We have come through an unprecedented time with exciting gains and immeasurable gratitude. Our staff, researchers, partners, and volunteers banded together — whether virtually or in-person — to make major advancements in our priority areas of research, patient programs, and advocacy.
We are proud to bring you the summer 2022 issue of our Impact Report, “Accelerating Bold Discoveries.” We are now providing you with these reports three times a year — every spring, summer, and fall/winter — to keep you informed of our ongoing achievements in a timely manner. The annual summer issue will also include our financials, which you will find at the end of this report.
This Impact Report is a testament to our promise to you — our supporters. Your stories, resilience, and hope inspire us to be relentless in our efforts to change the lives of people living with inflammatory bowel disease (IBD) and discover cures. We encourage you to read on to learn how we have:
-
Leveraged technology to invest in a “smart pill” that delivers medicine directly to diseased areas in the intestines.
-
Made progress on a new blood test that predicts which IBD patients are at high risk of having multiple relapses within the following 12—18 months.
-
Led studies on how diet and nutrition can help you manage your IBD symptoms.
-
Advocated so that decisions about what medication you take remains between you and your doctor, not you and your insurance company.
-
Launched our new Spanish-language website to continue our efforts to engage patients and caregivers who represent the diversity of the IBD community.
While our chapters and volunteers maintained their strong connections and support networks virtually, they are thrilled to be meeting in person again. In this issue, our chapters reflect on what they learned from hosting virtual events while exploring a return to in-person activities.
This report also reflects our commitment to our 2021-2024 Strategic Plan, which you can easily access on our website. We developed it to be focused and inclusive with clear, measurable goals. You’ll see that our accomplishments outlined here mirror our mission objectives.
Your support fuels our work to pioneer transformational research, improve remission rates, support the needs of patients and caregivers, and advocate for access to the care patients need. You can be assured that we will remain steadfast in our goal to create a new future for you, your loved ones, and all those affected by Crohn’s disease and ulcerative colitis.
With warmest regards,
Most currently available IBD medications need to reach the intestine to be effective, but to get there they first must make their way through the bloodstream, which can impact other organs and lead to unwanted side effects. A new “smart pill” aims to deliver medicine directly to the colon, which would increase efficacy while minimizing absorption into the bloodstream and related side effects.
This device—also known as a drug delivery system capsule—is being developed by Biora Therapeutics, a biotechnology company. Using funding from our venture philanthropy program, IBD Ventures, Biora Therapeutics will test whether this smart pill can be used to deliver medication directly to the colon of ulcerative colitis patients.
This pill, which contains a tiny computer chip, can be loaded with medication and programmed to travel to the cecum (first part of the large intestine or colon). Once it reaches its targeted destination, it uses a mini syringe or piston to release the drug.
Biora Therapeutics has already demonstrated, using imaging studies, that a version of this smart pill works in healthy people. Thanks to the Foundation’s IBD Ventures program investment, they are now testing a smaller, upgraded version in healthy people and will soon test it in ulcerative colitis patients.
Most currently available IBD medications need to reach the intestine to be effective, but to get there they first must make their way through the bloodstream, which can impact other organs and lead to unwanted side effects. A new “smart pill” aims to deliver medicine directly to the colon, which would increase efficacy while minimizing absorption into the bloodstream and related side effects.
This device—also known as a drug delivery system capsule—is being developed by Biora Therapeutics, a biotechnology company. Using funding from our venture philanthropy program, IBD Ventures, Biora Therapeutics will test whether this smart pill can be used to deliver medication directly to the colon of ulcerative colitis patients.
This pill, which contains a tiny computer chip, can be loaded with medication and programmed to travel to the cecum (first part of the large intestine or colon). Once it reaches its targeted destination, it uses a mini syringe or piston to release the drug.
Biora Therapeutics has already demonstrated, using imaging studies, that a version of this smart pill works in healthy people. Thanks to the Foundation’s IBD Ventures program investment, they are now testing a smaller, upgraded version in healthy people and will soon test it in ulcerative colitis patients.
