Navigation Links
Early Diagnosis and Treatment the Focus of International Dialogue on Primary Immunodeficiency Disease

KING OF PRUSSIA, Pa., April 20, 2011 /PRNewswire/ -- Thought leaders from the medical, scientific and patient advocacy communities gathered in New York and London for CSL Behring's Key Issues Dialogue–Immunoglobulin to examine challenges facing patients with primary immunodeficiencies. They found common ground between the US and Europe on access-to-care issues such as early diagnosis and treatment of primary immunodeficiency disease (PID) and explored possible ways of improving patient care.


The Think Zebra! campaign from the Immune Deficiency Foundation (IDF) put the challenge of early diagnosis in perspective. "In medical school, physicians are taught that when you hear hoof beats, think horses," Marcia Boyle, Dialogue participant and president and co-founder of IDF said.  "In other words, think of the most usual cause of the most usual diagnosis. Immunologists are taught when they hear hoof beats to think zebras. Look for the unusual."

The participants examined barriers to accessing immunoglobulin (Ig) therapy, which is available through subcutaneous and intravenous dosing, including challenges by some insurance plans that impede patient care. "Specialists cannot see a patient initially and then have the remaining care provided by a doctor closer to the patient's home and still be covered by insurance," said Dr. Richard A. Lewis, Professor and Associate Chairman of Neurology, Wayne State University School of Medicine.

Medicare and insurance companies sometimes determine the location of care based on criteria that do not consider the patient's best interests and that are not necessarily the most cost-effective option, according to Dr. John W. Sleasman, Robert A. Good Professor and Chief-Division of Allergy, Immunology and Rheumatology, Pediatrics Department, University of South Florida.  "The patient is required by Medicare to travel two hours by ambulance from his home to a hospital where he is administered intravenous Ig," Dr. Sleasman said about a patient in his seventies with common variable immunodeficiency. "It would be much more convenient and less costly to administer it in his home."

The problem has been further compounded by cuts to healthcare benefits. As a result, patients are experiencing longer intervals between Ig treatments and in some cases never get back to that point where they left off when they were getting infusions on a regular basis. "They [patients] go downhill, and they then end up with health changes that require treatment they didn't need before," Dr. Sleasman said.

Another challenge involves rigid guidelines for managing patients, particularly with respect to dosage. "You need guidelines but when they're too specific, insurance companies can really misuse them," Boyle said. Dr. Lewis added that in Europe, discussions about dosage restrictions are linked to the development of health technology assessments (HTA) which factor in dosage, efficacy and cost. "We have to be careful in the area of HTAs and provide data in a timely and effective way," Dr. Lewis said.

The participants agreed that Ig patients often have dramatically different needs in terms of dosing, formulation and methods of administration as they grow from infancy to adulthood. It is important for the makers of biotherapies used to treat PID to help manage patients' needs throughout their lifecycles, just as they manage the lifecycle of the products in their portfolio. Areas of common ground between the US and Europe were identified including a universal emphasis on sharing information to ensure that patients receive optimal care. Boyle said an IDF Internet survey found that patients who are connected to a patient organization receive better care than those that are not.

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, burn treatment and to prevent hemolytic diseases in newborns.

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

Chris Florentz
CSL Behring

Copyright©2010 PR Newswire.
All rights reserved

Related biology technology :

1. Chiltern Early Phase: Fully Integrated and Business Ready
2. Early-Bird Registration Ends this Week for 10th Annual Quality Excellence Conference: How Process Improvement Leaders Produce Profits in Recessions
3. The Lilly TB Drug Discovery Initiative Begins Work on New Compounds to Fill Early-Stage TB Drug Pipeline
4. Update: The Lilly TB Drug Discovery Initiative Begins Work on New Compounds to Fill Early-Stage TB Drug Pipeline
5. Early-Bird Pricing Ends Soon for MichBio Expo Attendees and Exhibitors; Award Nominations Due Nov. 1
6. BSP Signs Agreement With CMP Trading for Distribution of HyperQ(TM) Stress System, for Early Detection of Ischemic Heart Disease, in South Korea
7. RVX-208 Exploratory Study Illustrates Early Potential for Alzheimers Disease
8. MichBio Expo Draws Nearly 500 Professionals; Career Day Raises Profile
9. Cryoablation of Early Invasive Ductal Breast Cancer With MRI Confirmation Shows Promising Clinical Benefits, According to Study Presented at RSNA
10. SMU chemist wins NSF early career award
11. Carbon nanotube avalanche process nearly doubles current
Post Your Comments:
(Date:11/25/2015)... 2015 /PRNewswire/ - Aeterna Zentaris Inc. (NASDAQ:  AEZS; TSX: ... prospects remain fundamentally strong and highlights the following ... received DSMB recommendation to continue the ZoptEC Phase ... the final interim efficacy and safety data ... men with heavily pretreated castration- and Taxane-resistant prostate ...
(Date:11/24/2015)... , Nov. 24, 2015  Asia-Pacific (APAC) holds ... organisation (CRO) market. The trend of outsourcing to ... margins but higher volume share for the region ... scale, however, margins in the CRO industry will ... Market ( ), finds that the ...
(Date:11/24/2015)... ... November 24, 2015 , ... Copper is an essential ... bound to proteins, copper is also toxic to cells. With a $1.3 million ... (WPI) will conduct a systematic study of copper in the bacteria Pseudomonas aeruginosa ...
(Date:11/24/2015)... (PRWEB) , ... November 24, 2015 , ... This fall, ... at competitive events in five states to develop and pitch their BIG ideas to ... from each state are competing for votes to win the title of SAP's Teen ...
Breaking Biology Technology:
(Date:10/29/2015)... OXFORD, Connecticut , October 29, 2015 /PRNewswire/ ... "Company"), a biometric authentication company focused on the ... Wocket® smart wallet announces that StackCommerce, a leading ... will be featuring the Wocket® smart wallet on ... NXTD ) ("NXT-ID" or the "Company"), a ...
(Date:10/27/2015)... Oct. 27, 2015 Synaptics Inc. (NASDAQ: SYNA ... that Google has adopted the Synaptics ® ClearPad ... to power its newest flagship smartphones, the Nexus 5X ... --> --> Synaptics ... provide strategic collaboration in the joint development of next ...
(Date:10/23/2015)... Research and Markets ( ) has announced the ... 2015-2019" report to their offering. ... recognition biometrics market to grow at a CAGR of ... --> The report, Global Voice Recognition Biometrics ... market analysis with inputs from industry experts. The report ...
Breaking Biology News(10 mins):