Q&A: SAIA works to ‘pave the path forward’ among South Asian IBD population
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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.”
Despite the growing incidence of IBD in the South Asian population, the needs of this particular group of patients have remained underrepresented in research, clinical practice and advocacy. Further, though the Selecting Therapeutic Targets in Inflammatory Bowel Disease– or STRIDE II – guidelines outlined a plan for a treat-to-target approach in 2021, Aswani-Omprakash and colleagues noted in Gastroenterology that several diagnostic challenges and barriers to treatment implementation remain.
“There is a huge propensity towards complementary and alternative therapies in our community, as well as a stigma towards the disease and medication use, which is contributing to additional psychosocial stress and delays in adequate treatment,” she said. “We recognize these needs and are paving the way to spearhead research that addresses unique phenotypes of disease in order to contribute toward precision medicine.”
To navigate these barriers to care, SAIA has petitioned for new research opportunities in disease monitoring and the effect of biosimilar adoption on ‘direct and indirect cost burden’ in patients; a ‘multipronged approach’ to eradicating cultural stigmatization; and establishing a ‘uniform coding system and electronic infrastructure’ for reviewing the interaction among genetics, the immune system, microbiome and environmental influences on IBD incidence.
In a Healio interview exclusive, Aswani-Omprakash spoke more in-depth on the unique challenges this population faces and how SAIA intends to mediate some of these barriers to care.
Healio: What is the main diagnostic challenge South Asian patients with Crohn’s disease face?
Aswani-Omprakash: South Asia has a much higher tuberculosis (TB) prevalence than the UK and U.S.; 312 per 100,000 persons in India vs. 2.3 and 2.4 per 100,000 persons in the UK and U.S., respectively. The clinical, endoscopic and histologic findings are also similar between CD and gastrointestinal tuberculosis (GITB), meaning that the pathology looks very similar in both conditions.
This poses challenges to diagnosing Crohn’s disease (CD) accurately and in a timely fashion and in differentiating CD from GITB. Although a negative interferon-gamma release assay may be reassuring in the West because prevalence is so low, such tests are not conclusive in South Asia because the prevalence of TB is so high and the risk of latent TB is also very high. A negative assay cannot completely rule out TB and a positive interferon-gamma release assay could still occur in IBD due to latent TB.
Microbiological tests for GITB (e.g., culture and polymerase chain reaction) on intestinal tissue samples have low sensitivity, which means these tests can result in false negatives and not be accurate in diagnosing GITB. As a result, empirical anti-tubercular treatment (ATT) may be prescribed alongside Crohn’s therapies to get disease lesions and inflammation better controlled. Patients may respond and then physicians won’t know what medication actually helped. Or physicians may try empirical ATT first, see it not work and then prescribe Crohn’s medications, which may result in further delays in diagnosis and treatment.
Healio: How do the challenges in implementing treat-to-target strategies culminate into decreased quality of life for SA patients with IBD?
Aswani-Omprakash: For one, there is inadequate availability of IBD specialists and therapies: Many have not studied or learned much about IBD in medical school as IBD was considered a Western disease. Now when it shows up in practice, it leaves primary care physicians and gastroenterologists blinded to seeing what could be GITB vs. Crohn’s in children and in adults. This leads to delays in diagnosis and patients foregoing care or staying on suboptimal therapies.
Plus, there is a lack of access to effective therapies – including biological agents and small molecules – which leads to steroid dependency, remaining on 5-ASAs (which are also expensive), undergoing surgery after surgery or culminating in colorectal cancer due to uncontrolled intestinal inflammation. We have even seen quite a few deaths in our community due to delayed and/or a lack of access to care and effective therapies.
Secondly, one of the key challenges to IBD management in South Asia is the financial toxicity experienced by patients and their families. This is something many of the patients in our private Facebook community, @IBDesis, and on SAIA’’s board deal with every single day and it saddens me to hear it.
Many patients are unable to adhere to IBD management plans developed by their doctors, leading to significant loss of quality of life, morbidity and disability in the South Asian community.
