Young People With Rare Medical Conditions Faced With Care Issues and Possible Healthcare Cuts Make Their Voices Heard

Oct 03, 2011, 08:00 ET from CSL Behring

"Raise Your Voice!" teaches them to be their own best advocate, particularly in tough budget times when legislation and policy decisions could affect their access to care.

KING OF PRUSSIA, Pa., Oct. 3, 2011 /PRNewswire-USNewswire/ -- Young people between the ages of 15 and 22 converged on Washington, D.C. this summer, eager to tell elected officials their personal stories. The stories are as varied as the towns and cities from where they hail, places like San Antonio, Pittsburgh, Des Moines and New York.

Even though most of them were meeting each other for the first time, the participants in CSL Behring's Raise Your Voice! (RYV!) youth empowerment program shared camaraderie and a bond that transcended geography, socioeconomics and ethnicity. The bond is called primary immunodeficiency diseases (PIDD). They are serious conditions that many of them suffered with for years before being diagnosed. Now they face the possibility of healthcare cuts that could affect their access to life-enhancing and in some cases life-saving therapy.

The Immune Deficiency Foundation (IDF) hosted RYV! in conjunction with its Advocacy Day event with a Local Empowerment for Advocacy Development (LEAD) grant and professional advocacy staff support from CSL Behring. RYV! helps patient groups train young people with rare and serious conditions such as PIDD, hemophilia, von Willebrand disease, hereditary angioedema and inherited respiratory disease to apply their unique insights to public policy discussions with their representatives.

At the heart of RYV! is the message that people with rare diseases can never take access to care for granted. It is essential for them to take an active role in safeguarding their access to the therapies and treatment they need by participating in grassroots advocacy.

"The Immune Deficiency Foundation supports advocacy to promote healthcare legislation and policies that positively affect the primary immune deficiency community," says Larry La Motte, Director of Public Policy at IDF.  "Raise Your Voice! is a wonderful way to involve our younger patients and motivate them to learn about the fundamentals of public policy and about being their own advocates."

Before visiting Capitol Hill, the participants were trained in the key issues that face them as patients with PIDD including the health care reform law and what it means for them, and the Medicare IVIg Access Act (HR 1845/S 960), a bill that will significantly affect patients with PIDD which IDF has made a legislative priority. They also worked on how to effectively present their stories to representatives and their staffers to maximize their time.

"We emphasize the importance of telling their legislators who they are and why they're there to meet with them," says Dennis Jackman, CSL Behring's senior vice president, public affairs.  "Their personal stories differentiate them from others who go to the Hill to have their voices heard. Describing how PIDD has affected their lives underscores the urgency for action. CSL Behring is dedicated to advocating for patient access to care and helping empower individuals with rare and serious conditions."  

The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. Along with advocacy efforts, IDF provides educational programs and materials that offer medical information, guidance about health insurance issues, important life management and patient care resources, and support for patients and family members.  


About CSL Behring

CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufactures and markets a range of plasma-derived and recombinant therapies worldwide. CSL Behring therapies are indicated for the treatment of coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease. The company's products are also used in cardiac surgery, organ transplantation, immune thrombocytopenic purpura, burn treatment and to prevent hemolytic disease of the newborn.

CSL Behring operates one of the world's largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL Limited (ASX:CSL), a biopharmaceutical company headquartered in Melbourne, Australia. For more information, visit

Chris Florentz, Manager Corporate Communications, CSL Behring