GAI Driving Results: Seven Years of Impact

Introduction

Since focusing its resources on the challenges of autoimmune diseases in 2015, the Global Autoimmune Institute has devoted leadership and financial support to an impressive array of initiatives and programs, several of which are groundbreaking in the medical community.

An essential partner in much of our work has been the Children’s National Hospital (CNH) in Washington, DC. This partnership grew out of our Executive Director’s work as a member of the Advisory Board of the Celiac Group. Together, we shared a drive to achieve several goals, including:

• to raise awareness in the medical community of many unrecognized symptoms
• to support and educate patients and their families living with celiac disease
• to improve diagnoses of co-existing autoimmune diseases and neurological disorders by promoting a multidisciplinary approach in medicine, and in particular in celiac disease, the one autoimmune disease with an identified cause.
• to promote an added focus on celiac disease and commonalities with other autoimmune diseases in science
• to improve diagnosis and treatment of celiac disease
• to hear and validate the experiences of those on their journey to obtain accurate diagnoses and treatment of their autoimmune diseases

As the Institute’s knowledge grew, it became clear that a broad scope of work was necessary to address the complex issues involved in autoimmune disease. This underpins our current focus on five key areas:

1. Expanding and strengthening the community of those affected by a range of autoimmune disorders in addition to celiac disease.
2. Developing and disseminating reliable, informative, and in-depth educational resources, shared widely at no cost.
3. Funding and promoting scientific research to further unravel the mysteries confounding successful diagnosis and treatment.
4. Promoting multidisciplinary approaches to diagnosis and treatment of autoimmune diseases and disorders, including neurological.
5. Informing and engaging future leaders in the public health field to improve the future of diagnosis, treatment, community services, and support for autoimmune disease patients and their families.

The Global Autoimmune Institute (GAI) believes that our leadership, work, and funding, had an outsized impact in causing changes in the field of celiac disease, and by extension, in autoimmune disease. We have been an essential part of the powerful new movement to improve the lives of those with autoimmune diseases including celiac disease. The way the community thinks about and understands symptoms treats patients, and researches connections to other autoimmune diseases are radically different from just six years ago. We are proud to share this summary of our work and a glimpse into GAI’s priorities for the next decade.

As the past decade unfolded, due to improved access to information and ease of communication via the internet, it became increasingly clear that celiac disease and many other autoimmune diseases were largely unknown to many physicians.

Misdiagnosis and lack of diagnosis was a critical problem, and reliable information on diagnosis, treatment, and coping with these diseases was largely unavailable. To make matters worse, patients and their families were reluctant to tell the whole story. They felt isolated, ashamed, discouraged, and desperate as they searched for help. One of GAI’s first priorities was to listen, connect, engage, and educate this community of patients, families, and physicians.

Connecting Resources to Those who Benefit Most

It was clear to GAI and CNMC, along with many others in the celiac disease and autoimmune disease community, that co-occurring disorders were under-recognized and diagnosed. Not only are they unlikely to be accurately diagnosed, but many celiacs never recover and their additional illnesses, autoimmune conditions, and neurological disorders go undetected.

In addition, patients who are diagnosed are not afforded critical support and necessary basic information in several areas necessary for their optimal health. First, they need to know if they have any other conditions, autoimmune diseases, and neurological disorders that exist in addition to their celiac disease that may not improve with diagnosis and adopting the necessary gluten-free diet. Second, they need guidance and education in managing their new gluten-free diet. Finally, they need emotional support to cope with their new challenges and to manage their past and present grief and anxiety.

The best solution to this pressing need was to bring multiple specialists together to meet with the patients and their families, to develop a coordinated system of care. In addition, it was important to develop a clinical research project to gather valuable information in the furtherance of the scientific study of celiac disease.

To achieve these goals, from 2017 through 2020 GAI granted CNMC $1.5 million to establish and operate a new Multidisciplinary Clinic for celiac disease patients. At this Clinic patients and their families are provided consultations with an experienced team including a Gastroenterologist, Neurologist, Dietician, Psychologist, and a celiac disease Educational Specialist. The model developed at the CNMC Multidisciplinary Clinic is now the gold standard, nationally and internationally, for celiac disease patients.

The Clinic has also undertaken selected research experiments. A clinical study on the neurological disorder headaches was conducted. Patient bio-samples have been collected and preserved for future study and one scientific investigation of T-cell behavior was attempted; however, this was deemed unsuccessful and was discontinued without findings.

On the advent of COVID-19, CNMC’s Celiac Clinic developed a comprehensive and well-received telemedicine operation. Originally contemplated and planned (pending changes in applicable laws and regulations) as a solution for underserved populations, such as those in rural areas in the far reaches of Maryland, the Clinic seamlessly adapted its coordinated system of care to the telemedicine format for all of its patients. This proved advantageous to the Clinic patients and their families, well beyond the importance of minimizing in-person contact due to the pandemic, and likely even improved the quality of care.

