Strategic science plan to change the future for the 3.2 million Americans living with this serious genetic autoimmune disorder
Beyond Celiac, the leading catalyst for a celiac disease cure in the United States, is celebrating Celiac Awareness Month this month with a laser-focus on its mission to advance the science of celiac disease. Outlined in its strategic science plan developed under the leadership of Chief Scientist and Strategy Officer Salvatore (Salvo) Alesci, MD, PhD, the organization is committed to addressing the many current barriers to a cure through four scientific priorities: evidence generation, translational research, clinical trials and drug repurposing.
“A cure means real treatment options so those with celiac disease can live healthy lives and eat without fear,” said Beyond Celiac CEO Alice Bast. “The large, diverse celiac disease community continues to suffer from high daily burdens in coping with the disease, but we firmly believe that with a strategic approach to funding focused research and the right strategic partnerships, an effective treatment or cure is possible by 2030.”
Celiac disease is poorly understood by many, including those making funding decisions at the federal level, some in the pharmaceutical industry, medical communities and others. The serious nature of the disease is underappreciated, and too many people remain undiagnosed.
Through its patient database Go Beyond Celiac, working with scientists exploring the disease’s non-GI symptoms, and initiatives such as its partnership with the National Minority Quality Forum to address health disparities in diagnosis and treatment, Beyond Celiac is collecting and analyzing comprehensive data on the burden of celiac disease and gluten sensitivity. This evidence generation will increase awareness of both the nature and scope of celiac disease, making a compelling case for larger investments from government agencies, pharmaceutical companies, biotech and more.
Lack of funding and strategic focus for research.
Beyond Celiac is funding promising translational research will that quickly move from scientific investigation to clinical use, speeding the development of treatments for patients. Recently, Beyond Celiac and Janssen announced a 2-year joint research grant program co-fund up to $1 million in research that will lead to an increased understanding of areas such as the gut microbiome, induction of immune tolerance and biomarkers of risk and progression.
As the nation’s top recruiting partner for celiac disease clinical trials, Beyond Celiac continues to educate the community about the importance of participating in trials and work with pharmaceutical companies to ensure trials are designed with patient perspectives in mind. Current clinical trial recruitment partners include Provention Bio, Kanyos Bio, and ImmunogenX. In addition, Beyond Celiac is working with 9 Meters Biopharma for the phase 3 study of larozotide acetate, the only celiac-related drug to advance to phase 3 clinical trials.
“Beyond Celiac will also invest significant resources to identify treatments that have been investigated or approved for other purposes but might also benefit celiac disease patients,” adds Bast. “This drug repurposing reduces risk, cost and time to market for potential celiac disease treatments.”
Assumption that the gluten-free diet is enough.
Currently, the only treatment for celiac disease is the gluten-free diet. However, 20% of children on the gluten-free diet are not healing, adults adhering to the gluten-free diet still show indications of long-term health damage and 44% of people with celiac disease self-report that they are “glutened” at least once per month.
“Celiac disease can lead to anemia, infertility, malnutrition, osteoporosis, and certain cancers, and it is associated with a higher risk of brain damage and mental health issues,” said Bast. “The gluten-free diet is just not effective in fighting these health risks, and our science team, scientific advisory board and professional staff are forging partnerships both here and abroad to determine the highest and best allocation of resources to drive new treatments.”
In addition to the leadership of Alesci as Chief Scientist and Strategy Officer, the Beyond Celiac science team includes Chief Scientific Investment Officer Ken Kilgore, PhD, MBA, Director of Research and Patient Engagement Kate Avery, MPH, and Director of Scientific Affairs Amy Ratner.
“Beyond Celiac has the right people in the right positions, and we are drawing together experts from across the celiac disease field and in other areas of autoimmune research to work together in fulfilling our mission to achieve treatments toward a cure by 2030,” adds Bast.
More information about the Beyond Celiac strategy to drive treatments toward a cure, including an infographic, a video and podcast interview, can be found at BeyondCeliac.org/scienceplan.
Celiac disease is a serious genetic autoimmune disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.