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“It saved Zak’s life, but we’re not out of the woods yet”

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Aged 15, Zak was given six to 12 months to live, but eight years later his thirst for life is greater than ever, says dad, Benedict Lamb.

No parent wants to hear a doctor say there is nothing more they can do for your child. Zak Lamb was 15 at the time, having been diagnosed with Dravet Syndrome, a rare form of epilepsy he had been suffering seizures since he was just 11 months.

Doctors tried various cocktails of drugs to keep it under control, but Zak even at his best he was still experiencing up to 16 seizures a night.

By 15 his condition had begun deteriorating rapidly. His seizures became more frequent and severe, he suffered damage to his brain and nervous system as a result and needed the use of a wheelchair.

Eventually Zak’s consultant delivered the devastating news there was nothing left to try.

“The NHS told us that he had six to 12 months to live which I got in writing,” says Zak’s dad 52-year-old Benedict Lamb.

“As soon as a doctor writes a letter saying that your child is not going to not make it, certain mechanisms kick into place.”

The Make a Wish Foundation reached out and funded a final holiday for the family to make some lasting memories.But Benedict wasn’t ready to say goodbye.

“At that point, I didn’t even know what CBD was, I just Googled epilepsy treatments and it came up,” he says.

Benedict representing the End Our Pain campaign

“I started to do some more research and discovered Epidiolex.”

In his own words, he got lucky. GW Pharmaceuticals was just about to start its first trial for the drug on patients in the United States.

He happened to have a friend who knew CEO Justin Gover and managed to get him a phone call with the pharmaceutical giant.

Unprecedentedly, by the end of the call he had agreed to write a license specifically for Zak.

“A pharmaceutical company would normally licence a drug for a territory or a country,” Benedict explains.

“It’s very unusual for them to write a licence for an individual – but they did that for Zak.”

There was one catch though, he had to sign a non-disclosure agreement, and wasn’t allowed to speak about it for the first year.

A filmmaker and art director, Benedict was making a documentary for Dravet Syndrome UK at the time, but was forced to keep his son’s progress from other parents in similar situations.

“Back then Epidiolex was the holy grail, it was the drug on the horizon and everyone wanted it,” he says.

“It was difficult interviewing all these parents with very sick children and not being able to tell them that Zak was on it.”

Epidiolex was made available on the NHS in the UK for children with rare and severe forms of epilepsy in 2019.

However, many parents have since found it to be ineffective for their child, or report that their progress has plateaued after several months on the treatment.

Zak’s was a rare success story, so much so, his case was used by GW Pharmaceuticals’ in their application for FDA approval of the drug.

After a year of having to keep quiet, Benedict was suddenly asked to speak to anyone and everyone about the benefits of medical cannabis.

“Zak was patient number one and he was very rare at that point,” he says.

“There were another hundred children on the trial and out of 101 children, Zak’s was by far the most successful case.”

Benedict continues: “He went from having between 12 -16 seizures every night to having one to two seizures every few days, in less than a week.

“We are lucky in a way, compared to where we were, Epidiolex is a success and it hasn’t plateaued off which is one of the biggest fears for most people in this situation.”

Now 23, Zak still has seizures, is reliant on a wheelchair and has autism, but since he started on the drug he has been able to attend St Piers College for young epilepsy sufferers and has continued to make improvements.

“CBD has been very positive for Zak,” says Benedict.

“His awareness has grown, we’ve noticed that his interactions with the family, his carers, teachers and other students have greatly improved, as has his vocabulary, attention span, eye contact, his desire to socialise, and the number of hours he is awake every day.

“It saved Zak’s life, he was dying and now eight years on he is doing really well – but we’re not out of the woods.”

Of course, with every seizure he experiences putting Zak’s life at risk, Benedict’s ultimate aim is for his son to be seizure-free.

“Every time you have a seizure, it comes with the risk of death or causing more damage to the nervous system or brain,” he says.

