Kids With Epilepsy Are The Victims Of The UK's Medical Cannabis Stalemate

UK government's Health. Social Care Committee in a July report. "There needs to be far clearer communication that this is not the case."

Adding to the frustration to families who think their kids could benefit from such drugs, the UK is the world's largest producer and exporter of medical cannabis, according to the International Narcotics Control Board.

Alfie takes his cannabis oil medicine in front of his father, at their home on January 13, 2019 in Kenilworth, England.

'We have to fight the system'

Hannah Deacon, ambassador of End Our Pain, a collective of families campaigning for better access to medical cannabis, told CNN that families like hers were struggling; many felt they had no choice but to seek out cannabis medicines on the black market.

Deacon's son Alfie suffers with a rare form of epilepsy that once caused him up to 150 seizures a month.

Alfie Dingley watches a video on a tablet as his parents Drew Dingley and Hannah Deacon prepare lunch at their home on January 13, 2019 in Kenilworth, England.

After her son Alfie, now 7, spent a month in intensive care in July 2017, she asked his neurologist for an alternative to the powerful steroids with which Alfie was administered during intense bouts of seizing.

"I said to him at that point, what about using medical cannabis if we go abroad and try it?

"His words were to me: 'you have no choice.'"

Deacon traveled to the Netherlands, where a pediatric neurologist in the Hague prescribed Alfie Bedrolite, a CBD extract produced by Bedrocan, the government-regulated supplier to Dutch pharmacies. Deacon knows several other families who were forced to do the same -- even though it's a criminal offense to bring the drug into the UK without a license.

But Deacon has no regrets. Her son's seizures have since stopped completely.

"We should be helped, but we have to fight the system. We're fighting the establishment. We're fighting the doctors. We're doing media, trying to push our stories forward, and it's wrong. We shouldn't have to do it. I mean, if I hadn't done it, my son wouldn't be here."

lmarie Braun at home with her son Eddie.

'We felt desperate'

Ilmarie Braun also took her epileptic son Eddie to the Netherlands to get a prescription for Bedrolite that they had to bring back illegally.

"It's something that, if you had asked me three years ago, I would have never considered," she said.

Eddie, now four years old, was born functionally blind due to peculiarities in his brain, and started seizing after seven months.

"We tried everything that was recommended, the normal treatments," she recalled. "He was assessed for brain surgery, a hemispherectomy where, had he qualified, they would have literally cut his brain in half."

Braun is relieved to have pursued cannabis products instead. The frequency of Eddie's seizures has slowed, and he now sleeps through the night. The family has subsequently weaned him off all pharmaceutical drugs.

"We didn't start CBD until a year after his diagnosis, when it was obvious nothing else was working, and we felt desperate."

Curtailing Eddie's seizures with CBD costs the family £2,000 ($2,480) per month for repeat private prescriptions. Like other families in their predicament, they rely on fundraising through friends and family, the internet and local community.

Barriers

The government review published in August into the barriers to prescribing and accessing cannabis products recommended a variety of steps to combat the apparent impasse.

While consistency of product and cost-effectiveness were both highlighted as potential barriers, the "vast majority" of clinicians interviewed for the report suggested a lack of data demonstrating adequate safety presented the "major hurdle to prescribing."

In the case of treatment-resistant epilepsy, however, the report recommended a new approach: first, "support one or more randomized control trials", but also "determine an appropriate alternative study design that will enable evidence generation for those patients who cannot be enrolled into a standard RCT."

"A UK-wide paediatric specialist network should be established to provide specialist clinical expertise," the report concluded, to "support discussion of complex cases, provide support to clinicians and to assist in evidence generation."

In the United States, the Food and Drug Administration last year approved Epidiolex, a drug derived from marijuana to treat rare, severe forms of epilepsy. However, the NHS does not currently recommend it even though the European Medicines Agency has approved its use in the UK.

Alfie has a horse riding lesson n January 13, 2019 in Kenilworth, England.

Cautious welcome

Welcomed among the parents contacted by CNN as a signal of positive change, the report urges that these alternative studies ought to commence "as soon as possible."

Former government drugs advisor and Head of the Centre for Neuropsychopharmacology at Imperial College London, Professor David Nutt said that authorities need to "learn from the parents who have gone overseas to find experts to treat their children and have seen remarkable outcomes."

Deacon agrees the best way to break the cannabis stalemate gripping the healthcare system is by accepting other forms of data.

"Cannabis should be treated as an exceptional medicine. It doesn't fit within a pharmaceutical mold."

"Look at observational trials. Look at anecdotal data. Look at other countries that have been using it for years."

"It's not a one-size-fits-all medication. It's an individualized medicine, and until clinicians and, to some extent, the government understand that, I fear we won't move forward."