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The Higher Learning LV Interview: Karen Gray. In January 2023, Higher Learning LV interviewed Karen Gray, a medical cannabis advocate located in Edinburgh, Scotland.
Gray is one of a group of parents of epileptic children who have witnessed relief from cannabis- and hemp-based medicines, typically in the form of oils that are administered sublingually via a tincture (those harboring perceptions involving juvenile medical cannabis patients smoking joints during recess can allay their fears).
The Higher Learning LV Interview: Karen Gray
Gray is also Secretary of Intractable, a U.K.-based nonprofit launched in 2022 that supports the parents of epileptic children who find efficacy in the use of cannabis oil. The chief metric of this efficacy is the number of seizures experienced by their children. Many parents of children with intractable epilepsy—meaning that no conventional treatment has delivered positive efficacy (in this case, a reduction or cessation of seizure activity)—have found improvement via cannabis oil.
She is active on social media and regularly featured by U.K. and international media outlets. Gray and a small group of likeminded parents of epileptic children have unofficially banded together to solicit the government of the United Kingdom, which manages a socialized health care system, to make cannabis oil available for the treatment of their children.
The Interview
The Higher Learning LV Interview: Karen Gray.
Higher Learning LV: "Thank you for taking the time to talk to us, Karen. Your son, Murray, suffers a special version of epilepsy called Doose Syndrome that is resistant to conventional drugs and therapies. Can you tell us how you discovered that cannabis oil might help control the up to 100 daily seizures Murray was experiencing?"
"Murray, now 10, started having seizures when he was two years old. They gradually became worse over the next three years."
Karen Gray: "Murray, now 10, started having seizures when he was two years old. They gradually became worse over the next three years. By January of 2018, he was having many tonic clonic seizures each day and ended up in a non-convulsive status epilepticus. This means he was in a hospital bed in a vegetative state, unable to move, talk, or eat. It was then that Murray was diagnosed with Doose Syndrome, a rare untreatable form of epilepsy.
"Murray was put on many medications over the course of a year that did not help stop the seizures. He was also suffering from drop seizures, myoclonic seizures, and absences. Hundreds of seizures every day! I was then told there was very little chance of any more medication helping to reduce the seizures.
"It was at this point that I started to research cannabis oils as a medication. I started a petition to access medicinal cannabis through the National Health Service (NHS). We collected more than 242,000 signatures for the petition, which I hand delivered to Downing Street. The law changed in November 2018, allowing clinicians to prescribe cannabis oils. However, no NHS clinicians are willing to do so.
"It was at this point that I started to research cannabis oils. I started a petition to access medicinal cannabis through the National Health Service. We collected more than 242,000 signatures."
"Meanwhile, Murray was put on steroids for two months in early 2018. Three months of the steroids caused him to gain two stone (28 pounds) in weight! He was only five years old. Sodium valporate caused a blood disorder. He had to endure five blood transfusions and two lumbar punctures. As soon as we weaned Murray off sodium valporate, his blood returned to normal.
"We tried the ketogenic diet...twice. Murray wouldn't eat anything apart from the keto blueberry muffins that I made. But then he got sick of them! It wasn't working.
"Murray was given Epidiolex, a CBD isolate provided through the NHS, in August of 2018. It reduced seizure length, but also caused chronic diarrhea several times a day. He was attending school each day in his wheelchair at this point. School were phoning after an hour to ask me to collect him as they couldn't cope.
"We were very grateful at the time that his epilepsy team got Epidiolex for him. We were really disappointed that it stopped working in December of 2018. He ended up back in hospital in status (intensive care) a month later.
"In March of 2019, Murray had been in hospital for three months and was terribly ill. His breathing had started to decline. We thought we were going to lose him."
"In March of 2019, Murray had been in hospital for three months and was terribly ill. His breathing had started to decline. We thought we were going to lose him. I begged the doctors to prescribe Bedrolite, a Dutch cannabis oil that was already being prescribed to two children in the U.K. Unfortunately, the doctors refused.
"I decided to go to Holland and found a Dutch doctor who was willing to prescribe the oil. Over the course of a very stressful three months—during which we were illegally bringing the oil into the U.K—Murray started to get better. Fast forward to today: Murray takes the Full Extract Cannabis Oils (FECO) Bedrolite [CBD] and Bedica [THC] and he has been seizure free since June 2019. He attends school full time and no longer needs his wheelchair.
"Unfortunately, we have been paying £1,300 [approximately $1,550] for his medicine each month since 2019. It is a huge strain and burden having to find that kind of money each month."
HLLV: "You utilize a product from the Netherlands called Bedrolite from the company Bedrocan that features relatively low-THC, but is full-spectrum. This is, biochemically speaking, very different from a cannabinoid isolate product such as Epidiolex. This treatment has obviously achieved a positive outcome in terms of the fact that your son Murray has been seizure-free since 2019.
"I believe that CBD isolate could help some people. However, it was not as effective as whole plant oils (which include delta-9 THC) for Murray."
"Can you tell us more about how use of this treatment has benefited your son and your opinion of full-spectrum cannabis products offering a range of cannabinoids and other molecules (such as terpenes) versus isolates?"
KG: "I believe that CBD isolate could help some people. However, it was not as effective as whole plant oils (which include delta-9 THC) for Murray—and for many of the children that have tried Epidiolex."
HLLV: "The United Kingdom legalized medical cannabis in 2018, yet you and many other parents of epileptic children in the U.K. are paying out-of-pocket to private companies for health treatments that are normally provided by or at least paid for by your government. Can you tell us more about your struggles in the past half decade since the U.K. legalized medical marijuana?"
KG: "Unfortunately, this situation has turned the U.K. into a two-tier health system. Parents are fundraising and begging the public for money whilst the government, with their high salaries, sit back and watch families struggle. The health service will not accept this medicine, apart from the oils that GW Pharma/Jazz make, which have been through U.K. trials. It feels corrupt!"
HLLV: "In 2022, you and a few other families founded a non-profit charity called Intractable, the name of which is a reference to the fact that children like Murray have diseases that are not easily relieved or treated. Can you tell us more about this organization and the goals of you and the other founders?"
"It's hard enough having a child with additional needs and having seizures without the added pressure of having to fundraise each month to pay for the only medication that reduces or stops seizures."
KG: "We set up Intractable to fundraise for the cost of the prescriptions to ease pressure on families. It's hard enough having a child with additional needs and having seizures without the added pressure of having to fundraise each month to pay for the only medication that reduces or stops seizures. It took a year to achieve Charity commission approval and we are delighted that they have accepted our Charity. We funded our first family recently and hope to fund many more."
Learn more about Intractable here.
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