When patients are first diagnosed with IBD, they have no idea what the future might hold for them. Will their condition remain mild? Or will they face frequent flares and related complications? A new blood test, called PredictSURE IBD, appears to be able to predict which patients are at high risk of having multiple relapses within the following 12-18 months. Research conducted in Europe suggests that this test is highly accurate, and so we need proof that it works just as well in a more diverse group of patients.
Thanks to Foundation funding, a U.S.-based trial called PRECIOUS (Predicting Crohn’s & Colitis Outcomes in the United States) is well on its way. PredictImmune, the company that developed the test, has recruited 93 patients into this study (roughly half of its recruitment goal), 28 of whom have completed more than one year of follow-up. Fifteen practice sites, many of which are part of the Foundation’s Clinical Research Alliance, are currently recruiting additional participants. The investigators expect PRECIOUS to be completed by June 2023.
When patients are first diagnosed with IBD, they have no idea what the future might hold for them. Will their condition remain mild? Or will they face frequent flares and related complications? A new blood test, called PredictSURE IBD, appears to be able to predict which patients are at high risk of having multiple relapses within the following 12-18 months. Research conducted in Europe suggests that this test is highly accurate, and so we need proof that it works just as well in a more diverse group of patients.
Thanks to Foundation funding, a U.S.-based trial called PRECIOUS (Predicting Crohn’s & Colitis Outcomes in the United States) is well on its way. PredictImmune, the company that developed the test, has recruited 93 patients into this study (roughly half of its recruitment goal), 28 of whom have completed more than one year of follow-up. Fifteen practice sites, many of which are part of the Foundation’s Clinical Research Alliance, are currently recruiting additional participants. The investigators expect PRECIOUS to be completed by June 2023.
When a patient leaves a doctor’s office or is discharged from the hospital, one simple question might shed light on how they’ll fare in the future: “How confident are you that you can manage your IBD?”
New Foundation-funded research suggests that this question, which is a measure of “health confidence” (a patient’s belief in their ability to manage or control their condition), is directly linked to better health outcomes. The study, recently published in our Inflammatory Bowel Diseases journal, is based on more than 17,000 surveys of IBD patients at 27 gastroenterology practices that participate in IBD Qorus, our national quality of care collaborative.
The study reveals that there was a strong association between health confidence scores and measures of disease activity: Patients with “high” health confidence (defined as at least an 8 out of a maximum score of 10) are significantly less likely to have a flare within the following six to 12 months. They are also less likely to use steroids or opioids during that time.
“Whether patients feel like they can handle their disease impacts so much,” says lead study author Chung Sang Tse, MD, of the University of Pennsylvania. “Assessing confidence also presents an opportunity for providers to intervene, such as by directing patients with low confidence to education resources that can help inform and empower them.”
Of course, health confidence can fluctuate, and patients who started with low disease activity are generally more apt to report high levels of confidence later. But even after the researchers adjusted for baseline disease activity, they determined that those who were in the most confident group were 15% less likely to flare during the study period.
“Is it a self-fulfilling prophecy? There may be some of that, but that’s the thing with health behaviors,” says Tse. “If you believe you can do it, you’ll be more apt to do the things that help you succeed,” such as take your medications as prescribed and show up for checkups and important tests like colonoscopies. “It’s more than just wishful thinking.”
When a patient leaves a doctor’s office or is discharged from the hospital, one simple question might shed light on how they’ll fare in the future: “How confident are you that you can manage your IBD?”
New Foundation-funded research suggests that this question, which is a measure of “health confidence” (a patient’s belief in their ability to manage or control their condition), is directly linked to better health outcomes. The study, recently published in our Inflammatory Bowel Diseases journal, is based on more than 17,000 surveys of IBD patients at 27 gastroenterology practices that participate in IBD Qorus, our national quality of care collaborative.
The study reveals that there was a strong association between health confidence scores and measures of disease activity: Patients with “high” health confidence (defined as at least an 8 out of a maximum score of 10) are significantly less likely to have a flare within the following six to 12 months. They are also less likely to use steroids or opioids during that time.
“Whether patients feel like they can handle their disease impacts so much,” says lead study author Chung Sang Tse, MD, of the University of Pennsylvania. “Assessing confidence also presents an opportunity for providers to intervene, such as by directing patients with low confidence to education resources that can help inform and empower them.”
