Crohn's disease and ulcerative colitis, together known as inflammatory bowel disease, or IBD, affected 7 million people globally as of 2023. Yet IBD is often misunderstood, underdiagnosed, and underresourced.
Frequently confused with the more commonly known irritable bowel syndrome, or IBS — which is a functional disorder of the gastrointestinal tract — IBD is an immune-mediated inflammatory condition that can cause serious illness and lead to multiple comorbidities. Once seen primarily as a concern in Europe and North America, its prevalence is now increasing in the Asia-Pacific region as well, imposing a rising burden on patients, caregivers, health care systems and economies.
The global burden of IBD is substantial and growing. IBD is associated with high rates of morbidity and disability as well as an increased risk for poor mental health and bowel cancer. It also poses a significant economic burden on individuals, health care systems and our society.
As of 2017, around 6.8 million people worldwide were living with IBD, with prevalence especially rising in the Asia-Pacific region, where incidence of IBD ranges from 0.5 to 3.4 per 100,000 individuals annually. In Asia alone, there are over 1.8 million people living with IBD. As Western diets and lifestyles become more common across the Asia-Pacific region, immune-mediated inflammatory conditions such as IBD are on the rise.
In response, the Global Alliance for Patient Access, known as GAfPA, convened IBD stakeholders in the Asia-Pacific region to identify unmet needs and develop a concrete set of priorities moving forward. In a recently released consensus statement, these stakeholders call for urgent, coordinated action to remove barriers to IBD care by promoting earlier diagnosis, individualized and holistic treatment, greater patient-clinician collaboration, and expanded research and policy support.
Devex spoke with Leanne Raven, chief executive officer of Crohn’s & Colitis Australia — one of the members of the consensus statement drafting committee — about the evolving burden of IBD in the region, the role of wrap-around care from multidisciplinary health teams, and how shared health care goals could help patients access the treatments they need.
This conversation has been edited for length and clarity.
What are some barriers to care, and what recommendations did the expert panel have in their consensus statement for removing those barriers?
The goal that we all agreed upon is the pursuit of remission, and we need more people living with IBD in remission. One of the biggest barriers remains delays in diagnosis and treatment. This is a common issue across the region.
In September, we had a great meeting with eight countries discussing the barriers to inflammatory bowel disease in the Asia-Pacific region. There, GAfPA released the consensus statement we have been drafting on how to remove those barriers.
Specifically, the consensus statement identified four shared goals stakeholders must work toward, including reducing the time to diagnosis and treatment, an emphasis on shared decision-making for care plans, treating beyond inflammation and optimizing psychological well-being and fostering greater global collaboration on the root causes of IBD.
“The goal that we all agreed upon is the pursuit of remission, and we need more people living with IBD in remission.”
—What further action is needed to ensure patients everywhere can reach remission?
We need greater awareness and prioritization of the pursuit of remission. Remission means that symptoms are well controlled, and results from tests show little disease activity. Over the past 10 years, we’ve seen important changes start to happen in treatments through research and the development of new therapies. However, not all of those treatments are accessible to patients because many are very expensive or lack government support. But now that we have this range of treatments, everyone, no matter where they live, should have access to optimal care. That’s why now is the time to actually work on this together and advocate for change.
Where are the greatest unmet needs for IBD patients, and which populations remain most forgotten?
In every country, people with IBD are overlooked. It’s a hidden condition; inflammation of the gastrointestinal tract is not something you can see.
In Australia, we call people with IBD the “frequent flyers of our health system” because they spend more time in hospital and emergency departments per case each year than the total cancer population. It’s a huge burden, but because it’s not usually something you’re going to die from, such as cancer, it doesn’t get the focus it should. And around three-quarters of people with IBD [in Australia] are of working age. But if their illness isn’t well managed, it impacts their ability to work and be productive and increases costs for the health system.
How can health systems shorten the time from diagnosis to effective treatment, particularly when it comes to access to biologics?
Biologics have been game changers for people with immune-mediated inflammatory conditions such as IBD, but access is commonly blocked by cost and system barriers. Patients often have to go through a stepwise process of failing other medications before becoming eligible.
I think education and awareness are important, too — both community awareness and among health professionals. In Australia, we’ve recently done some convenience advertising campaigns, including placing symptom-checker ads in public bathrooms.
Simple initiatives like this, where you’re raising awareness of IBD and providing information, can help shorten the time to diagnosis.
Beyond controlling inflammation, what should comprehensive IBD care include to address patients’ broader needs?
People with IBD often have comorbidities around mental health, particularly anxiety and depression. It’s been a major concern across the Asia-Pacific region — rates of anxiety and depression are high, and sadly, we’ve seen young people, particularly males in their 20s, die by suicide because they couldn’t cope with the burden of IBD.
That is why wrap-around care from a multidisciplinary health team is really essential. Depending on the stage of the condition, dietary changes may also be necessary, so having a dietitian as part of the team is extremely important.
A lot of people, particularly young people, go down different pathways before getting a diagnosis. You really need a full team of specialist care, nursing care, allied health professionals like psychologists and dietitians — and, at different times, other team members such as surgeons or stoma nurses. It needs to be a holistic team to support the person in managing this condition.
Shared decision-making is often cited as essential for individualized care plans. What does it look like in practice, and how can it become the standard across diverse care settings in the Asia-Pacific region?
There’s been movement across the Asia-Pacific region in developing tools to foster shared decision-making, but there are many different cultures in the region, and some people may find it hard to raise questions with specialists. Specialists are also often very time-poor and focused on medical treatment. That’s why having other team members, such as nurses, is so important, who may have a little bit more time to support patients in incorporating treatment into their lives and help them prepare questions for appointments.
Patients need support to engage with treatment: It doesn’t matter what a practitioner prescribes if the person isn’t actually taking it.
Looking ahead, what role can GAfPA and the broader global collaboration play in removing barriers and driving more patient-centered IBD care in the Asia-Pacific?
We’d like to see special programs set up — we call them “Living Well with IBD,” where people can be referred for the wrap-around care they so urgently need. This is especially important in countries with large geographies, where people in regional or remote communities face greater burdens because of limited access to care and affordability.
There’s also a real need for more research. We’re hopeful that this will lead to a better understanding of the causes of IBD and, ultimately, a cure in the not-too-distant future. We’ve seen how collaboration and investment have improved other conditions — and applying the same approach to IBD would certainly help.
Read the GAfPA consensus statement, Removing Barriers for Inflammatory Bowel Disease Patients in the Asia-Pacific Region, here, and check out Crohn’s & Colitis Australia’s IBD Symptom Checker.
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