KING OF PRUSSIA, Pa. – April 26, 2018 – Patient advocacy groups in Michigan, Washington, Illinois, Missouri and South Carolina are preparing to meet the many challenges standing between patients with rare bleeding disorders and access to care. Their efforts are being supported in part by Local Empowerment for Advocacy Development (LEAD) grants from global biotherapeutics leader CSL Behring.
Susan Fenters Lerch, executive director of the Hemophilia Foundation of Michigan (HFM), said her organization is using its LEAD grant to help counter what she describes as “burgeoning threats to health care.” HFM’s strategy is to increase youth involvement, education and leadership in state-level advocacy to protect and enhance access to care.
"Advocacy is a necessary part of life for all members of the bleeding disorders community,” Lerch said. "In the words of one of our teen advocates, ‘a bleeding disorder is part of my identity, and advocacy comes along with that.'”
In Washington State, people with hemophilia, von Willebrand disease and other rare bleeding disorders are dealing with increasingly complex public policies involving Medicaid, co-pays, out-of-pocket expenses and changes to the Affordable Care Act. The Bleeding Disorders Foundation of Washington (BDFW) is responding to these challenges by creating Advocacy 102 Summit Training for patients with its LEAD Grant.
BDFW is training up to 40 advocates to educate elected officials regarding health care issues. The foundation also hopes to place an advocate or advocates in a position to work on the pending federal effort to evolve the framework of the Washington State Bleeding Disorder Collaborative into a federal demonstration project.
In Illinois, the Bleeding Disorders Alliance of Illinois (BDAI) supports nearly 3,000 patients affected by inherited bleeding disorders such as hemophilia and von Willebrand disease. With help from the LEAD grant program, BDAI is putting together an advocacy campaign designed to meet the current and future advocacy needs of the bleeding disorders community in the state.
The Gateway Hemophilia Foundation (GHF) in Missouri had previously developed a state-wide Advocacy Ambassador program that prepares patient-volunteers to serve as liaisons between GHF and elected officials, and to share their personal stories with decision makers. Now, with the help of a LEAD grant, GHF is building on its Advocacy Ambassador program by providing advanced advocacy training to strengthen relationships and increase engagement with key local legislators.
Hemophilia of South Carolina (HSC) is tackling several major challenges. These involve establishing a standard of care for hemophilia and bleeding disorder patients in South Carolina, including access to Hemophilia Treatment Centers and Factor therapies as well as expanding its Advocacy Ambassador program. HSC’s Advocacy Ambassadors are volunteers who help to establish and build a strong grassroots network of bleeding disorder advocates throughout the state, creating greater awareness of the needs of patients.
HSC is also working to address continuity of care, primarily through better access to HTCs in South Carolina and to better secure access to healthcare and treatment for hemophilia patients through legislation or regulatory reforms.
“CSL Behring is committed to supporting the important work of these organizations, which play a vital role in expanding patient access to information and healthcare,” said Dennis Jackman, CSL Behring’s Senior Vice President for Global Healthcare Policy and External Affairs.
“This is all the more important during a time of uncertainty around access to care for patients generally, and for those with rare and chronic medical disorders in particular,” Jackman added. “We are driven by our promise to strive to ensure all patients have access to the medicines and services they need.”
CSL Behring has awarded over $1 million in LEAD Grants since the program was established 10 years ago. The deadline for submitting proposals for the next LEAD Grant cycle is April 30, 2018. For more information visit LEAD Grant.
About CSL Behring
CSL Behring is a global biotherapeutics leader 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; USOTC:CSLLY), headquartered in Melbourne, Australia, employs nearly 20,000 people, and delivers its life-saving therapies to people in more than 60 countries. For more information visit www.cslbehring.com and follow us on www.Twitter.com/CSLBehring.
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