In June, CSL Behring announced the recipients of its Local Empowerment for Advocacy Development (LEAD) awards, which provide grants to support grassroots advocacy efforts by organizations committed to helping people with rare diseases who use plasma-derived and recombinant therapies to manage their health conditions. Among the seven awardees in this first round are four chapters of the National Hemophilia Foundation and the Hemophilia Council of California: Hemophilia of Indiana, Inc., Hemophilia Foundation of Hawaii, Gateway Hemophilia Association (St. Louis, MO) and the Lone Star Chapter of NHF (Houston, TX). Also receiving LEAD grants were the Immune Deficiency Foundation and Alpha-1 Foundation.
The Gateway Hemophilia Association, the Lone Star Chapter of NHF and the Hemophilia Council of California plan to use the grant money to advance statewide standards of care or standards of service legislation. Hemophilia of Indiana, Inc., is advocating a Medicaid policy change that will extend coverage to hospitals to defray the costs associated with administering blood-clotting factors in hospital inpatient settings. The Hemophilia Foundation of Hawaii is using its LEAD grant to seek renewal of state legislation to help people who need insurance co-payment support.
This round of LEAD grants total more than $90,000. CSL Behring will be awarding these grants on a semi-annual basis. The second round of LEAD grants will occur in October. CSL is the second pharmaceutical company to fund grassroots advocacy. The first was Baxter Healthcare Corporation, whose Partnership for Advocacy and Communications Training (PACT) grant program began providing financial support to organizations conducting grassroots state advocacy on behalf of the bleeding disorders community in 2005.
Information and applications for the second round LEAD grants are on CSL’s Web site.
Source: CSL Behring press release dated June 25, 2008