Of course, health confidence can fluctuate, and patients who started with low disease activity are generally more apt to report high levels of confidence later. But even after the researchers adjusted for baseline disease activity, they determined that those who were in the most confident group were 15% less likely to flare during the study period.
“Is it a self-fulfilling prophecy? There may be some of that, but that’s the thing with health behaviors,” says Tse. “If you believe you can do it, you’ll be more apt to do the things that help you succeed,” such as take your medications as prescribed and show up for checkups and important tests like colonoscopies. “It’s more than just wishful thinking.”
One of the first questions newly-diagnosed patients ask is, “What should I eat?” Right now, there are few clear answers, but Foundation-supported studies are bringing us closer to new insights about using diet as an adjunct to medication for controlling IBD.
Thanks to a grant from our Precision Nutrition initiative, researchers at the University of California, San Diego have completed the first phase of a project that explores the connection between the foods people eat, the microbiome in the gut, and IBD disease activity. The scientists use machine learning technology to generate "food-specific metabolomic signatures" for thousands of popular foods, so they can now determine which foods someone has consumed by analyzing the metabolic end products that appear in their body after digestion. They also found that certain foods were associated with less diversity of gut microbes and more severe disease. The next step will be to corroborate these findings, which would support future studies designed to evaluate a new dietary intervention for people with IBD.
Other Foundation-funded research, at Scotland’s Glasgow University, is focusing on children who reintroduce solid foods into their diet after reaching remission on an exclusively formula-based, liquid diet (enteral nutrition). The goal is to identify triggers of relapse so that future patients could be instructed to avoid those foods. They will also identify the immunological and microbiological drivers of relapse in response to these food triggers. Enrollment is underway, with ten leading pediatric IBD centers in Scotland and England participating in this study.
The Precision Nutrition Initiative is made possible by the generous support of Jonathan D. Rose, MD, PhD, Chair of the Crohn’s & Colitis Foundation’s Intestinal Pathology Research Program.
One of the first questions newly-diagnosed patients ask is, “What should I eat?” Right now, there are few clear answers, but Foundation-supported studies are bringing us closer to new insights about using diet as an adjunct to medication for controlling IBD.
Thanks to a grant from our Precision Nutrition initiative, researchers at the University of California, San Diego have completed the first phase of a project that explores the connection between the foods people eat, the microbiome in the gut, and IBD disease activity. The scientists use machine learning technology to generate "food-specific metabolomic signatures" for thousands of popular foods, so they can now determine which foods someone has consumed by analyzing the metabolic end products that appear in their body after digestion. They also found that certain foods were associated with less diversity of gut microbes and more severe disease. The next step will be to corroborate these findings, which would support future studies designed to evaluate a new dietary intervention for people with IBD.
Other Foundation-funded research, at Scotland’s Glasgow University, is focusing on children who reintroduce solid foods into their diet after reaching remission on an exclusively formula-based, liquid diet (enteral nutrition). The goal is to identify triggers of relapse so that future patients could be instructed to avoid those foods. They will also identify the immunological and microbiological drivers of relapse in response to these food triggers. Enrollment is underway, with ten leading pediatric IBD centers in Scotland and England participating in this study.
The Precision Nutrition Initiative is made possible by the generous support of Jonathan D. Rose, MD, PhD, Chair of the Crohn’s & Colitis Foundation’s Intestinal Pathology Research Program.
Gastroenterologists have long complained that health insurance protocols frequently lead to treatment delays and poorer health outcomes for IBD patients. Now we have objective proof of the detrimental impact of these obstacles.
As many IBD patients know all too well, getting started on the proper therapy isn’t as simple as having a doctor write the prescription. Most health insurance companies require that providers first obtain prior authorization for certain drugs. They also often insist that patients try and fail less expensive treatment before agreeing to cover the requested medication, a practice known as mandated step therapy, or “fail first.”
In a new study, sponsored in part by the Crohn’s & Colitis Foundation and published in the journal Pediatrics, researchers studied the link between prior authorization protocols and patient outcomes in 190 children with IBD who were on biologic drugs.
The researchers assessed whether differences in insurance protocols that preceded the initiation of the desired biological therapy were associated with how the children were faring 6 months later.
