Americans With Rare Diseases Are Experiencing
Diminished Access To Health Care
Patient advocacy, medical and insurance industry thought leaders examined barriers to access to care and possible solutions in CSL Behring’s just released Key Issues Dialogue
King of Prussia, PA — 20 October 2011
CSL Behring announces publication of its Key Issues Dialogue on “Access to Care” which addresses many of the practices that impede access to care for people with rare and serious medical disorders, and possible solutions. This discussion is especially relevant now as healthcare reform is being implemented to assure that people with rare diseases do not end up with reduced care as an unintended consequence.
The Dialogue is the most recent in the ongoing series that analyzes critical issues of importance to patients who use human plasma-derived and recombinant coagulation factor therapies and to caregivers and healthcare providers.
Provocative issues examined
The participants engaged in a frank and open exchange about current access to care issues that make it difficult for some people with serious and rare medical conditions to obtain life-saving therapies. They addressed a wide range of important issues including evidence-based medicine, cost versus coverage decisions, step therapy, defensive medicine and tort reform, consumers’ responsibility to question necessity and cost, and the vulnerability of people with rare diseases to cost shifting through co-pays.
Excerpted remarks by the participants
Physicians are practicing defensive medicine. Implementing tort reform in this country with limits on liability will have a significant impact on reducing the cost of health care.
– Mark Ballow, M.D., Children’s Hospital of Buffalo
Specialty tiers…are one of the most discriminatory practices. It punishes people with rare and serious diseases...
– Dominick Spatafora, President, Neuropathy Action Foundation
We need to focus on effective research procedures, diagnostics and the various strategies for taking care of diseases. It isn’t always easy to determine exactly the
right treatment for a patient.
– Edmund Pezalla, M.D., M.P.H, National Medical Director, Aetna
Too often a treatment protocol is based on outdated or misinterpreted insurance coverage criteria instead of what is best for the patient.
– Marcia Boyle, President, Immune Deficiency Foundation
Key Issues Dialogue – “Access to Care” can be viewed in its entirety at
CSL Behring Expert Dialogue Series.
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 indicated for the treatment of coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies, hereditary angioedema and inherited respiratory disease. The company’s products are also used in cardiac surgery, organ transplantation, immune thrombocytopenic purpura, burn treatment and to prevent hemolytic disease of the newborn.
CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of
CSL Limited (ASX:CSL), a biopharmaceutical company headquartered in Melbourne, Australia. For more information, visit
Manager Corporate Communications