CSL Behring's Grassroots Advocacy Grants Promote Early Diagnosis and Access to Care for Patients with Rare Diseases
CSL Behring has awarded 45 LEAD grants totaling more than $600,000 to patient advocacy organizations since the program was established in 2008.
King of Prussia, PA — 30 January 2013
CSL Behring announced today that it has awarded $78,750 in Local Empowerment for Advocacy Development (LEAD) grants to patient advocacy organizations in New York and Ohio, and to the American Plasma Users Coalition (APLUS). LEAD grants are intended to help local patient organizations achieve their advocacy objectives by further developing an existing initiative or creating a new one.
American Plasma Users Coalition
American Plasma Users Coalition (APLUS) is an umbrella group of patient advocacy organizations representing individuals reliant on plasma therapies. The coalition includes the National Hemophilia Foundation (New York, NY), Alpha 1 Association (Miami, FL), Alpha 1 Foundation (Miami, FL), Guillain‐Barré Syndrome/Chronic Inflammatory Demyelinating Polyneuropathy Foundation International (Narberth, PA), Committee of Ten Thousand (Washington, DC), Hemophilia Federation of America (Washington, DC), Jeffrey Modell Foundation (New York, NY), Platelet Disorder Support Association (Rockville, MD) and Patient Services Incorporated (Midlothian, VA).
The LEAD grant will provide second-year funding for the APLUS state insurance exchange project. The project is designed to educate state advocates for all APLUS members on the development of state insurance exchanges and related insurance reforms stemming from the Affordable Care Act. The project will assist and educate state advocates about engaging in the process and rollout of a state health insurance exchange, as well as impacting the design of essential health benefits for those state exchanges.
Larry LaMotte, Vice President of Public Policy at the Immune Deficiency Foundation, had this to say about the LEAD grant to APLUS. “We are so pleased that CSL Behring is continuing to enable the members of the coalition to educate our patients about how to navigate issues surrounding the health care reforms of the Affordable Care Act. This will allow our patients to be better consumers and our member organizations to be better advocates for patients with rare and chronic diseases who use plasma protein products.”
Hemophilia Association of New York
The Hemophilia Association of New York (HANY) will use its LEAD grant to support the ongoing effort to pass legislation extending the State’s Child Health Plus Insurance (CHiP) coverage for blood clotting factor to the outpatient setting. Currently, the CHiP program in New York only covers clotting factor administered in an inpatient setting, which can be a barrier to patient access. Last year the State Assembly passed legislation allowing for coverage in the outpatient setting, but the bill did not make it through the Senate before the end of the legislative session.
HANY Executive Director Linda Mugford said the Association, which is a member of the New York State Bleeding Disorders Coalition, is very pleased that CSL Behring awarded this LEAD grant to aid the organization in its statewide advocacy efforts. “Our focus this year will be on the current CHiP legislation introduced in the Senate during the last legislative session. The CHiP program currently does not cover out-patient factor for enrollees. This has caused many families who are eligible for the program to not utilize it, and can lead to financial hardship and difficulty in accessing factor.”
New York City Hemophilia Chapter
The New York City Hemophilia Chapter (NYCHC) of the National Hemophilia Federation plans to use its LEAD grant to develop a von Willebrand disease awareness program for school nurses in collaboration with the New York City Board of Education. This program is based on a pilot that CSL Behring currently supports in the Los Angeles public schools. The 126 school-based health centers in New York City often serve as the first line of healthcare for children. Educating school nurses about von Willebrand disease is important, especially for teenage girls in whom the disease can be overlooked. In cases of teenage menorrhagia, school nurses may serve as the first line of referral to a hemophilia treatment center.
NYCHC Executive Director Glenn Mones said, “We're gratified to have received this LEAD grant which will allow us, working with the Hemophilia Association of New York, to reach out to school nurses in New York City with important information about bleeding disorders. We applaud CSL Behring for helping provide chapters and associations with critical funds to advocate for the needs of the community."
The Neuropathy Association (New York, NY) will use its LEAD grant to extend the Convio advocacy module, an online constituent engagement solution, for their website for 2013. This is part of a larger effort to make the Association website more interactive, allowing their constituents to take a greater role in public policy and advocacy. The tool will allow the Association to enhance their grassroots capabilities on important public policy issues that impact those with neuropathies.
Ohio Bleeding Disorders Council
The Ohio Bleeding Disorders Council (OBDC) is an umbrella organization that represents five Ohio-based patient advocacy organizations for bleeding disorders. They are the Southwestern Ohio Hemophilia Foundation (Moraine), Northern Ohio Hemophilia Foundation (Independence), Central Ohio Chapter of NHF (Columbus), Northwest Ohio Bleeding Disorders Foundation (Toledo) and TriState Bleeding Disorders Foundation (Cincinnati).
The OBDC members will use the LEAD grant to conduct their annual legislative advocacy day. The focus this year is on maintaining the budget line items for both the Bureau of Children with Medical Handicaps under the Ohio Department of Health, and the Adult Hemophilia Insurance Premium Program. In addition, the OBDC will work with the State Medicaid Department to ensure that any transition of children with bleeding disorders into Medicaid Managed care is done smoothly.
“Today’s ever-changing health care landscape is demanding that the bleeding disorder community engage in advocacy in ways that it hasn't seen in years,” said Randi Clites of OBDC. “The Ohio Bleeding Disorder Council is stepping up its advocacy strategies in the coming year, and it appreciates the generosity and support from CSL Behring through its Local Empowerment for Advocacy Development grant.”
CSL Behring’s Senior Vice President, Public Affairs Dennis Jackman said the difficult economy has impacted patient advocacy groups and put pressure on patient access to critical therapies. “We recognize the challenges these organizations face in generating funding for the many worthwhile projects they conduct to raise awareness of rare and serious medical disorders, and to advocate for access to care,” Jackman said. “CSL Behring remains committed to helping patient groups affect positive change for people with rare diseases regardless of the economic climate.”
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 April 30, 2013. Applications, specific criteria for applying and more information are available on the
LEAD Grants page at
About CSL BehringCSL 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, and neurological disorders in certain markets. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in the newborn. For more information, visit
www.cslbehring.com. CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma.
Manager, Corporate Communications