Carolyn and Mike Burkhead of downstate Maryville do not know what they are going to do. Their 3-year-old daughter Mira has a form of epilepsy that subjects her to severe, debilitating seizures. Her parents have tried nine different medications to treat Mira’s illness, but so far none have worked. The Burkheads’ last hope is cannabidiol, or CBD, a key ingredient in cannabis plants that does not have psycho-active properties, but has shown promise in the treatment of epilepsy. They had hoped that legal CBD, under the pilot medical marijuana program that began Jan. 1, would by available by now. So far it isn’t.
LATEST EFGC NEWS
‘Microlesions’ in epilepsy discovered by novel technique in a study conducted by newly elected EFGC Board Member, Jeffery Loeb, MD
Using an innovative technique combining genetic analysis and mathematical modeling with some basic sleuthing, researchers have identified previously undescribed microlesions in brain tissue from epileptic patients. The millimeter-sized abnormalities may explain why areas of the brain that appear normal can produce severe seizures in many children and adults with epilepsy.
Lisa Thomas is hoping there is a cure for the cost to cure. Thomas, whose 16-year-old son Ryan has epilepsy that causes seizures, takes less than two months to blow past the family’s annual $3,000 deductible because of the high copay costs for her son’s medication. She said it’s not unusual to hit the $10,000 out-of-pocket maximum in copay expenses in six months.
In advance of the American Epilepsy Society’s (AES) Annual Meeting in December, the organization has offered highlights of groundbreaking research being studied at a number of institutions regarding the effectiveness of cannibidiol (CBD) and its derivatives as a viable treatment for people with epilepsy.
333 Patient Groups Join Together to Ask HHS Secretary Burwell to Reduce Barriers to Care in Qualified Health Plans
Three-hundred-and-thirty-three patient groups from around the country have signed onto a letter to Secretary of Health and Human Services (HHS) Sylvia Mathews Burwell calling for immediate measures to reduce barriers to care for patients who have purchased policies through the Health Insurance Marketplace (the “exchanges”). The letter comes as some patients with chronic conditions have faced difficulty accessing crucial medications and other health services they need in some Qualified Health Plans, and as HHS is reviewing plans for 2015.
On July 20, 2014 SB 2636, the medical marijuana law adding epilepsy as a debilitating medical condition was signed by IL Governor Pat Quinn. This amendment includes epilepsy as one of the conditions for which medical marijuana may be prescribed, and that pediatric intractable cases of epilepsy may be permitted to use cannabis oil in the treatment of childhood seizures. The amendment was passed by the Illinois Senate with a vote of 49-5 on April 2, 2014 and the Illinois House of Representatives with a vote of 98-18 on May 21, 2014.
On July 17, 2014, the U.S. Department of Defense announced that it will allocate $7.5 million to epilepsy research due to the alarming increase of people diagnosed with epilepsy because of Traumatic Brain Injuries sustained in the wars in Iraq and Afghanistan since 2006. This initiative was led by Illinois Senator Dick Durbin and Susan Axelrod of Citizens United for Research in Epilepsy (CURE).