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The person sitting next to you at work or on the bus may have IBD, but you’d most likely never know. While the estimated 10 million people worldwide living with this chronic disease regularly experience abdominal pain, fatigue and persistent diarrhea, many of them appear relatively healthy. And these symptoms can be severe to the point of debilitating, making it very difficult for these patients to go to work, school or be productive.

“Living with IBD is like having a backpack on your shoulders,” said Luisa Avedano, chief executive officer of the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA). “Sometimes it’s light, and you don’t realize it’s there. Sometimes it’s heavy, making it difficult—or even impossible—to walk.”

On this year’s World IBD Day, the goal is to “make the invisible visible.” Avedano, EFCCA members and other IBD patient advocates from all over the world are working to uncover the aspects of IBD that are not always obvious to others. Avedano believes that raising awareness of IBD is ultimately critical to helping improve the lives of people who are affected by this disease.

The Invisible Costs of IBD

Crohn’s disease and ulcerative colitis, the two most common forms of IBD, accounted for 1.3 million doctor visits and 92,000 hospitalizations in one year in the U.S. alone. Those visits really add up; costs for treating IBD have been estimated to be higher than $6.3 billion per year.

But that staggering figure doesn’t even take into account some of the “invisible” costs, such as lost work or school days and the cost of childcare during treatment, which could add another $5.5 billion per year. Avedano believes that a clear understanding of both the direct and hidden indirect costs of IBD is needed to make the case for investing in new ways to address these diseases.

“A big part of the costs is not often taken into consideration,” she said. “We need to shift the discussion to the broader idea of the real costs of dealing with IBD.”

To that end, EFCCA is surveying people in Europe who have IBD about their indirect costs in hopes of improving outcomes and reducing costs.


Beyond the Physical

Pain may be an obvious symptom of living with IBD, but the emotional aspects, such as stress and anxiety, are some of the many “invisible” obstacles, according to Avedano.

Even during remission, a study reported that up to 35 percent of people living with IBD experience anxiety or depression. During a relapse, that number jumps to a staggering 80 percent for anxiety and 60 percent for depression. Anxiety and depression can negatively affect an individual’s work and social lives and undermine their happiness. In short, the emotional impact potentially creates a bad situation even worse for these patients.

This emotional distress can be rooted in the physical pain and the unpredictability of these diseases. “You may be okay today, but you’re never sure how you’ll feel the next day,” Avedano said. “That’s sometimes difficult to explain to people who don’t understand the disease.”

By raising awareness of the “invisible” emotional impact of IBD, Avedano believes that doctors—as well as friends and family—can help people better cope with the disease. While avoiding stress and anxiety may be impossible, patients can find ways to manage those feelings. Talking with other people about their feelings in and of itself can help.

We’re trying to make all the stakeholders understand that an important way to manage and overcome IBD is to be united.

Waiting on a Diagnosis

The disease is so “invisible” that it often takes a while for patients to be diagnosed. A European survey reported that 45 percent of patients waited more than a year before getting diagnosed with IBD, and 17 percent waited longer than five years. In a U.S. survey, patients with IBD saw more than three doctors on average before being diagnosed correctly.

The problem is that the symptoms of IBD aren’t specific, so patients are often misdiagnosed by their primary physician. Awareness is key – earlier diagnosis leads to earlier treatment and improved outcomes for patients, according to Avedano.

One way to reduce the severity of the invisible aspects of IBD, including the direct and indirect costs and the emotional toll the disease takes on people and their loved ones, is to diagnose it early and treat it effectively. But treatment remains a challenge. While IBD is currently treated with several classes of medications, there is no cure. Increased awareness of the disease will also bring more attention to the need for continued research for Crohn’s disease and ulcerative colitis.

EFCCA is raising awareness across more than 50 countries for World IBD Day by holding events and highlighting famous landmarks throughout Europe in purple – the official color for IBD awareness. Avedano herself is proud to help spread the word. She wants every patient to know they are not alone. “We’re trying to make all our stakeholders understand that an important way to manage and overcome IBD is to be united.”

