Just when you think you are getting somewhere along comes a story like this one:
A recent article in the Chicago Sun-Times about the coming release of epidiolex really got me to thinking about the gulf that exists between real life and the lofty realms of “national” organizations. The article featured quotes from Ayesha Akhtar, director of education at the Epilepsy Foundation of Greater Chicago. Ms Akhtar works on the frontlines of epilepsy. She said there has been a “flood of inquiries from people who were “ecstatic” about the FDA’s announcement.” She termed the drug’s approval a “sea change” for epilepsy treatment.
That is quite different from the tepid statement released by the national office of the Epilepsy Foundation (EF) which, in a press release, said they were “pleased.”
It has always seemed to me that a disconnect exists between national offices and their local chapters. The use of cannabinoids in treating epilepsy, particularly Dravet syndrome and Lennox-Gastaut syndrome, has been public since 2011 when the Stanley brothers of Colorado developed Charlotte’s Web for young Charlotte Figi who was five years old at the time and suffering dozens of seizures a day. The cannabis cultivar developed by the Stanley brothers was rich in cannabidiol (CBD) and it stopped Charlotte’s seizures, for the most part. When the story was featured in the CNN special entitled “Weed” it was truly a watershed moment which was capped by Dr. Sanjay Gupta apologizing for turning a blind eye to the medical potential of cannabis.
It’s impossible to know how many parents of children with intractable epilepsy turned to CBD but it is safe to say thousands. Local chapters of the Epilepsy Foundation were inundated with questions and the national office began taking steps by encouraging research and rescheduling. And there is an excellent web page at the EF website. But there is still a reticence to embrace the issue fully. Indeed, when the American Cannabis Nurses Association (ACNA) requested a booth at the annual meeting of the Epilepsy Foundation in 2017 they were denied.
Somehow I think the Chicago chapter of the EF would be happy to have an ACNA exhibit table.
Some parents are concerned that the release of Epidiolex will result in a crackdown and curtailment of products like Charlotte’s Web. Others are concerned that epidiolex is an isolate, not a true plant derivative. They point to the “entourage effect” and express concern that the FDA-approved medication will be “too pure,” perhaps providing relief for a period of time but eventually failing.
These are the battles that are ahead of us. I’ve got a pretty good idea which side of the argument the EF will come down on.
Recently I had the wonderful opportunity to visit the Wellcome Trust Library in London and review the archives of Elizabeth Brice and the UK chapter of the Alliance for Cannabis Therapeutics (ACT). A history student from Bristol University alerted me to the existence of these archives. He was writing his undergraduate dissertation on the role of patients in changing the attitudes toward medical cannabis in the United Kingdom so it is no surprise that he focused on Elizabeth. For much of the 1990s Liz was THE face of medical cannabis in Britain. She was a powerful voice for the issue and she was also an MS patient.
Multiple sclerosis (MS) is quite prevalent in Britain. At one time there was a theory that MS tended to cluster in cold climates. Whether that is true or not I don’t know but it does seem to me that most MS patients I have had the pleasure to know have been from northern climes. Elizabeth read that cannabis could help her MS and after some careful trials she determined that it was, indeed, very helpful. She set out to help others and almost single-handedly turned the tide of public opinion. She also became friends with a fellow named Geoffrey Guy who would establish GW Pharmaceuticals in England. Dr. Guy was determined to establish a cannabis-based medicine that would be available through the conventional channels of doctor-patient-pharmacist. He succeeded in developing Sativex. Liz was among the first to use the drug and found it quite helpful.
Sativex has been controversial but a recent study in Italy found it to be helpful for MS patients. Here is the link: https://multiplesclerosisnewstoday.com/2018/06/29/sativex-relieves-pain-multiple-sclerosis-italian-study/. Liz would be happy to read this report. Unfortunately she died in 2011 at the age of 54, the same age as Robert was when he died (in 2001). These heroic patients get too little credit for today’s booming green rush. I’ll be writing more about Elizabeth and the other brave souls who were the true pioneers of medical cannabis.
Monte Content is a Denver-based company that creates 2-3 minute educational videos on various topics relating to cannabis. Those videos are then put onto a kiosk that can entertain patients and customers as they wait to be admitted into a dispensary. While in Denver recently Monte Content asked me to sit down for an interview on the history of the medical cannabis movement. You can see the results here. Feel free to share and if you own or are affiliated with a dispensary consider contacting Monte Content about their product.
On July 13, Dr. Weiss testified before the Subcommittee on Crime and Terrorism, part of the Senate Judiciary Committee, on the topic of “Researching the Potential Medical Benefits and Risks of Marijuana.” Laying aside what seems like an inappropriate subcommittee to hear testimony on the science of cannabis (the focus is crime and terrorism), the testimony did release some interesting tidbits.
World got you down, bunkie?
There’s good reason. Terror and unrest seem to abound. Brexit threatens to isolate the U.K., casting it back to the 1950s. Donald Trump wants America to return to that time as well, with his nativism and clearly racist comments. And then there is Orlando—the slaughter of 49 innocent souls, most in the prime of their lives, murdered by a deranged man who had as much to do with ISIS as Lee Harvey Oswald had to do with Communists. Don’t get that connection? You need to learn your history.
The use of cannabis by those experiencing post traumatic stress disorder (PTSD) is well known, but cannabis doesn’t cure PTSD. In fact, there are many who feel that PTSD can never be cured since the underlying problem is memory of psychological trauma that can never be fully erased. PTSD, like grief, must be assimilated into […]
As we enter the second decade of state-authorized medical cannabis the growing pains are evident and the maturing industry is entering a time of reckoning. Having millions of Americans legally using cannabis, medically or otherwise, is a true victory but, frankly, the time has come for a bit of reform within the industry. Those of […]
Ma Bell is long gone, replaced, it seems, by Father Facebook.
Back in the 20th Century, Bell Telephone was often referred to as Ma Bell because, in the words of Urban Dictionary, it was “the entire national telephone network.” It’s true. Many people can recall a time when Ma Bell was the only telephone service in the country. Lily Tomlin’s career got a big lift with her snarky telephone …..
Source: Father Facebook
Recently two U.S. cannabis reformers Steph Sherer of Americans for Safe Access (ASA) and Michael Krawitz of Veterans for Medical Cannabis Access (VMCA) traveled to Geneva to address a committee of the World Health Organization (WHO) about cannabis reform. In the complicated scheme of international drug control, WHO is similar to the U.S. Food and […]