Young People With Rare Medical Conditions
Faced With Care Issues and Possible
Healthcare Cuts Make Their Voices Heard
"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 — 03 October 2011
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
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
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
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
Manager Corporate Communications