To learn more about trends in IBD, listen to our recent “Why Is IBD on the Rise?” podcast.

More people are being diagnosed with Crohn’s disease and ulcerative colitis than ever before, but researchers aren’t exactly sure why. A variety of factors including genetics, weakened immune systems and the environment may be at play.

In this podcast produced for this year’s Crohn’s and Colitis Awareness Week, Cathy Ferrone, director of patient advocacy at Celgene, and Laura Wingate, senior vice president of Education, Support and Advocacy at the Crohn’s and Colitis Foundation, discuss the rise in worldwide incidence rates of inflammatory bowel disease and why research in this area remains so important.

 

 


CATHY FERRONE FROM CELGENE AND LAURA WINGATE FROM CROHN’S AND COLITIS FOUNDATION DISCUSS THE RISE IN INFLAMMATORY BOWEL DISEASE.

 

To learn more about the lifelong struggle of having an inflammatory bowel disease, read “What It’s Really Like to Live with Ulcerative Colitis.”

To explore the Crohn’s & Colitis Foundation’s resources available to patients, caregivers and health care professionals, visit their website at http://www.crohnscolitisfoundation.org/ or call 1-888-My-Gut-Pain.
 

Many of the 1.6 million Americans living with inflammatory bowel disease (IBD) struggle to find an effective treatment, leaving them with pain, fatigue and other symptoms that directly affect their lives but may not be obvious to others. Although more than 380 active clinical trials are exploring investigational treatment options for the two most common forms of IBD—Crohn’s disease and ulcerative colitis—many patients either don’t know of these studies or don’t understand the possible benefits of participating.

As patients and advocates work to bring visibility to this disease during this year’s Crohn’s and Colitis Awareness Week (December 1-7), Dr. Bruce Sands, a gastroenterologist at Mount Sinai Hospital and the Icahn School of Medicine at Mount Sinai in New York, explains why some people living with IBD could benefit from discussing clinical trials with their doctors.

DR. BRUCE SANDS, A GASTROENTEROLOGIST AT MOUNT SINAI Hospital and the Icahn School of Medicine at Mount Sinai IN NEW YORK, EXPLAINS WHY SOME PEOPLE LIVING WITH IBD COULD BENEFIT FROM DISCUSSING CLINICAL TRIALS WITH THEIR DOCTORS.

DR. BRUCE SANDS, A GASTROENTEROLOGIST AT MOUNT SINAI Hospital and the Icahn School of Medicine at Mount Sinai IN NEW YORK, EXPLAINS WHY SOME PEOPLE LIVING WITH IBD COULD BENEFIT FROM DISCUSSING CLINICAL TRIALS WITH THEIR DOCTORS.

Why are some people living with IBD unaware that there are clinical trials for their disease?

“IBD clinical trials usually recruit patients who have active, flaring disease. But many patients on existing therapies who may still be flaring are not being cared for by doctors involved with trials. So these doctors may not be prepared to discuss clinical trials as an option. These patients can consider getting another opinion from a doctor at a medical center that offers IBD clinical trials. A good resource for IBD patients to learn more is ClinicalTrials.gov.”

How do you address patients’ concerns about enrolling in a trial?

“Patients feel more comfortable about enrolling when they understand the process. I try to explain the different stages to them. Such as, in Phase 1, researchers focus on evaluating the safety of a new treatment. A treatment doesn’t get to Phase 2 or Phase 3 until we know more about the medication’s safety. At each later stage, more patients take part, and researchers gain better knowledge of the treatment’s safety and efficacy profile.”

“Sometimes, patients hesitate to take part because they worry they will receive a placebo and be left untreated. I tell them that in almost every IBD trial, the investigational therapy is added on top of their existing medication. So they will not be left untreated. Furthermore, most studies allow all participating patients access to the investigational medication after eight to 12 weeks.”