Additional funding for autoimmune disease research was awarded to investigators at Johns Hopkins Medicine, Baltimore, MD, Washington University School of Medicine, St. Louis, MO, and the City University of New York. The GAI website contains more details on each of these important studies and investigations. Funding research will continue to be a priority for GAI.

GAI is extremely proud of the progress and changes in which we have played a part in the autoimmune disease community at large. Millions of patients, each an individual on a unique journey, their families, and those who care about them, are in need of help and support. We will continue to increase our reach to assist more individuals, and help validate, encourage, care for and respond to their challenges and needs.

Our team has been inspired by the enthusiastic response to and widespread interest in our rapid response communications during the COVID-19 pandemic via our website and our social media outreach. GAI has created a uniquely comprehensive resource allowing anyone seeking answers to access the science-based information that becomes available at a dizzying pace. Our team will continue to recognize and respond to the most urgent needs in our community, as quickly as possible. A nimble organization by design, we will continue to adapt our approaches to the constantly shifting ways in which people communicate and choose to receive information.

During the past few years, GAI has seen great strides in the field of AD. Physician specialists are increasingly focusing on autoimmune disease and how it relates to the diseases they treat. Almost overnight many medical specialty conferences now include lectures, panel discussions, and workshops on how AD affects their patients. Much important scientific research is underway, bringing the scientific and medical communities closer to significant answers, making many important connections. Private industry is paying attention and university and industry collaboration continues to flourish. Two examples include laboratory testing companies that are investing in improved diagnostic tests for more autoimmune antibodies and pharmaceutical companies pursuing more effective deliverance of therapies at the molecular level.

COVID-19 has galvanized the research world in gathering data to track the functioning of the immune system following infection by the virus, focusing in particular on the now common long term heightened immune response currently known as “long Covid” which may lead to more widespread autoimmune disease in the world’s population. GAI is in process of compiling a list of organizations with long Covid registries, to post and encourage participation.

• Sponsoring a special Outlook Section on Autoimmune Disease, in Nature, a preeminent magazine for peer-reviewed scientific articles, published July 15, 2021, to promote awareness in the medical and scientific communities, as well as to the interested layman;
• Identifying and funding clinical and basic scientific research in cutting edge aspects of autoimmune disease;
• Developing additional educational events and materials independently and in partnership with institutions known for autoimmune disease expertise and leadership;
• Creating new and ongoing engagement campaigns on our social media platforms;
• Expanding our efforts to reach the broadest audience, to ensure maximum inclusivity, and to help bridge and improve existing socio-economic disparities;
• Collaborating with other organizations to develop consensus in important aspects of autoimmune disease;
• Developing unique, downloadable tools to assist individuals in their search for diagnoses and solutions, and to better understand and manage their conditions;
• Publishing a regular newsletter, distributed to an expanded mailing list; texting and emailing notices of important developments and information.
• Supporting and assisting other meritorious and dynamic organizations with related missions in autoimmune disease, and developing consensus, coordination, and efficiency with AD organizations and the AD community at large.

Despite the many discoveries that have been made, and the growing awareness of physicians of the presence and nature of autoimmune diseases, as well as some of their possible interrelationships, many forms of autoimmune disease remain difficult to diagnose, and effective treatment is often unavailable. AD symptoms are usually idiopathic; each person experiences variations in the extent and nature of their symptoms. Co-existences are poorly understood, with relatively few studies of only the most common AD’s having been completed. Existing study designs are very limited, and AD is extremely complex. In addition, we have a cultural norm of symptom dismissal or attribution to psychological illness in the absence of a diagnosis that can be made by laboratory testing. This has caused a great deal of harm to the many who are genuinely ill, trying to find help, and striving to cope.

Many of our best and brightest are devoting themselves to the field of AD, but it continues to grow in a piecemeal, fragmented manner because of its immense complexity and our limitations. New scientific knowledge is difficult to apply to the practice of medicine if it can be. In general, our dissemination of important information is not efficient. We are in a golden age of science, we have a physician community willing to learn, listen, and respond to the needs of their patients, and understanding of science is increasing in the general public.

We at GAI will continue to confront the complex problems of AD and provide the best and most comprehensive information for those seeking answers and validation. As the needs of our community evolve, GAI will remain active and committed to expanding our resources and the information we provide, as well as increasing our outreach through social media, networking, and educational events and programs.

GAI is hopeful that the aftermath of COVID-19 will bring to light more connections, within immunology and the community at large. These connections will create increased momentum in the discovery of the processes involved in autoimmune disease and validating and helping those who struggle to find the answers that will enable them to achieve better health. GAI will help propel the growth and delivery of expertise and education needed as we move forward into the future.