Patient Groups Sharpen Their Capabilities to Protect Access to Medicines for Treating Rare Bleeding Disorders

CSL Behring's LEAD grant is helping them advocate more effectively in a shifting health care environment.

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Sep 28, 2017, 08:00 ET

KING OF PRUSSIA, Pa., Sept. 28, 2017 /PRNewswire/ -- The Great Lakes Hemophilia Foundation (GLHF) headquartered in Milwaukee, Wis., the New York City Hemophilia Chapter (NYCHC) and the Ohio Bleeding Disorders Council (OBDC) in Columbus take on complex legislative and public policy issues to ensure patients' voices are heard in their statehouses.

Recently they received an added resource in the effort to advocate for patients' rights in the form of CSL Behring's Local Empowerment for Advocacy Development (LEAD) grant. CSL Behring is a global biotherapeutics leader, which provides life-saving medicines to patients with rare and serious diseases in more than 60 countries.

During the funding cycle just ended, the community-based grant was awarded to the three groups to ensure patients have the tools they need to effectively advocate for necessary access to care.

GLHF is using its LEAD grant to re-energize its grassroots program and carry out its advocacy plan, which focuses on lobbying Wisconsin's legislature. The plan includes education and training of volunteers and elected officials, hosting state legislative days and building key relationships, enhancing communications to include social media training, website and email capabilities, and establishing a procedure for action alerts.

GLHF Executive Director Danielle Leitner Baxter said the grant will assist her organization in its mission to educate, support and advocate. "The funds we received will enable our chapter to more actively participate in the legislative process in Wisconsin," added Baxter.

OBDC is funding its key advocacy priority for 2017 – the Bleeding Disorders Advocacy Ambassadors (BDAA) program – with the LEAD grant. This includes identifying engaged advocates around the state as. OBDC plans a series of trainings for the ambassadors that focus on state policy issues and the goals of the BDAA program. In addition to developing and implementing the eight-month program, OBDC will also evaluate its effectiveness.

"The LEAD grant will allow us to improve patient and parent involvement in grassroots advocacy throughout Ohio," said OBDC's Advocacy Coordinator Randi Clites. "The BDAA program will develop patient voices in all aspects of patient advocacy from personal to federal advocacy initiatives. Our members need to know their rights and speak out on the issues that can impact their health and well-being."

NYCHC is using its LEAD grant to identify and train members of the bleeding disorders community as regional advocacy captains, who will strengthen relationships with key local legislators and increase engagement within their respective regions. The RACs will then work with NYCHC staff to identify and train local area families to become more engaged in the issues facing the bleeding disorders community, and communicate within their own spheres to broaden awareness of the issues.

The LEAD Grants provided for these patient groups will them help sharpen their advocacy capabilities in order to protect access to care for the bleeding disorder community in their respective regions.

"Our LEAD Grant program is now in its ninth year, and the need for patient empowerment and advocacy has never been greater," said Dennis Jackman, CSL Behring's Senior Vice President for Global Healthcare Policy and External Affairs. "We believe our role goes beyond developing, manufacturing and delivering lifesaving medicines. We have an obligation to inform and impact public policy decisions to ensure all patients have access to the medicines and services they need."

The deadline for submitting proposals for the next LEAD Grant cycle is October 31, 2017. For more information visit LEAD Grant.

About CSL Behring
CSL Behring is a global biotherapeutics leader, which is driven by its promise to save lives. Focused on serving patients' needs by using the latest technologies, we develop and deliver innovative therapies that are used to treat coagulation disorders, primary immune deficiencies, hereditary angioedema, inherited respiratory disease, and neurological disorders. The company's products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic disease of the newborn.

CSL Behring operates one of the world's largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX: CSL), headquartered in Melbourne, Australia, employs more than 16,000 people with operations in more than 30 countries. For more information visit www.cslbehring.com and follow us on www.Twitter.com/CSLBehring.

SOURCE CSL Behring