May designated as National GBS Awareness Month

PHILADELPHIA, May 1 /PRNewswire/ — A number of patients suffering from a rare and debilitating neurological disorder called Guillain-Barre Syndrome (GBS) do not receive proper medical care due to the lack of reimbursement for the medical attention and treatment needed, according to a first-ever major national survey of GBS patients. Results of the survey are presented in conjunction with National GBS Awareness Month, which kicks off May 1.

The survey reveals that GBS patients will forego proper medical attention or treatment, fearing they will not be reimbursed by insurance programs for the expense. Responding to this issue in the survey, more than 13 percent of the patients indicated they:

- Did not obtain prescriptions.
- Did not see a doctor when sick.
- Did not get prescribed tests.
- Stretched out prescriptions.
- Did not see a specialist when needed.
- Did not go to the hospital when needed.

“The average GBS patient endures and copes with unnecessary physical hardship on a daily basis,” said Estelle L. Benson, Executive Director of GBS/CIDP Foundation International. “Those patients who won’t see a doctor or refill a prescription because they can’t afford it, and know insurance won’t cover the costs, are placed in a terrible position.”

As a result of the patient survey, the Foundation has committed additional resources and efforts toward patients and their families, including research; strengthening advocacy programs in the areas of reimbursement, access to care, and legislative initiatives; and providing additional education for patients, caregivers and medical professionals.

GBS Survey

GBS/CIDP Foundation International is a non-profit organization dedicated to helping individuals and their families recognize and cope with neurological disorders. The survey was conducted in 2004 and 2005 by the Foundation, which lists 23,000 members worldwide, querying U.S. members.

Of the neurological disorders, the survey reveals that the incidence of GBS represented the vast majority of the patients with 82 percent of the 3,800 surveyed patients reporting signs and symptoms of GBS.

About GBS/CIDP

Guillain-Barre (Ghee-yan Bah-ray) Syndrome (GBS) is an inflammatory disorder of the peripheral nerves. It is characterized by the rapid onset of weakness. Symptoms often include paralysis of the legs, arms, breathing muscles and face.

GBS is the most common cause of rapidly acquired paralysis in the United States. Its cause is not known and no licensed treatment exists. It strikes thousands of patients each year, regardless of age, gender, geographic location or ethnic background. According to the Foundation, GBS affects 1.5 to 3.5 percent of every 100,000 people worldwide.

CIDP is a rare disorder of the peripheral nerves characterized by gradually increasing weakness of the legs. It can start at any age and in both genders. CIDP represented 14 percent of the 3,800 patients surveyed.

National GBS Awareness Month

The GBS/CIDP Foundation has designated May as National GBS Awareness Month to educate Americans about this rare debilitating disorder. Local chapters across the U.S. and around the world will conduct activities to raise awareness, including educational seminars and walk-a-thons led by friends and family members of GBS patients.

“This is a serious and alarming neurological condition,” said Benson, whose husband, Robert, suffered an attack of GBS in 1979. “GBS will strike without warning, often leaving patients paralyzed for a period of time. It’s important for people to be aware of this disorder in the event it occurs in their lives or to someone they know.”

GBS/CIDP Foundation International

The GBS/CIDP Foundation International is a non-profit organization founded by Robert and Estelle Benson. Since its inception in 1980, the grass roots effort has grown to become an international organization with 160 chapters on five continents.

The GBS/CIDP Foundation is committed to providing support and assistance to GBS patients and their families to increase knowledge and awareness of the disorders in both the public and professional communities. The Foundation provides print information and educational opportunities, sponsors worldwide meetings, lectures and support groups, hosts a bi-annual International Symposium and encourages new findings by awarding research grants for further study and experimentation. More information can be found at www.gbsfi.com or by calling (610) 667-0131.

The GBS/CIDP survey was supported by a grant from ZLB Behring.

About ZLB Behring

ZLB Behring is a global leader in the plasma protein bio-therapeutics industry. Dedicated to improving the quality of life for patients throughout the world, ZLB Behring provides safe and effective plasma-derived and recombinant products and offers patients a wide range of related services. The company’s broad portfolio of life-saving therapeutics is used in the treatment of individuals with hemophilia and other bleeding disorders, immune deficiency disorders, and inherited emphysema; for the prevention of hemolytic diseases for the newborn; in cardiac surgery patients; and in shock and burn victims. Additionally, ZLB Behring operates one of the world’s largest, fully owned plasma collection networks. ZLB Behring is a subsidiary of CSL Limited, a biopharmaceutical company, which operates worldwide from its headquarters in Melbourne, Australia. For more information, please visit www.ZLBBehring.com.

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