“We’re in a much better place than we were, but Zak hasn’t got any worse or any better. The goal for any parent is to get your child to the point where they have no seizures at all.

Benedict and Zak

“That way the risk of mortality is greatly reduced, their development will come on – and of course, the whole family will be much happier and sleep better.”

As a member of the End Our Pain campaign, Benedict acknowledges the relatively privileged position he is in, in not having to find thousands of pounds each month to fund a private prescription of full extract cannabis.

But he is no stranger to the fear that many of the parents feel – that a treatment keeping their child well, will be taken away.

Zak is due to try a new oil soon, containing higher levels of THC, which they hope will further reduce his seizures and improve his quality of life.

While it is generously being funded by the company for the first six months, after that it will be up for review and Benedict may find himself in the unimaginable position of balancing his family’s livelihood with his son’s life

“If Zak does well on it, there’s always a worry that after six months they will turn around and it’s now ‘X’ amount,” he says.

“It’s a fear that a lot of the other parents have, that when they start running out of money they will have to swap to a cheaper oil and their child will endup back in hospital.

“Juggling that financial stress against your child’s health is a horrible balance to be making, and the only reason they are having to make it is because Matt Hancock failed to keep his promise.”

The health secretary told campaigners last year that he would leave ‘no stone unturned’ in efforts to expand access to medical cannabis, but despite this no more NHS prescriptions have been issued.

Last month, Benedict was among several End Our Pain parents to hold public vigils outside UK health authorities across the country, demanding the Government help fund these children’s prescriptions until they become available on the NHS.

“The bottom line is that we all want the same thing,” he adds.

“For full extract medical cannabis to be prescribed for free on the NHS.”

Feature

First Medical Cannabis Awareness Week launches in the UK – how you can get involved

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The first Medical Cannabis Awareness Week is calling for access to NHS prescriptions two years on from the landmark law change.

Taking place from 1-8 November 2020 the inaugural Medical Cannabis Awareness Week (MCAW) will bring together patients, doctors, advocates and organisations to call for fair access to medical cannabis on the NHS.

On 1 November 2018, the law changed to allow UK patients access to medical cannabis. But since then, only a handful of prescriptions have been issued by the NHS.

Patients are struggling to fund private prescriptions – costing several hundreds of pounds a month – and up to 1.4 million people are forced to turn to the illegal cannabis market.

Most patients prescribed medical cannabis live with chronic pain, neurological or psychiatric conditions, such as fibromyalgia, multiple sclerosis, epilepsy, anxiety & PTSD – yet many continue to face stigma in their day-to-day lives and from healthcare professionals when trying to access this treatment.

Launched by PLEA (Patient-Led Engagement for Access) – a community of medical cannabis patients and advocates – throughout the week patients from across the UK will share their stories about the life-changing impact of medical cannabis and their difficulties in accessing a prescription.

Individuals and organisations from across the sector will take part in online events including a tour of a legal cannabis growing facility, and conversations with patients and doctors.

PLEA advocacy director Lucy Stafford took addictive opiate-based painkillers nearly every day of her teenage years to cope with the debilitating symptoms of the connective tissue disorder called Ehlers Danlos Syndrome.

“I had to drop out of school and live with the horrendous side effects. I was a shadow of myself,” she said.

“When I was prescribed medical cannabis, it changed everything. I’ve learnt to walk after years using a wheelchair and now attend university – I’ve got my life back. All patients in need should have the same chance to live a better quality of life – we need NHS access.”

The PLEA Community will host MCAW during the first week of November each year.

As part of the awareness week, people are encouraged to talk about medical cannabis with  their friends and family, record and share their own story, write to their MPs and even play medical cannabis bingo (have you been called a stoner when talking about your medicine? Has anyone ever suggested you’re just after a legal high?)

“It’s time to end the inequality and ensure everyone who needs it has the opportunity to benefit from medical cannabis treatment,” said Abby Hughes, PLEA outreach director.