The findings revealed that it took, on average, 21 days for a patient to start the desired biologic from the time the physician and patient (or patient’s parents) decided to try it. If prior authorization was needed, biologic initiation didn’t start until an average of 31 days. And, if it was deemed “complicated”—meaning it entailed an appeal, mandated step therapy, or peer to peer review—patients didn’t start the treatment until about day 36.
These delays had serious ramifications: Patients who had to wait for prior authorizations were 13% more likely to visit the emergency room, be hospitalized, or require GI surgery within six months from the time the study began. They were also 14% more likely to be dependent on steroids at that point.
The problem, says study co-author Frank I. Scott, MD, assistant professor at the University of Colorado Anschutz Medical Campus, is that these insurance-related delays meant that many patients were in the midst of a major flare by the time they got the green light to start a biologic.
Scott also noted that all the prior authorization requests for patients in this study were eventually granted, which suggests that insurers were simply delaying the inevitable.
“The goal of this study, and others focusing on adults, is to show the insurers that you can kick the can down the road, and delay maybe one or two doses to the next fiscal year, but you’ve also triggered downstream medical events that are almost certainly more expensive than delaying those one or two doses,” says Scott.
“The study provides us with clear evidence of how “fail first” protocols can endanger the health of IBD patients who really need to receive their prescribed medication at the time of the prescription,” says Caren Heller, MD, MBA, Chief Scientific Officer of the Crohn’s & Colitis Foundation. “We will continue to fight for step therapy reform to ensure that critical decisions about prescribed medications remain between doctors and their patients.”
The Crohn’s & Colitis Foundation and our tireless volunteers have played an integral role in getting mandated step therapy reform legislation passed in 31 states. We’re now working toward passing national legislation via the Safe Step Act. Learn more and find out how you can help by visiting steptherapy.
Gastroenterologists have long complained that health insurance protocols frequently lead to treatment delays and poorer health outcomes for IBD patients. Now we have objective proof of the detrimental impact of these obstacles.
As many IBD patients know all too well, getting started on the proper therapy isn’t as simple as having a doctor write the prescription. Most health insurance companies require that providers first obtain prior authorization for certain drugs. They also often insist that patients try and fail less expensive treatment before agreeing to cover the requested medication, a practice known as mandated step therapy, or “fail first.”
In a new study, sponsored in part by the Crohn’s & Colitis Foundation and published in the journal Pediatrics, researchers studied the link between prior authorization protocols and patient outcomes in 190 children with IBD who were on biologic drugs.
The researchers assessed whether differences in insurance protocols that preceded the initiation of the desired biological therapy were associated with how the children were faring 6 months later.
The findings revealed that it took, on average, 21 days for a patient to start the desired biologic from the time the physician and patient (or patient’s parents) decided to try it. If prior authorization was needed, biologic initiation didn’t start until an average of 31 days. And, if it was deemed “complicated”—meaning it entailed an appeal, mandated step therapy, or peer to peer review—patients didn’t start the treatment until about day 36.
These delays had serious ramifications: Patients who had to wait for prior authorizations were 13% more likely to visit the emergency room, be hospitalized, or require GI surgery within six months from the time the study began. They were also 14% more likely to be dependent on steroids at that point.
The problem, says study co-author Frank I. Scott, MD, assistant professor at the University of Colorado Anschutz Medical Campus, is that these insurance-related delays meant that many patients were in the midst of a major flare by the time they got the green light to start a biologic.
Scott also noted that all the prior authorization requests for patients in this study were eventually granted, which suggests that insurers were simply delaying the inevitable.
“The goal of this study, and others focusing on adults, is to show the insurers that you can kick the can down the road, and delay maybe one or two doses to the next fiscal year, but you’ve also triggered downstream medical events that are almost certainly more expensive than delaying those one or two doses,” says Scott.
“The study provides us with clear evidence of how “fail first” protocols can endanger the health of IBD patients who really need to receive their prescribed medication at the time of the prescription,” says Caren Heller, MD, MBA, Chief Scientific Officer of the Crohn’s & Colitis Foundation. “We will continue to fight for step therapy reform to ensure that critical decisions about prescribed medications remain between doctors and their patients.”
