KING OF PRUSSIA, PA – 01 August 2012 – CSL Behring announced today that it has awarded six patient advocacy organizations in the U.S. with Local Empowerment for Advocacy Development (LEAD) grants totaling nearly $70,000. LEAD grants are awarded semiannually and are intended to help local patient organizations achieve their advocacy objectives by further developing an existing initiative or developing a new one.
Carolinas Healthcare Foundation (CHF), Charlotte, NC
CHF will use its grant to create the IDEA program (Immune Deficiency, Education and Advocacy), a support group for children with primary immunodeficiency diseases (PIDD) in the Charlotte area. The LEAD grant will help expand IDEA’s ability to educate the local community by creating a support group website and newsletter, and by supporting ongoing patient advocacy meetings. The goal is to shrink the gap in delayed diagnosis through increased awareness, resulting in reduced time to see a specialist and lowering the likelihood of developing unwanted complications from PIDD.
“This grant will help update the community on group activities, showcase local events, and educate the greater Charlotte region about primary immunodeficiency-specific diseases and treatments,” said Niraj C. Patel, MD, MS, and Director of the Immunologic Clinic at Levine’s Children’s Hospital. “On a national level, the LEAD grant will support the development of a primary immunodeficiency advocacy group fundraising kit and brochures, and serve as a blueprint for others wanting to organize and sustain a local immunodeficiency support group.”
Neuropathy Action Foundation (NAF), Santa Ana, CA
NAF will use its grant to create a patient database with targeted grassroots/advocacy capabilities for addressing specialty tiers and coinsurance requirements being implemented by health insurance plans. The focus will be on state legislation with an emphasis on preventing the implementation of insurance drug tiers for specialty therapies at a high coinsurance rate. Alternatively, a cap of the patient out-of-pocket coinsurance would be implemented.
“Now, more than ever, strong, cohesive and organized patient advocacy is essential to protect accessible medications and treatments in today’s cost-driven environment,” said Dominick Spatafora, Executive Director of the NAF. “Without such advocacy, the debate will be focused on measures that are designed to provide short-term savings, at the expense of patient health and long-term costs.”
Bleeding Disorders Foundation of Washington (BDFW), Edmonds, WA
BDFW will use its grant to focus on specific advocacy initiatives such as striving to open up the state’s Medicaid sole provider program to include at least one other provider to increase options for patient care. They will also promote the comprehensive understanding of bleeding disorders for the state insurance exchange board to ensure that consideration of bleeding disorders is reflected in the exchange coverage benefits.
“We thank CSL Behring for their dedication to advocacy,” said Stephanie Simpson, Executive Director for BDFW. “This LEAD grant will empower our foundation to continue to fight for access to medications for all bleeding disorder patients.”
Western Pennsylvania Chapter of National Hemophilia Foundation (WPCNHF), Cranberry Township, PA
WPCNHF will use its grant to develop a grassroots, online advocacy tool as part of their website overhaul initiative. The website and the new tool will provide a greater level of empowerment for the individual constituents to engage with their legislators.
“We applaud CSL Behring’s commitment to advocacy in the bleeding disorders community,” said Jennifer Pegher, Executive Director for the WPCNHF. “CSL Behring’s support will allow our organization to further our advocacy goals through a stronger advocacy database and educational programming. We are anxious to engage our members and look forward to these individuals recognizing the importance of self-advocacy in order to achieve a stronger voice for all patients living with bleeding disorders.”
Grants were also provided earlier this year to the Bleeding Disorders Alliance of Illinois (BDAI) and the Bleeding Disorders Advocacy Network (BDAN). BDAI received the second installment of a two-part grant to develop a von Willebrand disease awareness program for school nurses in the Chicago area. BDAN was awarded a grant to conduct a series of legislative advocacy training workshops designed to build and strengthen the grassroots advocacy efforts of the bleeding disorders community within New York.
“CSL Behring recognizes the challenges these organizations face in generating funding for the many worthwhile projects they have to enhance condition awareness, consumer education and the capabilities to advocate for access to care,” said Dennis Jackman, Senior Vice President, Public Affairs, CSL Behring. “We are happy to learn of these initiatives, and help patient organizations effect positive change.”
Since its inception in 2008, CSL Behring’s LEAD program has awarded approximately 40 advocacy grants totaling more than $600,000.
LEAD Grant Application Deadline
LEAD grants are awarded semi-annually. CSL Behring considers grant proposals which relate to bleeding and platelet disorders, immune deficiencies, pulmonary disease, critical care and wound healing. The submission deadline for the next round of grants is October 31, 2012. Applications, specific criteria for applying and more information are available at LEAD Grant.
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 used around the world to treat 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, burn treatment and to prevent hemolytic diseases in 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 www.cslbehring.com or view CSL Limited’s Corporate Responsibility Report.
Manager, Corporate Communications