News Briefs:

May 17, 2006
Medical centers around the globe are being informed of how to obtain amytal sodium from Ranbaxy Pharmaceuticals, the exclusive worldwide manufacturer of this critical medication. The Epilepsy Foundation, the American Epilepsy Society and the International League Against Epilepsy are working in cooperation with Ranbaxy in the United States to provide doctors abroad with information on ordering and shipping procedures that were developed and evaluated through pilot testing. 

Because of time involved in this process, which includes meeting local drug import requirements, medical centers are being cautioned not to schedule surgical procedures for which this drug is used until the product is in hand.

Coalition Asks Drug Industry to Keep Patient Assistance Programs Alive

May 12, 2006
The Epilepsy Foundation this week joined 19 other members of the Medicare Access for Patients-Rx (MAPRx) coalition in urging the nation's pharmaceutical industry to ensure continued, uninterrupted operation of patient assistance programs (PAPs) for needy Medicare beneficiaries. In a letter to PhRMA, the drug industry association, the coalition specifically identified beneficiaries who may be unable to afford their prescribed medications even if they are enrolled in a prescription drug plan.

In urging PhRMA to work with its member companies to continue these vital programs, MAPRx highlighted the fact that people with disabilities and chronic health conditions often require multiple medications and may have very limited resources to cover costs of co-payments, while citing the value of drug company patient assistance programs in filling these gaps.

The letter echoed similar calls to PhRMA issued earlier this year by Health and Human Services Secretary Mike Leavitt and by the bipartisan leadership of the Senate Finance Committee.

Doctors Report Three-Stage Brain Surgery for Seizures

May 11, 2006
The majority of children with tuberous sclerosis (TS) have seizures. Surgery can eliminate or reduce the seizures in many of these children but locating their source within the brain is difficult. A surgical team at New York University's Comprehensive Epilepsy Center has had success with a bold three-stage procedure reported in the May issue of the journal Pediatrics.

Children who have TS typically have 2 to 20 tubers (hard calcified growths) in the brain. Which tubers are responsible for the seizures can not be determined by recording the brain's electrical activity from the scalp.

In the first surgical stage, electrodes are implanted and EEG recordings taken to locate where the seizures originate. The second stage involves removal of the seizure provoking tissue. EEG monitoring is continued over the next few days and a third operation takes place to excise any tissue that might still be causing seizures.

Of 25 cases reported in the journal article, 17 children were seizure-free or had less severe, non-disabling seizures two years or more after the surgeries.

According to pediatric neurosurgeon Howard Weiner, M.D., of the NYU School of Medicine, "At some centers multiple-stage surgery would be considered aggressive, but we have established that this type of surgery is safe." But Weiner cautions that this approach should be used for only the most difficult cases, "children with tuberous sclerosis who are having uncontrolled seizures in association with developmental delay or even regression."

Investigative Writer to Discuss Eugenics in America

May 8, 2006
It has been less than a century since state statutes against the marriage of people with epilepsy and laws sanctioning the sterilization of those with the disorder were stricken from the books. These draconian laws of the early to mid-20^th Century in America came out of a sham science called eugenics, the proponents of which aimed to create a superior race. Investigative writer Edwin Black will discuss the eugenics movement with Joyce Bender on "Disability Matters," Tuesday, May 9, from 2 p.m. to 3 p.m. Eastern Time on the web.

Some 60,000 Americans, including people with disabilities, were forcibly sterilized in eugenic campaigns organized, according to Black, by American corporate philanthropic organizations. Black received the International Human Rights Award from the World Affairs Council for "War Against the Weak," in which he documents these campaigns.

"Disability Matters" is heard on the Voice America Channel. The toll-free number for callers-in and listeners is 1-866-472-5788.