“During MCAW, we’re calling for fair access, we’re promoting medical cannabis education for all and we’re directly addressing the stigma faced by patients. We want people to have conversations about cannabis, ask questions and be open-minded.

“Cannabis medicines are changing people’s lives around the world. In the UK, people are forced to pay privately, and it’s not right. Medical cannabis is keeping children with severe forms of epilepsy alive, and it’s allowing people with chronic illnesses and conditions to live normal lives.”

PLEA advocates for quality of life with medical cannabis, enabling patients to access their medicine free from stigma, geographical inconsistencies, and financial barriers and supports research into the safety and efficacy of cannabis-based medicinal products, to enable evidence-based prescription for all.

Dr Mala Mawkin, head of market development at Cellen Health and advisory board member at PLEA added: “Even though doctors have been able to prescribe Cannabis based Medicinal Products since 2018, healthcare professionals are still not equipped with the knowledge and tools to prescribe in the UK.

“We have made huge progress to be able to have pharmaceutical-grade THC/CBD medicines for patients that are cheaper and safer than the illicit market. The next steps are to invest in research, medical education and address the stigma faced by patients.

“Events during MCAW are here to show patients and healthcare professionals it is essential to talk openly about medical cannabis to address the unmet clinical needs of people living with chronic conditions.”

You can join advocates and organisations to share your PLEA on social media using the hashtag #MCAW2020

Follow @PLEA_community on Twitter and Instagram.

For more information and full programme visit www.medicalcannabisweek.org.uk

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Feature

‘I moved to Spain to get access to medical cannabis’

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Award-winning campaigner Alicia Maher is doing a PhD in the regulation of medical cannabis in Ireland, but she’s had to move abroad to access her life-changing medication.

Alicia Maher has one of those unimaginable stories. When she went into hospital to have her tonsils removed at the age of 17, she never expected to leave more than six months later with a lifelong disability.

After what should have been a fairly standard procedure she suffered hemorrhages in her throat and had to undergo several more surgeries. Then, while recovering in hospital she started bleeding from her bowel and doctors discovered Alicia had ulcerative colitis, a form of inflammatory bowel disease.

Things escalated quickly and one night her large intestine burst and she was rushed into emergency surgery.

The intestine had to be removed and Alicia woke up with an ileostomy bag.

“This was 2001 –  I hadn’t heard of ulcerative colitis or crohn’s at the time,” she says now.

“I didn’t even know what an ileostomy bag was, I just woke up with it. For years I went to counselling and to try and accept it.”

The procedure was always supposed to be reversed, but in 2006 precancerous cells were discovered in her rectum and it had to be removed, meaning the stoma was permanent.

It was following further complications after surgery, that the chronic pain started.

“After that operation was the first time I started having chronic pain and it never went away,” she says.

After six years of being prescribed painkillers and patches Alicia was referred to a pain specialist who discovered that the cause of her pain was a broken coccyx.

She was offered surgery, steroid injections, and more medication. And then, if that wasn’t enough, in 2015 she developed sciatica.

By this point Alicia was on up to 30 tablets a day, from paracetamol to heavy opioids such as tramadol.

“They just kept adding more and more medication and it went on like that for years,” she says.

“The side effects of the medication had become absolutely horrendous. I missed a lot of time off university because as soon as I got up I’d have to take 10 opioids, and I’d be asleep again within half an hour.”

She adds: “It really affected my breathing so I couldn’t really do much. I had absolutely no quality of life.”

In November 2018 Alicia tried cannabis for the first time when a friend from New York sent her some oil and a vape cartridge.

“It worked straight away for the pain and I decided there and then that I was going to come off the medication,” she says.

“I didn’t know what was going to happen or whether it was going to get rid of the pain altogether, but I slowly started to cut down on the tablets.”