We continue to see progress by studying investigational medications that may provide patients with better symptom relief and disease control.

What do you tell patients who qualify for a clinical trial?

“I explain that there are two big reasons why they should consider enrolling in a clinical trial. First, a clinical study may give them access to a medication that works for them.”

“Second, if people with Crohn’s disease and ulcerative colitis don’t enroll in trials, we will never see advances in the treatment of these diseases. Voluntary patient participation has been essential to the development of new treatment options over the last two decades and will continue to be so in the future.”

Why is it important that we continue to explore new treatments for Crohn’s and ulcerative colitis?

“We have yet to find a medication that works for every person with IBD. And while some existing treatments may work for some patients at first, their effectiveness can wear off over time. Meanwhile, the incidence of IBD is rising across the globe—in the developed world and also countries such as India and China.”

“Over time, we hope to understand which patients do better with which medications through clinical trials. But at this point, we simply need more treatment options.”

How hopeful are you about the future of IBD treatment?

“More than 200 genes are thought to contribute to the risk of Crohn’s disease and ulcerative colitis. Given that complexity, and how the biology differs from person to person, achieving a cure may be very difficult. While we all hope for a cure someday, we continue to see progress by studying investigational medications that may provide patients with better symptom relief and disease control.”

To learn why targeted therapies could be an important therapeutic option for IBD patients, read “Interest Grows in Targeted IBD Research.”

Many people living with moderately to severely active inflammatory bowel disease (IBD) are looking for additional treatment options to help them to cope with the physical and emotional burdens of their disease. Therapies called biologics that target a protein relevant to the immune system called tumor necrosis factor (TNF) are effective for many IBD patients. However, not everyone responds to these treatments. Now, investigational therapies that target other immune pathways are showing promise in clinical trials.

Dr. Brian G. Feagan, director of clinical trials at the Robarts Research Institute, SAYS the Inflammatory bowel disease medical community is increasingly interested in therapies that target sites of inflammation.

Dr. Brian G. Feagan, director of clinical trials at the Robarts Research Institute, SAYS the Inflammatory bowel disease medical community is increasingly interested in therapies that target sites of inflammation.

As more data on these IBD therapies come out of this year’s World Congress of Gastroenterology at ACG2017, Dr. Brian G. Feagan, director of clinical trials at the Robarts Research Institute, explains why the medical community is increasingly interested in therapies that target pathways associated with inflammation in the two most common forms of IBD, ulcerative colitis and Crohn’s disease.

Why is it important to develop targeted therapies for patients with IBD?

“Before biologic therapies were approved for IBD, we relied on steroids and immunosuppressive agents that broadly suppressed the immune system. We didn’t know exactly how these treatments worked but did know that they hit many different pathways. They were not very selective. For some patients whose ulcerative colitis or Crohn’s disease is caused by a particular pathway, these broad-spectrum agents may or may not hit that pathway, leaving some IBD patients without an effective treatment.”

People feel like they cannot plan their lives with the disease, but the continued investment in research is giving them hope.

How did the biologics change IBD treatment for patients?

“The biologics target a single protein that plays a role in the development of IBD, called TNF. Before the success of these anti-TNF therapies, the medical community didn’t think that blocking a single molecule or pathway would be effective. They believed that a combination of pathways was responsible for disease and that broad-spectrum therapy was needed. Clinical trials proved that theory wrong, at least for some patients. We have learned a lot about TNF blockers in the last 20  years.”

To learn why researchers must continue to explore new treatment options for IBD, read the “World IBD Day: Current Treatments for IBD Not Meeting Patient Needs” infographic.

To learn why researchers must continue to explore new treatment options for IBD, read the “World IBD Day: Current Treatments for IBD Not Meeting Patient Needs” infographic.


How have advances in understanding IBD opened the door for additional targeted therapies?

