‘I break the law to buy my child’s life-saving cannabis drug’ | Global News Avenue

Until recently, Jane described her family as normal, law-abiding citizens. But that changed last summer when the stay-at-home mom began illegally buying cannabis oil online for her daughter Anne.

The 10-year-old suffers from a severe, rare form of epilepsy that is resistant to conventional treatments.

At her worst, Anne was hospitalized 22 times in 22 months. Doctors warned Jane that her daughter would most likely die from an epileptic seizure.

Jane said she didn’t want to break the law, but the seriousness of Anne’s condition made her care less. We have changed their names to protect their identities.

“(Anne) deserves to be happy. She deserves to have this quality of life,” Jane explained. “If I’m breaking the law by providing her with this quality of life, am I wrong or is the law wrong?”

The family cannot afford private prescriptions and a number of clinics have been set up since the legalization of so-called full-spectrum medical cannabis, which includes the psychoactive ingredient THC, which costs around £2,000 a month.

File on 4 Investigates spoke to several parents, including Jane, who are going to great lengths to obtain these medicinal cannabis oils to treat their children with severe epilepsy.

As well as illegally procuring drugs online, some people regularly smuggle drugs from the Netherlands into the UK. It can be purchased legally there, but it is illegal to bring it back to the UK without permission.

Medicinal cannabis was legalized in the UK in November 2018 after a high-profile campaign, but the full-spectrum medicine the parents we spoke to are purchasing has not yet been officially licensed.

Both the NHS and private clinics can prescribe unlicensed medicines, but as far as the NHS is concerned this is rare. In the past six years, fewer than five patients have been prescribed full spectrum cannabis oil on the NHS.

A cannabis-based oil has been approved for use on the NHS to treat epilepsy, but it is only based on the plant’s CBD compound – commonly found in products sold in health food shops. Many families say the drug does not contain all of the compounds they believe play a key role in preventing seizures, including the psychoactive ingredient tetrahydrocannabinol (THC).

Jane spent two years fighting for an NHS prescription for this unlicensed full-spectrum drug. Ultimately, a review agency rejected her daughter’s application.

Unable to obtain cannabis oil on the NHS, she now gives Anne 0.4mg of illegal full spectrum cannabis oil twice a day.

Her price is £55 a bottle, published by the online supplier – much cheaper than a private legal prescription. Both Jane and the supplier broke the law.

Jane said Anne’s seizures have “reduced significantly” since taking the essential oils. “They’re much less severe and don’t last as long.”

But this approach is not without risks. ‘Sarah’, from Dorset, who bought cannabis oil for her four-year-old daughter, who has severe epilepsy, said parents were “probably playing with fire”.

Sarah decided to try it on herself first and said it made her feel extremely uncomfortable. “I thought I was going to pass out.”

Sarah has since raised enough money to pay for legal private prescriptions of full-spectrum unlicensed cannabis medicine and says she has seen a huge improvement in her daughter’s seizures.

MedCan, the parent support charity dedicated to expanding access to medical cannabis, sought to quantify how many British parents were obtaining the drug illegally online.

After reviewing three online forums and interviewing parents, the group counted 382 participating families – which campaigners believe is just the tip of the iceberg.

Elaine Gennard, from Hertfordshire, flew to Amsterdam six times last year to buy full-spectrum cannabis oil for her daughter Fallon. She had a legal prescription from a Dutch doctor but it was illegal to bring it back to the UK without permission.

Elaine said the risk was worth it as the oil cost half what she would have paid in the UK, even after travel costs.

The drug saved 30-year-old Fallon’s life, she said, reducing her seizures from 200 to about eight a month.

Elaine said: “Anyone who has a child like my daughter could die from a seizure and as a mother you go out of your way to take care of her.”

Lawyer Robert Jappie, one of the UK’s leading legal experts on medical cannabis, said smuggling medicines into the UK amounted to international drug trafficking. He said importing Class B drugs carries “significant” prison sentences.

“Realistically, it seems very, very unlikely that anyone will be prosecuted, but that’s not a risk these families should take,” he added. “They should be able to access this medicine safely in the UK.”

The BBC is not aware of any families being prosecuted.

People like Jane are turning to unlicensed cannabis dealers because they are much cheaper than going to private UK clinics.

One dealer (we’ll call him Steve) told us that he copies pharmaceutical-produced medications and gives these oils to parents for free or as donations – this is what he calls a compassion program.

When we raised the potential dangers of supplying these illegal oils as medicines to him, Steve told us that each oil was tested in his laboratory.

“We have the ability to know every molecule, every compound in every bottle,” he said. “We’re not reckless in what we’re doing.”

He seemed unfazed by the possibility of prosecution.

“If you want to send me to jail for stopping a child’s seizure, go ahead and good luck to you.”

In 2019, a year after medicinal cannabis was legalized, the government’s health and social care select committee investigated issues of access to these medicines. “We deeply sympathize with the struggles of patients and their families who see others being treated with cannabis-based medicinal products but do not have access to these products themselves,” its report said.

Lib Dem MP Leila Moran, the current chair of the committee, believes the blame for the current situation lies solely with the government’s lack of action.

“We predicted that unless the government invested in research to actively try to advance this, it might not happen. And that’s exactly where we find ourselves.”

Licensing a new drug requires lengthy clinical trials, usually focusing on one or two compounds. Researchers at Great Ormond Street Hospital and University College London are planning trials to examine the cannabis compounds CBD and THC. This is expected to begin in 18 months.

The Department of Health and Social Care told the BBC that licensed cannabis medicines are often funded by the NHS and there is clear evidence of their quality, safety and effectiveness.

“The NHS is taking an evidence-based approach to unlicensed cannabis treatments to ensure they are proven safe and effective before being considered for wider rollout,” it said in a statement.

An NHS England spokesman said the licensed treatment had been approved by the regulator and recommended by NICE – the body that advises the NHS on best treatment – because it is cost-effective.

They added: “Many doctors and professional bodies remain concerned about unlicensed products because the evidence on their safety and effectiveness is more limited.”

“Manufacturers are encouraged to participate in the UK medicines regulatory process to seek licenses and give doctors confidence to use their products.”