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Early Diagnosis and Treatment the Focus of International Dialogue on Primary Immunodeficiency Disease
Date:4/20/2011

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 n
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SOURCE CSL Behring
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