Playing a Role in Research: Celiac Disease Drug Development & the Drug Information Association
Last month I had the honor of participating in the Drug Information Association’s (DIA) 49th Annual Meeting as a 2013 DIA Patient Advocate Fellow.
Because the gluten-free diet is currently the only treatment for celiac disease, some of you may be curious as to why I was interested in attending a meeting focused on the pharmaceutical industry and regulatory sciences.
Today we know that the gluten-free diet isn’t perfect – cross-contamination, isolation, constant fear of being gluten-ed, worry about finding a safe meal when dining out or traveling, the list could go on.
But these truths have not always been recognized or established.
Celiac disease was once considered a rare childhood condition that could be wholly treated by eliminating dietary gluten and these misconceptions significantly hindered research into pharmaceutical therapies for decades.
As one of the most commonly occurring lifelong genetically-determined diseases with an increased risk of health complications such as bone disease, infertility and intestinal and bowel cancers if left untreated, it is critical that celiac disease be recognized as a chronic condition worthy of the pharmaceutical industry’s attention.
Although a pharmaceutical treatment is absent from today’s market, it is exciting to have three treatments currently undergoing clinical trials in the US, each offering the patient population a unique solution for their celiac disease.
As these trials, and hopefully one day others, progress, it is essential that celiac disease patient advocacy organizations know how to navigate the pharmaceutical industry and the regulatory science field. An alternative treatment for celiac disease is no longer a hope but a reality and patients must learn about their important role in scientific research, how drugs are discovered and developed, and how clinical trials are conducted. In this case, knowledge is truly power.
A sincere thanks to Donna Mayer, the DIA Board of Directors, the 2013 Fellows, DIA Fellow Alumni, and the many professionals involved in the selection process and planning of this year’s meeting. It was a transformative experience and an incredible learning opportunity and I look forward to applying my new found knowledge to my work as a health communications professional.
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Stay on top of the latest news in the world of celiac disease drug development and clinical trials by visiting NFCA’s new web section on these very topics.
Entry filed under: Kristin. Tags: alternative treatments, celiac disease, clinical trials, cross-contamination, DIA, drug development, gluten-free diet, NFCA in the wild, pharmaceuticals, potential medications, Programs, research, treatment, vaccine.