civil Society Organizations, including CAHSAPI (Congenital Adrenal Hyperplasia Support Group of the Philippines), Intersex Philippines, and Intersex Asia, united to express an urgent concern: the ongoing barriers faced by these communities in accessing medications, diagnostic tools, and adequate medical support essential for managing CAH.
CAH, the most prevalent intersex variation in the Philippines, leads to hormonal imbalances that require infants to receive medications such as Hydrocortisone and Fludrocortisone. These medicines must be precisely dosed to align with each child’s size, growth, metabolism, and hormone levels (e.g., 17-OH-progesterone) and administered continuously to support their health and survival.
Due to significant gaps in care for these communities—including the scarcity of commercial pharmaceutical options, limited access to essential blood tests and resources like 17-OHP, the incomplete implementation of Newborn Screening, and inadequate support for CAH care—the life expectancy of affected children remains low.
The Philippine government has a responsibility to ensure that no child is deprived of their right to healthcare. The Universal Health Care Law (RA 11223) mandates that every Filipino has access to comprehensive health services without financial hardship, aiming to leave no one behind. This protection must extend to intersex children, who urgently require support to safeguard their health.
The Rare Diseases Act of the Philippines (RA 10747), enacted in 2016, obligates the government to provide comprehensive healthcare and financial support to individuals with rare diseases. This is particularly crucial for marginalized communities, including intersex children with CAH, who deserve equal rights, protections, and healthcare as other citizens, including persons with disabilities (PWDs). Despite these legal mandates, gaps persist in diagnosis, access to life-saving care, and availability of critical diagnostic tools.
Challenges Faced by Intersex Children with CAH in the Philippines:
- Inadequate Access to Life-Saving Medications: Critical medicines such as Hydrocortisone and Fludrocortisone in adapted pharmaceutical forms for children, essential for daily management and emergency care of CAH, remain unaffordable or widely unavailable for many families around the country. Challenges in securing stable supply lines, coupled with market unavailability of orphan medicines, further compound these barriers. This lack of consistent access puts children with CAH at an increased risk of adrenal crises and even fatalities, underscoring the urgent need for identifying sustainable and accessible solutions.
- Lack of Specialized Medical Care: Few healthcare providers are properly trained to manage the particularities of CAH, resulting in misdiagnosis, inadequate treatment, and limited understanding of this medical condition and treatment.
- Lack of Universal Implementation of Newborn Screening and Diagnostic Tools: Universal screening is crucial for prompt diagnosis and adequate immediate management and care after a baby with CAH is born, additionally lab test like 17-OHP which are very important to evaluate and calculate medication dosages are largely inaccessible especially in remote areas or unaffordable. Such tools are essential for monitoring of this condition, accurate dosage calculation and effective treatment.
- Economic Barriers: The significant cost of essential treatments, diagnostic tools and medications places an unsustainable burden on families, particularly in the absence of adequate financial support mechanisms, subsidies, reimbursement options or comprehensive insurance coverage, rendering life-saving healthcare inaccessible for many.
- Social and Psychological Support Deficiencies: Families of children with CAH often experience stigma and financial stress, compounded by a lack of mental health and counseling services.
A Call for Solidarity and Action
We respectfully encourage the Department of Health to consider addressing these critical issues as outlined by the Universal Health Care Law (RA 11223) and the Rare Diseases Act of the Philippines (RA 10747). In this spirit of collaboration, we propose the following considerations:
Ensure Availability and Affordability of Medications: We suggest exploring both short-term humanitarian aid options and sustainable long-term solutions to secure affordable medications and diagnostic tools. It is essential that these resources be accessible nationwide and supported by national health insurance, including special provisions for persons with disabilities (PWDs). Currently, the availability of these medications from a single compounding pharmacy presents challenges related to market exclusivity, high costs, and potential sudden shortages as experienced during the COVID-19 pandemic. As these medicines are classified as essential per WHO guidelines, we believe that their pricing should be thoughtfully regulated, and alternatives should be made accessible.
Enhance Medical Training and Public Awareness: We advocate for the establishment of specialized training programs for healthcare providers, developed in partnership with CAH patients, their families, and medical professionals, to improve the diagnosis and treatment of CAH. Additionally, fostering public awareness can play a vital role in reducing stigma and discrimination while promoting adequate healthcare for persons with CAH.
Expand Access and Implementation to Diagnostic Tools, Newborn Screening (NBS), and Laboratory Tests: We encourage the Department to facilitate universal access to newborn screening and to consider establishing additional diagnostic centers across the country, while improving the distribution of the 17-OHP test to ensure proper treatment is accessible to families without financial burden.
Provide Financial Assistance and Insurance Coverage: We recommend the introduction of subsidies or financial aid to support families with the costs of essential medical treatments and to ensure that newer, pediatric-specific medications are included in the national formulary and insurance coverage.
Develop Comprehensive Support Services: We propose the establishment and funding of mental health and support programs tailored specifically to intersex children and their families, including peer support groups and counseling services.
It is crucial for the government to take proactive steps to address these disparities in healthcare. By facilitating access to the medical support, diagnostics, and treatment needed by intersex children with CAH, we collectively safeguard their health and future. Without timely intervention, these children may experience preventable suffering and, in severe cases, premature death. Their right to health, as articulated in national laws and international human rights obligations, should be upheld.
We sincerely hope that the Department of Health will consider these suggestions to bridge the gaps in care, enabling these children to grow, thrive, and contribute to society as empowered individuals. Together, we can ensure that no child is left behind.
CAHSAPI (Congenital Adrenal Hyperplasia Support Group of the Philippines)
Intersex Philippines
Intersex Asia