After she had been able to reduce her medication by half, Alicia broached the subject with her doctor, who was supportive and agreed to apply for a ministerial license to prescribe medical cannabis.

However the licence needed to be signed off by her consultant, who at the exact same time left the public health system to go private.

Alicia explains: “I no longer had a pain consultant and because I’m a public patient it took until January 2019 to be referred to another one.”

Although he agreed to sign it off, the process had taken so long that in November 2019 Alicia and her husband left their home in Limerick – where they were both studying PhDs – to move to Spain, where she could more easily access her medication.

“At the time I was just buying cannabis illegally and sometimes it would work and sometimes it wouldn’t. I never knew what strain I was getting or how strong it was,” she says.

“We knew that they had cannabis clubs in Spain and that I’d be able to go in and buy it, so we agreed that we would move until I got the licence through.”

Alicia continues: “It was really hard, we literally had to leave everything, our apartment, our family and friends.

“It’s worth it, knowing that we can access cannabis here but there’s a huge downside. We expected to be home a lot sooner.”

Alicia’s licence was approved in May this year, but due to the coronavirus outbreak the couple have been unable to return to Ireland.

“The doctor advised me not to travel due to my underlying health conditions. Now we don’t know when we’ll be able to get home,” she says, desperate to return to Limerick and finish her PhD thesis on the regulation of medical cannabis in Ireland.

Inspired by her own battle, Alicia hopes it will help influence legislation around medical cannabis in the country.

Ireland launched the Medical Cannabis Access Programme in June 2019, allowing consultants to prescribe to patients that have failed to respond to treatments for spasticity associated with MS, intractable nausea and vomiting associated with chemotherapy and severe, refractory epilepsy.

But so far no one has been prescribed cannabis through the scheme.

Patients can also apply for a ministerial licence, as Alicia has, but often the Government won’t refund the costs, leaving them to pay for it themselves.

“First and foremost I’d like to see the Medical Access Programme up and running for patients who are waiting and I’d like it to be expanded for other medical conditions,” says Alicia.

“Chronic pain currently isn’t included, but I’d like to see it go even further than that, where there’s evidence from other countries about its efficacy for certain conditions.”

She adds: “I’d love for my PhD to have some influence on the programme – my second chapter is showing the medical evidence that is available for a wide range of conditions.”

Alicia has organised a number of medical cannabis conferences, including an event for over 200 people at the University of Limerick last year, attended by leading politicians and prominent campaigners such as Alfie Dingley’s mum Hannah Deacon and Vera Twomey.

She continues to advocate for wider access and acceptance, even winning a Cannabis Award for Outstanding Patient this summer.

“It was really nice to be recognised, but it’s just sad to see that there has still been no progress,” she says.

To say Alicia’s life has been shaped by medical cannabis is an understatement. Does she ever wish things had taken a different course?

“I struggled with it for many years, but I’m happy now with how things have turned out,” she adds.

“Since I started taking cannabis it’s like I have returned to my old self, to how I was before I was sick.”

Now she’s just holding out until she can return home.

 

 

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Feature

How pro rugby player got ahead of the game with CBD

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Faced with a degenerative knee injury, professional rugby player Grayson Hart feared he was heading for opioid addiction until his search for an alternative led him to CBD.

“You’re probably going to have to retire’’ are the words no professional athlete wants to hear.

Growing up in New Zealand, former Bedford Blues halfback Grayson Hart (pictured above, left) had always dreamed of being on the rugby pitch.

But his career almost came to a premature end when a routine medical examination brought to light a potentially life-changing injury.

Grayson had just been offered a contract in Edinburgh, but a scan revealed a serious degenerative knee condition.

“I had been having a bit of trouble with my knee, it was a bit sore and swollen throughout my last season, but I’d just take painkillers on a match day to help me through,” he says.

“It didn’t seem that bad, I’d never even missed a game.

“I was called into the medical room and told my knee was really bad and that I was probably going to have to retire.”

