Patient Advocacy Organizations Continue to Develop Innovative Ways to Advocate for Patients
CSL Behring’s Local Empowerment for Advocacy Development Grant helps rare disease patient groups and patients protect access to lifesaving therapies.
KING OF PRUSSIA, Pa — 29 March 2017
Patients are the most compelling advocates for access to care, which is why CSL Behring awards Local Empowerment for Advocacy Development (LEAD) grants to support advocacy work of rare disease patient groups. These groups tackle complex legislative and public policy issues and ensure patients’ voices are heard on Capitol Hill and in statehouses across the U.S.
During the current funding cycle, the community-based grant was awarded to New England Hemophilia Association (NEHA), Neuropathy Action Foundation (NAF) , Bleeding Disorders Association of Northeastern New York (BDANENY), and Texas Central Hemophilia Association (TCHA).
NEHA, which covers Maine, Vermont, Massachusetts, New Hampshire, Connecticut, and Rhode Island, will use its LEAD grant to launch and grow the New England Bleeding Disorders Advocacy Coalition. Through this effort, which will include two people from each state serving as ambassadors, NEHA and the coalition will build an advocacy website, identify legislative issues, and explain the legislative process and calendar in each state.
NAF is using its LEAD grant to mobilize their nationwide grassroots network to address a number of continuity of care issues at the state level. These include relief for patients who are forced to pay maximum out-of-pocket expenses twice in one year due to a job change/loss or insurance change. NAF’s position is that when beneficiaries change plans involuntarily, they should not have to start from the beginning in terms of their out-of-pocket expenses.
BDANENY, working through the New York State Bleeding Disorders Coalition (NYSBDC), will create a teen advocacy/youth leadership program with its grant and kick off the program at a retreat ahead of the Coalition’s Legislative Day in March. The association aims to foster empowerment in advocacy development with teens by developing the Regional Education Advocacy Development for Youth (READY) program, with the goals of having teens become more aware of the impact they have in the community and cultivating the development of future leaders.
TCHA is funding advocacy communications outreach with its grant consisting of a printed newsletter, e-news publication, and leave-behind material for each legislative office including a summary of key issues impacting the bleeding disorders community. Their goal is to increase advocacy communication efforts that will assist in continuing to build upon existing relationships and generating of awareness with new legislators.
“Through our LEAD Grant program, we have awarded grants to a number of patient advocacy organizations totalling almost $1 million,” said Dennis Jackman, CSL Behring’s senior vice president for global healthcare policy and external affairs. “These grants help support patient empowerment and grassroots initiatives to inform and impact public policy decisions to ensure all patients have access to the therapies and services they need to remain healthy.”
The deadline for submitting proposals for the next LEAD Grant cycle is April 30, 2017. For more information visit LEAD Grant.
About CSL Behring
CSL Behring is a global biotherapeutics leader which is driven by its promise to serve 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 17,000 people, providing its life-saving, life-changing therapies to people in more than 60 countries. For more information visit www.cslbehring.com and follow us on www.Twitter.com/CSLBehring.