The Charlie Foundation's Position on Marijuana Derivatives for Epilepsy Treatment

Posted by on in From, Jim

The Charlie Foundation was founded on the principle that the medical standard of care needs to be be a process of informed, joint decision making between a patient or caregiver, and his/her health care provider. We have the highest regard for the value and necessity of science. We have much less sympathy for the intervention of government in this process. What's more, science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. Many don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government interference. That's where it appears we are with CBD today. If we had waited for a randomized controlled study to be published on the efficacy the ketogenic diet, Charlie would have been seventeen years, rather than 20 months old before he started the diet, and I don't know that we would still have him today. What's more, to paraphrase "first do no harm": "To pretend that multiple drug treatments for children with difficult to control epilepsy are science and then argue against CBD is the cruelest of double standards."

Jim Abrahams, The Charlie Foundation

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  • Guest
    Charlie Wilson Saturday, 16 August 2014

    This is a little off topic but is a parallel story about the medical community. I heard an inteview on Purdue University radio a number of years ago and later bought the book "Deadly Medicine". This book describes how a large manufacturing company wanting to get into the pharmaceutical industry bought a small pharm company and started developing chemical stews to provide a medication to treat heart arrhythmia problems. It details step by step the flawed trials, the rejection of the minority doctors who questioned it, the rush to get it approved by the FDA, etc. This drug finally got a one day hearing in congress with little interest. But after people who were taking the drug started dying the drug was removed from the marketplace. In the book, the author estimates that around 50,000 people died from using this drug. The author went to many of the main players later to interview them about the results of this dangerous drug and only a few would even talk to him. I think the medical industry has some of the most passionate people and brilliant minds to be found anywhere, but they are also some of the most ignorant and egotistical people to be found anywhere. I am very suspicious of the medical establishment as a whole.

  • Guest
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  • Guest
    Mom of a child with intractable epilepsy Sunday, 04 January 2015

    I''m so glad to hear that you are as open minded about the use of CBD to control seizures as you were about the Ketogenic diet. My daughter has been on the diet for 7 years with great success. Now we are facing puberty and things are changing and the diet has been tweeked as much as it can and we need another solution before things get out of hand. I'm hoping that the CBD oil will be our solution. So far seems to be having great success with other kids.

    I wonder if those disputing Charlotte's web oil have ever held their child in their arms while they are seizing praying for the seizure to stop and wondering what they will do if it doesn't.

  • Guest
    Jim Saturday, 10 January 2015

    Only someone who has walked in our shoes could put it so eloquently. Why those who haven’t are given full responsibility for defining our children’s treatment options has always been an injustice.

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Guest Saturday, 04 July 2015