The Crohn’s & Colitis Foundation and our tireless volunteers have played an integral role in getting mandated step therapy reform legislation passed in 31 states. We’re now working toward passing national legislation via the Safe Step Act. Learn more and find out how you can help by visiting steptherapy.
Our strategic focus on diversity and inclusion means striving to reach everyone with IBD, including those for whom Spanish is their primary language. That’s why we have taken the most important educational content from our website and translated it for this community on our new Spanish language webpages. This site now features content on a wide range of topics about Crohn’s disease and ulcerative colitis, including information about diagnosis, treatment, nutrition, mental health, and more.
“This has been a priority for some time,” says Catherine Soto, the Foundation’s Senior Director of Patient Education and Support. “We want patients and caregivers who need information in Spanish to be able to access and understand the information that’s so pivotal to the IBD journey.”
As part of this effort, the Foundation has also translated several informative videos into Spanish and expanded its online library of Spanish-language brochures. Plans to launch a Facebook group for the Hispanic/Latino/Latinx community and announce these developments via a public service campaign are underway.
Our strategic focus on diversity and inclusion means striving to reach everyone with IBD, including those for whom Spanish is their primary language. That’s why we have taken the most important educational content from our website and translated it for this community on our new Spanish language webpages. This site now features content on a wide range of topics about Crohn’s disease and ulcerative colitis, including information about diagnosis, treatment, nutrition, mental health, and more.
“This has been a priority for some time,” says Catherine Soto, the Foundation’s Senior Director of Patient Education and Support. “We want patients and caregivers who need information in Spanish to be able to access and understand the information that’s so pivotal to the IBD journey.”
As part of this effort, the Foundation has also translated several informative videos into Spanish and expanded its online library of Spanish-language brochures. Plans to launch a Facebook group for the Hispanic/Latino/Latinx community and announce these developments via a public service campaign are underway.
For the past two years, many of our much-loved fundraising events were forced to go virtual. Now that people across the country are increasingly comfortable coming together, Crohn’s & Colitis Foundation chapters around the country are relishing the return to in-person activities.
“We were able to hold three in-person events in the fall of 2021 after being virtual for all of 2020. We made sure we were social distancing and asked people who were not vaccinated to wear masks, so I think those who attended felt safe. People were so happy to be there, and we were able to reference all the amazing work the Foundation did supporting patients throughout the pandemic. Being able to show that impact, along with the enthusiasm of our volunteers, is what made us so successful. Our staff is strong, but our volunteers are really what make our work happen; we could not do it without them.”
— Melissa Greer, executive director, Michigan chapter
“When we first resumed in-person events, not everyone was comfortable with them, but everyone was so supportive, flexible, and understanding. We had a volunteer chair for our December 2021 gala who wasn’t quite ready for in-person events, but as soon as she stepped down another volunteer jumped right in and took her place. We tried to be as COVID-conscious as possible, and those who attended in person seemed thrilled to be there. It ended up being our highest revenue-generating event ever. We raised $230,000 during our ‘fund the mission’ moment alone. I think most people are really happy to be back in person. Being on Zoom is just not the same as being able to stand next to someone and have a conversation.”
— Katie Keohane, executive director, South Florida chapter
“We learned some important lessons hosting virtual and hybrid events earlier in the pandemic. Having honorees pre-record a message, adding visual effects, and keeping the programs shorter worked very well. Our supporters, volunteers, and donors really embraced virtual events when they were necessary, but there’s just something special about being together. The energy in the room at our in-person fall gala was electrifying.
—Lisa Harding, senior executive director, Connecticut/Westchester chapter
“Hosting virtual events gave us the chance to include more people from farther-flung locations, but we’re glad to have returned to in-person events and will most likely stick with that going forward. But no matter how we connected during the past two years, our volunteers in the Carolinas never gave any kind of pushback. They’ve always understood the importance of the mission and known how to successfully deliver the message to their supporters. Our volunteers are everything.”
—Mandy Wellons Dimpsey, executive director, Carolinas Chapter
For the past two years, many of our much-loved fundraising events were forced to go virtual. Now that people across the country are increasingly comfortable coming together, Crohn’s & Colitis Foundation chapters around the country are relishing the return to in-person activities.
