SAIA exclusive: ‘Move the needle’ to reduce stigma, barriers for South Asians with IBD
Click Here to Manage Email Alerts
With inflammatory bowel disease on the rise in the South Asian community, patients face barriers to diagnosis and treatment, lack of insurance, stigmatization and low cultural competence from specialists — if a specialist can be found at all.
Traditionally regarded as a disease of the Western world, epidemiological data published in Inflammatory Intestinal Diseases showed that although the prevalence of IBD is lower in India than in the U.S., the total IBD population in India is among the “largest across the globe,” with 1.4 million people affected in a country of more than 120 million.
Image: Healio
Despite these statistics, IBD continues to garner poor disease awareness and carries cultural taboos, misconceptions and stigma, all of which negatively affect the acceptance of diagnosis, long-term therapy adherence and ostomy surgery uptake.
Healio has worked closely with the nonprofit South Asian IBD Alliance to cover news highlighting the unique obstacles South Asian patients with IBD face across the Indian diaspora. Experts and patient advocates involved with SAIA have met with Healio to discuss the “rapid increase” in the incidence of IBD in South Asia, the low supply of specialists trained to treat IBD and the gaps in India’s health insurance.
In case you missed it, Healio has put together its latest interviews with SAIA including the organization’s latest research and their goals to better improve outcomes for South Asians with IBD.
Q&A: SAIA works to ‘pave the path forward’ among South Asian IBD population
Many barriers to care persist among South Asian patients with inflammatory bowel disease; to combat the unique challenges of this population, South Asian IBD Alliance seeks to increase preventive research and access to care.
“South Asian IBD Alliance (aka SAIA) is a nonprofit charity led by patients and multidisciplinary clinicians to help improve care for the South Asian population living with inflammatory bowel diseases,” Tina Aswani-Omprakash, patient advocate and President of SAIA, told Healio. “We, as patients and clinicians, came together after recognizing the unique need for cultural competence in caring for this group of patients, as well as in educating them and their families to shorten time to diagnosis, improve uptake of therapies/surgery and improve overall quality of life.” Read more.
VIDEO: Advanced training, education critical in quest to improve IBD care in South Asia
In this Healio video exclusive, Parakkal Deepak, MBBS, MS, FACG, highlights several challenges faced by individuals with inflammatory bowel disease in South Asia, including an “inadequate availability” of IBD specialists.
“Currently, we have a few tertiary Centers of Excellence treating patients with IBD in the South Asian region, especially in India,” Deepak, associate professor of medicine at Washington University School of Medicine in St. Louis, said. “You often have patients travelling long distances, and even from other countries in that region, to see these specialists.” Read more.
VIDEO: Costly treatments, lack of insurance hinder care for IBD patients in South Asia
In this Healio video exclusive, Neilanjan Nandi, MD, FACP, discusses the financial burden for patients with inflammatory bowel disease in South Asia, fueled by costly diagnostics and treatments and lack of health insurance.
“Although medical insurance does exist in South Asia, the comprehensive profile that we’re used to in the West is not so comprehensive there,” Nandi, associate professor of clinical medicine at the University of Pennsylvania and member of SAIA, said. “Therefore, there’s a lot of financial burden on the patients.” Read more.
VIDEO: We must ‘move the needle forward’ to ensure quality IBD care for patients worldwide
In this Healio video exclusive, Crohn’s patient advocate Madhura Balasubramaniam discusses how care interventions are often unaffordable and unattainable for the average South Asian patient with inflammatory bowel disease.
Balasubramaniam, director of patient outreach and advocacy at the SAIA, and colleagues recently published a commentary in Gastroenterology that identified care challenges as opportunities for research, education and advocacy for patients with IBD in South Asia. Read more.
VIDEO: SAIA research aims to improve care, outcomes in South Asian IBD patients
In this Healio video series, which focuses on cultural competency in the treatment of inflammatory bowel disease, Shaji Sebastian, MD, FRCP, discusses IBD incidence in South Asian countries and advances in research and care for patients.
“Clearly this rapid increase in incidence, leading to compound prevalence, will have significant challenges not only at the health care resource and economic level but also at a cultural level,” Sebastian, professor of gastroenterology at Hull University Teaching Hospitals NHS Trust in the United Kingdom and co-chair of the SAIA research committee, said. “And along with these challenges also come opportunities to study the etiopathogenesis and identification of triggers behind the development of IBD.” Read more.
VIDEO: Financial challenges further burden South Asian IBD patients
In this Healio video series, which focuses on cultural competency in the treatment of inflammatory bowel disease, patient advocate Madhura Balasubramaniam shares her experience living with Crohn’s disease in India.
Balasubramaniam, who is also a member of the executive council for the SAIA, said that in addition to the cultural stigmas she faced with IBD, one of the most challenging aspects of her disease was the financial burden on her and her family, as health insurance policies in India do not cover medications or routine examinations and diagnostics, such as colonoscopies. Read more.
VIDEO: SAIA strives to elevate knowledge of IBD to eliminate cultural stigmas
In this Healio video series, which focuses on cultural competency in the treatment of inflammatory bowel disease, Neilanjan Nandi, MD, FACP, discusses the importance of increasing community knowledge and destigmatizing IBD.
“Why should this matter?” Nandi, associate professor of clinical medicine at the University of Pennsylvania and member of the SAIA, asked. “As we know, culture makes many things taboo, including chronic illness.” Read more.
Reference:
- Kedia S, et al. Inflamm Intest Dis. 2017;doi:10.1159/000465522.