Navigating the complexities of the Affordable Healthcare Act (ACA) can be challenging, particularly where patients with chronic medical disorders such as hemophilia and von Willebrand disease are concerned. CSL Behring is awarding a Local Empowerment for Advocacy Development (LEAD) grant to help bleeding disorder patients develop a clearer understanding of ACA and potential areas of concern.
The grant will enable Hemophilia of Indiana to help close the information gap by providing training for National Hemophilia Foundation (NHF) chapter staff and hemophilia treatment center (HTC) social workers in five states – Indiana, Michigan, Wisconsin, Illinois and Missouri. The training will address the following areas:
- Issues related to the implementation of the ACA as they pertain to people with bleeding disorders.
- How to assist those with specific chronic health conditions and help to ensure their needs are fully met under the ACA’s 10 “essential health benefits.”
- How to examine whether a person’s insurance coverage, particularly coverage provided through new exchanges, provides a sufficient array of providers (including HTCs) and defined standards that meet those that patients had obtained prior to the passage of ACA.
After completing the training, it is expected that HTC and NHF staff will have greater understanding of specific issues around ACA implementation that impact the quality of healthcare insurance coverage of people with bleeding disorders. Staff will also be better equipped to monitor ACA implementation to identify areas of specific concern for people with bleeding disorders.
In addition, HTC social workers will be more knowledgeable about the ACA and will be able to answer consumers’ questions in an accurate and timely manner. Lastly, the participants will be trained to develop action steps and an advocacy plan for consumers to guide their efforts to secure desired insurance coverage, particularly with regard to plans that provide the best coverage for clotting factor. The training will be held in August in Indianapolis.
Dennis Jackman, CSL Behring’s senior vice president for global healthcare policy and external affairs, said selecting the best coverage for clotting factor can be particularly challenging. “The implementation of ACA could pose a substantial shift in how people are insured. Individuals in the states will have many different plans, some that are part of a state exchange, others that are part of a federal exchange, and still more plans that are a combination of the two, depending on the state. Our goal is to help assure that patients and their caregivers have as much information as possible to assist them in making decisions that are in their best interests.”
Scott Ehnes, executive director of Hemophilia of Indiana, said the grant from CSL Behring is essential to the success of the project. “As the details of this complex healthcare insurance reform initiative become clear, the LEAD grant will enable us to conduct training that addresses areas of concern that are identified as the ACA is implemented, such as issues around the healthcare exchanges.”
CSL Behring also awarded a LEAD grant to facilitate the formation of the Texas Bleeding Disorders Coalition, comprised of three existing patient groups: Texas Central Hemophilia Association, the Lone Star Chapter of NHF, and the El Paso Chapter of NHF. Jackman emphasized the importance of speaking with one voice on behalf of bleeding disorder patients in Texas. “We are happy to support this effort, which will hopefully enable them to expand on their already successful advocacy efforts.”
A third LEAD grant is being awarded to the Louisiana Hemophilia Foundation to establish a dynamic advocacy program that enables the members of Louisiana’s bleeding disorders community to take a more active role in advocating for access to care.
CSL Behring has awarded 51 LEAD grants to patient advocacy organizations totaling more than $630,000 since the program was established in 2008. Proposals are being accepted for the next grant cycle. The deadline for submitting a proposal is April 30, 2014.
About CSL Behring
CSL 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.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a global biopharmaceutical company and a member of the CSL Group of companies. The parent company, CSL Limited (ASX:CSL), is headquartered in Melbourne, Australia. For more information, visit http://www.cslbehring.com/.
Chris Florentz, CSL Behring