“We were able to hold three in-person events in the fall of 2021 after being virtual for all of 2020. We made sure we were social distancing and asked people who were not vaccinated to wear masks, so I think those who attended felt safe. People were so happy to be there, and we were able to reference all the amazing work the Foundation did supporting patients throughout the pandemic. Being able to show that impact, along with the enthusiasm of our volunteers, is what made us so successful. Our staff is strong, but our volunteers are really what make our work happen; we could not do it without them.”
— Melissa Greer, executive director, Michigan chapter
“When we first resumed in-person events, not everyone was comfortable with them, but everyone was so supportive, flexible, and understanding. We had a volunteer chair for our December 2021 gala who wasn’t quite ready for in-person events, but as soon as she stepped down another volunteer jumped right in and took her place. We tried to be as COVID-conscious as possible, and those who attended in person seemed thrilled to be there. It ended up being our highest revenue-generating event ever. We raised $230,000 during our ‘fund the mission’ moment alone. I think most people are really happy to be back in person. Being on Zoom is just not the same as being able to stand next to someone and have a conversation.”
— Katie Keohane, executive director, South Florida chapter
“We learned some important lessons hosting virtual and hybrid events earlier in the pandemic. Having honorees pre-record a message, adding visual effects, and keeping the programs shorter worked very well. Our supporters, volunteers, and donors really embraced virtual events when they were necessary, but there’s just something special about being together. The energy in the room at our in-person fall gala was electrifying.
—Lisa Harding, senior executive director, Connecticut/Westchester chapter
“Hosting virtual events gave us the chance to include more people from farther-flung locations, but we’re glad to have returned to in-person events and will most likely stick with that going forward. But no matter how we connected during the past two years, our volunteers in the Carolinas never gave any kind of pushback. They’ve always understood the importance of the mission and known how to successfully deliver the message to their supporters. Our volunteers are everything.”
—Mandy Wellons Dimpsey, executive director, Carolinas Chapter
On behalf of everyone at the Crohn’s & Colitis Foundation, thank you! Our efforts are fueled by our community of remarkable patients, caregivers, clinicians, researchers, volunteers and supporters who each day inspire us to keep working hard for better treatments and cures.
All year, you participate in our community events and encourage us with your stories of hope and resilience, and your commitment to raising funds for research and awareness of IBD and to making the lives of people living with IBD better.
We encourage you to continue your efforts and find your community of support through local events like our galas, Take Steps, Team Challenge, spin4 crohn’s & colitis cures, and more.
2021 Financials
More than 80 cents of every dollar the Crohn’s & Colitis Foundation spends goes to research, education, awareness building, and support services. “We are proud to be able to allocate such a large percentage of every dollar raised to advancing this critical mission and making life better for IBD patients across the country,” said Michael Osso president & CEO.
2021 Supporters
The following individuals and foundations have made important and significant contributions to the Crohn’s & Colitis Foundation in support of our mission programs. We are deeply grateful to them for their extraordinarily generous gifts.
2021 Research Awards & Donors
The following donors have made special gifts to the Crohn's and Colitis Foundation that support our research agenda. We extend our sincere gratitude for their commitment to our mission to improve patients' quality of life and discover cures.
View our 2021 Research Awards & Donors
Past Impact & Annual Reports
Read about the advances the Foundation has made in the IBD space.
2021 Financials
More than 80 cents of every dollar the Crohn’s & Colitis Foundation spends goes to research, education, awareness building, and support services. “We are proud to be able to allocate such a large percentage of every dollar raised to advancing this critical mission and making life better for IBD patients across the country,” said Michael Osso president & CEO.
2021 Supporters
The following individuals and foundations have made important and significant contributions to the Crohn’s & Colitis Foundation in support of our mission programs. We are deeply grateful to them for their extraordinarily generous gifts.
2021 Research Awards & Donors
The following donors have made special gifts to the Crohn's and Colitis Foundation that support our research agenda. We extend our sincere gratitude for their commitment to our mission to improve patients' quality of life and discover cures.
View our 2021 Research Awards & Donors
Past Impact & Annual Reports
Read about the advances the Foundation has made in the IBD space.