The patient-driven journey of the South Asian IBD Alliance (SAIA)

The South Asian IBD Alliance (SAIA) is a charitable nonprofit organization dedicated to addressing the unique challenges faced by individuals with inflammatory bowel disease (IBD). Founded by a diverse group of patients, clinicians, and advocates, SAIA was motivated by the urgent need to create resources, research, and educational materials specifically tailored for individuals living with IBD in South Asia and the healthcare providers serving these communities. Recent epidemiologic studies indicate a rising incidence of IBD in Asia, particularly in South Asia, where awareness remains low. Consequently, patients, families, and clinicians often face significant challenges in diagnosing and treating IBD. These challenges are compounded by limited treatment options, high costs, a mistrust of medical systems, and the stigma surrounding bowel diseases. By addressing these intertwined issues, SAIA aims to empower individuals and enhance healthcare delivery within the South Asian community.

SAIA’s primary goal is to unite patients and multidisciplinary clinicians from South Asia and its diaspora to tackle the significant challenges associated with IBD. Since its inception in [insert year], SAIA has sought to minimize healthcare disparities, dispel stigma, promote early diagnosis, and improve access to treatment while recognizing the cultural taboos that often delay care. A vital component of SAIA is Team IBDesis, which is dedicated to uniting and empowering South Asians living with IBD and addressing the stigma and psychosocial barriers that hinder effective treatment and support.

SAIA focuses on several key initiatives:
1. Patient Education: Developing comprehensive educational resources to empower patients and caregivers.
2. Professional Development: Enhancing the skills of multidisciplinary healthcare providers in the IBD space.
3. Research Development: Conducting and promoting research to highlight the need for improved care and treatment options.
4. Medication Access: Collaborating with pharmaceuticals and payers for more affordable medication access.
5. Clinical Trials: Establishing a robust clinical trial program to explore new treatments and therapies.

Through these efforts, SAIA, together with IBDesis, aims to support South Asians living with IBD worldwide, addressing the stigma and challenges affecting their access to care and overall well-being.

For more information:
https://southasianibd.org/
https://www.youtube.com/@southasianibd/videos