CSL Behring Awards Third Round of LEAD Grants Supporting Patient Organization Advocacy
Six grants totaling $100,000 awarded to patient organizations for grassroots advocacy
King of Prussia, PA — 28 July 2009
CSL Behring, a global leader in the plasma-protein biotherapies industry, has awarded six advocacy grants totaling $100,000 to patient organizations in the United States through the Local Empowerment for Advocacy Development (LEAD) program. LEAD grants support grassroots advocacy efforts by organizations that are committed to helping people who use plasma-derived and recombinant therapies to manage their health conditions. Since the LEAD program’s inception in 2008, CSL Behring has awarded more than $250,000 in three semi-annual grant cycles.
"CSL Behring is dedicated to advocacy and is honored to be able to collaborate with patient advocacy organizations to improve access to life-saving plasma-derived and recombinant therapies," said Dennis Jackman, CSL Behring Senior Vice President, Public Affairs. "CSL Behring is committed to helping organizations expand their advocacy initiatives and capabilities on both the state and federal levels."
In this most recent round of awards, six patient organizations were selected to receive grants. A total of 19 submissions were received. LEAD grants were awarded to:
- Chronic Obstructive Pulmonary Disease (COPD) Foundation
- Hemophilia Foundation of Illinois
- Hemophilia of North Carolina
- The Myositis Association
- The Neuropathy Association
- Respiratory Health Association of Metropolitan Chicago
The COPD Foundation will use its grant to develop a "435 program" -- a program designed to identify a grassroots advocate for every congressional district in the country. Chronic obstructive pulmonary disease (COPD) is a group of long-term, irreversible diseases that make it difficult to breathe because air does not flow easily out of the lungs. Some of the diseases generally associated with COPD are chronic bronchitis, asthma, and emphysema. Alpha-1 deficiency is a genetic, or inherited, form of COPD that is often misdiagnosed as asthma or another form of COPD because the symptoms are so similar—shortness of breath, chronic cough, difficulty breathing, and wheezing. It is estimated that 12 million people in the United States have COPD, of which nearly 100,000 of them have undiagnosed or untreated Alpha-1 deficiency.
John Walsh, President and Chief Executive Officer, thanked CSL Behring for the LEAD grant and said, "This grant will support the COPD Foundation’s grassroots advocacy platform, Operation 435, which carries several public policy and awareness initiatives to inform, educate, empower and engage individuals with COPD, family members and caregivers, health care professionals and lawmakers to address the issues and concerns of those living with COPD."
Respiratory Health Association of Metropolitan Chicago, which promotes healthy lungs and fights lung disease through research, advocacy, and education, will use their funding for advocacy and education. They will advocate for legislation mandating that the Illinois Department of Health assign a staff member exclusively to COPD/Alpha-1 antitrypsin deficiency. They will also advocate for the creation of a $250,000 line item in the Illinois state budget to develop a statewide education, awareness and surveillance plan for COPD/Alpha-1 antitrypsin deficiency.
In addition to funding organizations that assist people with pulmonary disorders, CSL Behring also provides funding to organizations that support patients with coagulation disorders.
The Hemophilia Foundation of Illinois, a state chapter of the National Hemophilia Foundation (NHF) dedicated to the treatment of all bleeding and clotting disorders, will use its grant to fund advocacy efforts depleted by a $700,000 reduction in the state hemophilia program. The Foundation also plans to create a public health program guide for Illinois residents with bleeding disorders.
Hemophilia of North Carolina, the North Carolina chapter of the NHF, will use its funding to reinstate the hemophilia line-item in the state budget. This program provides dental care, insurance co-payment assistance and the purchase of MedAlerts bracelets to patients being treated at North Carolina Hemophilia Treatment Centers.
Susan Cowell, Executive Director, Hemophilia of North Carolina, thanked CSL Behring "...for confidence in Hemophilia of North Carolina’s efforts to advocate for and empower our members. It was a real pleasure to have CSL Behring assist us in setting the advocacy ground work for some important initiatives we will be addressing this year, including reinstating funding for the Hemophilia Assistance Plan and raising or eliminating the annual cap for specialty drugs in the High Risk Pool. We know there is a lot of work to be done, and we look forward to working together to achieve our goals."
CSL Behring LEAD grants also support organizations dedicated to helping people with immune deficiencies and other rare conditions, such as the Myositis and Neuropathy Associations.
The Myositis Association (TMA) provides assistance to people with idiopathic inflammatory myopathies – an auto-immune disorder of unknown origin resulting in muscle swelling. TMA will use their LEAD grant to develop communications tools, including an online newsletter, to help the organization communicate rapidly with its constituents about important advocacy issues, such as improving access to intravenous immunoglobulin (IVIg) therapies.
Recognizing CSL Behring for the LEAD grant, Bob Goldberg, Executive Director, TMA said, "Advocacy is an increasingly important focus for The Myositis Association. We need to communicate with our grassroots constituents, mobilize them around issues that affect their lives and ensure that their voices are heard. The LEAD grant from CSL Behring will be instrumental in this effort and is greatly appreciated."
the Neuropathy Association will use their LEAD grant to purchase Convio advocacy software to develop grassroots advocacy capability on important legislative and advocacy issues. The Neuropathy Association is dedicated to helping and healing people with peripheral neuropathy, a disorder of the peripheral nerves—the motor, sensory and autonomic nerves that connect the spinal cord to muscles, skin and internal organs. This disorder usually affects the hands and feet, causing weakness, numbness, tingling and pain. .
LEAD grants are awarded semi-annually. The fourth round of grants will occur in October 2009. Applications, specific criteria for applying and more information about the LEAD program are available on the CSL Behring Web site at
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 manufacturers 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 and inherited respiratory disease. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in newborns.
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