Thirdly, another challenge to addressing treat-to-target strategies is the cultural stigma towards the disease itself, alongside stigma and historical mistrust of Western medicine and surgery. To backtrack a bit, it’s important to recognize that there is poor IBD awareness among both patients and physicians in South Asia. Additionally, there is a stigma around tarnishing your family’s good name by revealing that someone within the family has such a serious condition, not to mention a bowel condition, and at such a young age. These reputational concerns plus poor disease state awareness compound the cultural taboos around bowel-related conditions, which leads to many people choosing not to go to the doctor to address their symptoms.
There is also a mental health impact in all of this: In an upcoming paper by SAIA’s mental health specialists, Tiffany Taft, PhD, Anjali Pandit, PhD, and patient advocates Madhura Balasubramaniam, a PhD scholar, and myself, we determined that there are significantly higher rates of post-traumatic stress in South Asian patients compared to their white Caucasian counterparts. These are all things the community must contend with when considering the delivery of culturally competent care in the West, and even in South Asia.
Healio: How do you propose the global GI community help to mediate some of these barriers to care?
Aswani-Omprakash: SAIA is currently addressing professional development on the Pakistani side by hosting CME events in conjunction with Parsa Trust/Project ECHO on the ground to deliver education to primary care physicians and gastroenterologists with regard to IBD, its epidemiology, GI mimics such as GITB, very early onset (VEO) IBD, treat-to-target strategies, advanced therapies and how to prescribe them, as well as extraintestinal manifestations, diet and mental health.
The program in Pakistan is being spearheaded by Tauseef Ali, MD, Shanil Kadir, MBBS, FRCP, Sabina Ali, MD, Japla Devi, MBBS, and myself. SAIA is also hosting monthly ‘tweetorials’ via our IBD Journal Club led by Ali. IBD Club encourages GI fellows to share key IBD research to educate #GITwitter on various aspects of care around IBD.
SAIA is also currently working on developing AI models to distinguish between GITB and CD via two of our physician board members, Parakkal Deepak, MBBS, MS, from Washington University in St. Louis, and Vishal Sharma, MD, from Post Graduate Institute (PGI) in Chandigarh, India. These collaborations via SAIA are necessary to help understand the science and spearhead methods to improve patient quality of life.
To address the cultural stigmas towards the disease itself,medication or surgery uptake, Neil Nandi, MD, FACP, Sumit Bhatia MD, DM, Balasubramaniam and myself are leading an effort to educate patients and their caregivers via live educational programming. Moreover, the patient advocacy arm of SAIA is leading an effort to educate patients in our patient support group, IBDesis Facebook Community (https://www.facebook.com/groups/ibdesis).
All in all, the work we are doing within SAIA is multistakeholder advocacy to push the bounds of care for our South Asian IBD population.
Healio: What additional research is needed?
Aswani-Omprakash: There is a lot of additional research needed for the South Asian IBD community. It is almost uncharted territory as there is so little known about IBD in our community, and SAIA is working to pave the path forward. There is little understanding around phenotypes of IBD by race or ethnicity, in general. Moreover, it is not understood how we respond to various medications, which if it existed, would allow for the development of precision medicine for a variety of racial and ethnic communities living with IBD.
South Asians are not even broken down correctly within demographic data in the U.S. We are classified as Asian and there are so many subgroups in the ‘Asian’ category that it makes understanding subgroups of Asian populations’ disease presentation very difficult. There is a lot of work to be done and we are committed to making it happen. SAIA recently won $25k in seed money from Bristol Myers Squibb and Lyfebulb to initiate important research work for our community.
Healio: How does this call to action inform care for this patient population going forward?
Aswani-Omprakash: In our opinion, the future is very bright for the South Asian IBD population. With a dedicated nonprofit now in the space, we are pushing the envelope for improved patient education, professional development and research. There is no doubt we will learn more and be able to turn some of the challenges to care into opportunities to improve quality of life for our patient population.
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