“Now that we know a single pathway can make a difference, as with TNF, researchers have started to look for other specific pathways associated with IBD. We are learning more about how these pathways control the immune response, interact with bacteria in our gut and are associated with complications of the disease, such as blockages in the intestine (strictures) and inflammatory tracts between the bowel and other organs, most commonly the skin (fistulas). This focus on specific pathways has evolved out of oncology, where researchers look for disease-related pathways and then use therapies that target specific pathways in individual patients. We haven’t quite gotten there in IBD, but that is the goal.”

Why is new research important for patients?

“People with ulcerative colitis and Crohn’s disease deal with substantial mental and social disabilities. The embarrassment of having IBD can negatively affect their lives. People feel like they cannot plan their lives with the disease, but the continued investment in research is giving them hope.”

To learn why researchers must continue to explore new treatment options for IBD, read the “World IBD Day: Current Treatments for IBD Not Meeting Patient Needs” infographic.

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For many years, inflammatory bowel disease (IBD) was a disease of the Western world—most diagnoses occurred in Europe, North America and Australia. Today, however, IBD incidence is on the rise on nearly every continent.

Some 5 million people around the world have IBD, and in the United States alone, the disease is estimated to cost the healthcare system more than $6 billion a year. In the fast-growing populations of China and India, rates of the two main subtypes of IBD—ulcerative colitis and Crohn’s disease—are beginning to rise.

“In countries where these diseases have been ignored in the past, we’re now seeing them appear for the first time,” Dr. Jean-Frederic Colombel, director of the Susan and Leonard Feinstein IBD Clinical Center at Icahn School of Medicine at Mount Sinai, said. “It’s becoming a worldwide epidemic.”

Inflammatory Bowel Disease: A Growing Global Problem

IBD is characterized by inflammation of the digestive system that can cause chronic nausea, diarrhea, cramping and weight loss. The disease often surfaces when patients are in their teens, twenties or thirties, leading to many years of pain and disability as well as costly monitoring.

First described in the 1930s,IBD has recently become much more common. Most studies suggest a significant rise in the number of cases of Crohn’s disease and ulcerative colitis worldwide since 1960. Between 2000 and 2009, the number of children hospitalized with IBD in the United States jumped by 64 percent.

The current hypothesis is that changes in lifestyle are making people more susceptible to IBD. These changes could include diet, cleanliness, and pollution exposure.

Scientists don’t fully understand what causes IBD, although studies suggest that genetics and bacteria that live in the human gut may be involved. “The current hypothesis is that changes in lifestyle are making people more susceptible to IBD,” explained Colombel. “These changes could include diet, cleanliness and pollution exposure.” These factors can cause changes in the gut bacteria, increasing the risk for IBD.

While the causes remain unclear, a cure has been even more elusive. Although surgery is an option, colectomy for ulcerative colitis is associated with significant morbidity, and Crohn’s disease may recur even after surgical resection of the small bowel or colon. As a result, most patients turn toward medicines to manage their disease, and new treatment options are being explored in clinical trials.

Gastroenterologist Dr. Jean-Frederic Colombel has witnessed the global rise of inflammatory bowel disease first hand at Mount Sinai in New York City.

Gastroenterologist Dr. Jean-Frederic Colombel has witnessed the global rise of inflammatory bowel disease first hand at Mount Sinai in New York City.

“We have made a lot of progress with the treatments we have now,” Colombel said. “We can heal some patients and block the progression of the disease towards bowel damage and disability.”

But Colombel stresses that early detection is critical to improving outcomes in IBD.

“There is a window of opportunity for treatment; when you miss this window, it becomes much more difficult to manage,” Colombel said. “Unfortunately, there is often a long delay between the onset of symptoms and when a patient is actually diagnosed.”

In fact, it usually takes more than a year—and sometimes a few years—for people to be diagnosed after their symptoms appear. In countries where IBD is a more recent phenomenon, this delay may be even longer.

Patients and primary care physicians need to be aware of the signs of IBD, so a proper diagnosis can be made. Gastroenterologists around the world must also be more aware and better equipped to treat the growing and complex burden of IBD.