Grayson sought a second opinion and he was allowed to continue playing rugby, despite several medics warning he may need a knee replacement by the time he was 40.

“Over the next two years I was heavily reliant on painkillers, every day and they were just getting stronger and stronger until I was using opioids,” he continues.

“I could see how people got addicted. I saw firsthand teammates who were addicted to painkillers and I’ve seen addiction in my family and I knew it wasn’t the way to go.”

Desperate not to go down that route, Grayson began searching for an alternative option. He tried everything from special diets and natural supplements to various forms of rehabilitation, but none of them allowed him to cut out the painkillers completely.

Then he read an article about a professional UFC fighter who was taking CBD.

“He was saying this was a completely natural, non-psychoactive compound derived from cannabis and that it really helped with his pain, inflammation and recovery,” says Grayson.

“I thought ‘how can an athlete be taking cannabis products?’”

Grayson discovered CBD had just been removed from the world anti-doping banned substance list and that if he could find a certified brand it would be safe to use. But with the industry still relatively unknown in the UK he reached out to America to try CBD products

“I found some of the products helped me hugely. I noticed like the pain and swelling in my knee improved significantly over a two week period of having CBD in my system,” he says.

“I was able to break the cycle of painkillers for the first time in two years, I was over the moon.”

But he knew he was still taking a risk, and despite his team doctor noticing the improvement in his knee, he advised Grayson against taking CBD.

“I really wanted to get away from the painkillers, so for me it was worth the risk for my overall health and well being, he adds.

“But I knew it wasn’t 100 percent certain, because I couldn’t find any brands that were certified.”

Grayson and his team mate Adam, began reaching out to CBD companies for clarity.

None could offer them any guarantee that their products were safe for athletes, but their efforts led to a chance opportunity with one of America’s leading laboratories, who offered to create the plays a bespoke oil.

“We were just a couple of rugby players who loved CBD and wanted to buy products we could trust, but we thought we’ve got an opportunity here, if we can make this happen,” says Grayson.

“Neither Adam or I had any business knowledge, but we both convinced our wives that it was a good idea to invest all of our hard earned savings into launching this company – and that’s how Pure Sport CBD came about.”

On its launch two years ago, Pure Sport was the only Banned Substance Control Group (BSCG) certified brand (it is now one of four worldwide), tested by the most advanced cannabinoid testing kit in the world, ensuring it is completely safe for drug-tested athletes.

Additionally, it ensures that the strength on the label is guaranteed, the products are screened from contaminants and are completely free from THC.

Their products are now used by hundreds of professional athletes, with endorsements from the likes of former All Blacks Liam Messan, Jerome Kaino, Colin Slade and Victor Vito.

Grayson admits: “I entered the business quite naively and didn’t realise how much of a responsibility it would be, but launching the brand showed me that there were so many people out there who wanted to try CBD but wanted something they could trust.”

Pure Sport now has customers across the globe – from athletes to office workers – with the main benefits reported as improved sleep quality, pain relief, reduced inflammation, muscle recovery, stress and anxiety.

He continues: “From day one we knew that this was an opportunity to prove to a wider audience that these products are 100 percent safe and effective – elite athletes are not going to endorse something that doesn’t work.

“We wanted to break down the stigma around CBD and show that it can be seen a health supplement of its own.”

Grayson – who still takes CBD everyday to manage his knee injury – wouldn’t turn to conventional painkillers again unless absolutely necessary, he says: “I’ve found an alternative that is completely natural, healthy and beneficial for the body, instead of the huge amounts of painkillers I was taking as an athlete, with little guidance on how addictive they were,” he says.

He’s lucky that he got ahead of the game when he did.

“There’s this culture in sport that if you’re experiencing pain you can get through it with painkillers, and you don’t take them you won’t be able to train and play on the team,” he adds.

“I’m really grateful that there’s something out there that is able to break that chain.”

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