FEATURE STORIES
UAB Joins Global Sarcoidosis Alliance by Andy Currie
WINTER 2023
The University of Alabama at Birmingham ? s Multidisciplinary Sarcoidosis Clinic has joined the Foundation for Sarcoidosis Research ( FSR ) as a founding member in their Global Sarcoidosis Alliance ( GSA ). This new network of specialty clinics in the United States and globally creates a robust network for patient and clinician education , innovates sharing of information to advance new therapies for treatment of sarcoidosis , and creates collaborative referral networks to connect patients with complex sarcoidosis with specialists familiar with their disease . Sarcoidosis is an inflammatory disease characterized by the formation of granulomas in one or more organs of the body .
When left unchecked , chronic inflammation caused by granulomas can lead to fibrosis . This disorder affects the lungs in approximately 90 % of cases , but it can affect almost any organ in the body . Despite increasing advances in research , sarcoidosis remains difficult to diagnose with limited treatment options and no known cure .
Disease presentation and severity varies widely among patients . In some cases , the disease goes away on its own . In others , the disease may not progress clinically but individuals will still suffer from some symptoms that challenge their quality of life . The rest of patients ? up to a third of people diagnosed with the disease ? will require long-term treatment . It ? s estimated that the prevalence of sarcoidosis in the US ranges between 150,000 and 200,000 ( Baughman , RP et al ), with an estimated 1.2 million individuals with sarcoidosis worldwide ( Denning , DW et al .). The FSR Global Sarcoidosis Clinic Alliance brings together sarcoidosis clinics and hospitals committed to finding a cure and offering evidence-based , patient-centric care for those living with sarcoidosis . Alliance members will benefit from innovative resources , sustainable programming , and tools to accelerate treatment , research and the continuum of patient care .
In Alabama , the rate of lung cancer cases is significantly higher than the national rate . Southern veterans often come into the program ? s clinic with unique environmental and occupational exposures . The Lung Cancer Screening ( LCS ) Program aims to improve lung cancer screening among Veterans , whose cancer often goes undetected until later stages , in an effort to connect them to clinical trials . Early discovery is essential , as it can increase a patient ? s five-year survival rate to nearly 80 %.
In 2021 , Dr . Devika Das , BVAMC Section Chief Hematology / Oncology , and Dr . Mark Dransfield , Director of
PULMONARY , ALLERGY , AND CRITICAL CARE MEDICINE
? FSR believes in the power of many to join forces for true game-changing results in sarcoidosis care and research . The FSR Global Sarcoidosis Clinic Alliance will ensure every patient in UAB Sarcoidosis Clinic Team every community
Photography : Carolyn Walsh
across the world has access to education , care , and support , leading to improved patient outcomes ,? says Mary McGowan , FSR CEO . ? The quality of life of approximately 1.2 million sarcoidosis patients impacted by sarcoidosis world-wide depends on a true global collaborative and that ? s exactly what this Alliance is all about .? ? We are excited to contribute to this new alliance and push the margin forward in understanding and eventually curing sarcoidosis for thousands of patients in Alabama and worldwide ,? said Joseph Barney , M . D ., professor in the UAB Division of Pulmonary , Allergy and Critical Care Medicine and director of UAB ? s Multidisciplinary Sarcoidosis Clinic .
? We were initially motivated to join the alliance to foster collaboration between other providers from other clinics in the United States ,? said Pilar Acosta Lara , M . D ., a member of the UAB Multidisciplinary Sarcoidosis Clinic .
? Since joining the alliance , we have been fostering working collaborations with other clinics in the US ,? Dr . Acosta Lara said . ? Our patients share the same barriers as those in other alliance clinics - access to care , support care network geared towards patients , and access to clinical trials . This alliance will expand all of our efforts to improve the care of sarcoid patients ?
the UAB Division of Pulmonary , Allergy , and Critical Care , received a $ 1.3 million grant to develop a Lung Precision Oncology Program at the Birmingham VA Health Care System . The LCS program is now being piloted at the Birmingham VA Women ' s Clinic and will slowly expand to other BVAHCS Clinics
? This is team science at its best ,? Dr . Das says . ? Everyday , we learn something .? This program is centered around a structured , nurse-driven lung cancer screening , offered not only in Birmingham , but in nearby Tuscaloosa .