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“We are broken, emotionally and financially”: Prime Minister urged to fund medical cannabis

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Elaine Levy's daughter Fallon has a severe form of epilepsy controlled by medical cannabis

The parents of a severely epileptic young woman will stand vigil outside 10 Downing Street on Friday to urge politicians to help fund their daughter’s medication. 

Elaine and Graham Levy’s daughter Fallon, 27, has suffered from a rare form of epilepsy, known as Lennox–Gastaut syndrome, since the age of four.

The couple will hold a vigil outside 10 Downing Street and the Houses of  Parliament on Friday 26 March on what is known as Purple Day – the global day for epilepsy awareness.

After years of exhausting all conventional treatments and suffering up to 200 seizures a month, the only treatment which has proven effective for Fallon is medical cannabis. 

She has accessed cannabis medicines privately since 2018, but despite the law change has been denied a prescription on the NHS.

After years of lobbying for access with the campaign group End Our Pain, the couple’s latest plea comes after they were told that the UK Government would not step in and help fund the private  prescriptions until there was affordable access through the NHS.

Elaine and Graham have been left “broken” emotionally and financially by the pressure of funding Fallon’s prescription, which at one point cost over £2,000 a month. 

In 2019, they were forced to sell their family home and move into Elaine’s sister’s flat. 

“‘We are broken, emotionally and now financially,” said Elaine.

“The sums of money involved are minuscule when set against the overall health budget, but for our children it’s about life and death.”

She continued: “Everyone involved from the Government and NHS say they want to help, but the months drag on and our families have not had any help. 

“Some of the doctors in the leading medical professional bodies constantly say that they want  more evidence that medical cannabis works and is safe, what they fail to acknowledge is that we have got the best evidence of all, that it works for our children. 

“They have been securing and administering it for over two years now with dramatic improvements in our children’s wellbeing. Some of the children have gone from being exceptionally ill to going over a year seizure free.”

Elaine Levy outside Parliament in December 2020.

Since medical cannabis was legalised in 2018, three children in the UK have been granted NHS prescriptions suggesting that the health authorities can find a way of prescribing if they choose to.

Families who have spent tens of thousands on their loved one’s medicines, have been urging Matt Hancock since January 2019 to step in and fund the private prescriptions as an interim measure until the NHS starts to prescribe. 

Despite detailed arguments explaining that it is legally and procedurally possible for the authorities to step in – including an opinion from a QC – the Government wrote to the co-chairs of the All Party Parliamentary Group (APPG) on Access to Medical Cannabis Under Prescription stating that they would not take action.

Speaking at Prime Minister’s Questions on Wednesday, Conservative MP Sir Mike Penning asked Boris Johnson for a meeting with one of the mothers whose child has an NHS prescription to explain that “children’s lives are going to be lost” under the current process.

 “Today, we have three children who have it free on the NHS, and about 150 children whose families have to beg and borrow and remortgage their homes so that they can pay about £2,000 a month,” said Mr Penning.

“I say to the Prime Minister that this is wrong. As a father, like I am, we would do everything possible for our families, and these families are doing everything possible for their children.”

SNP MP, Ronnie Cowan also raised the issue with Mr Johnson, stating: “Seventeen months ago on 23 October 2019, I stood in this place and asked you what you were going to do to get medical cannabis to children suffering from rare forms of epilepsy. You said to me that you recognised their “desperate difficulties”, and that you would take up the matter “personally” with me. Their difficulties are still desperate and you have not taken this up personally with me. 

“In the interim we have developed new medicines, distributed them around the country and given them to people who need them, free of charge. Why are we discriminating against these children? What are they—are they worth less than the general public?”

Mr Johnson said the Health Secretary was working to find a “permanent solution” to the supplies of Bedrocan imports from Holland which were affected by Brexit and pledged to resolve the issue to ensure the supply of cannabis-based products can be “made secure”.

Joanne and Ben Griffiths

But Elaine has pointed out that this is a “funding not a supply issue”.

Joanne Griffiths, the mother of a severely epileptic son and spokeswoman for the parents in the End Our Pain group, commented: “We have been  passed from pillar to post for nearly two years now since the law was changed in November 2018 to allow medical  cannabis to be prescribed. The situation is a complete mess. 

“The Secretary of State, the NHS and the leading doctors are all standing by and watching us have to fundraise thousands of pounds to secure access to the only medicine that helps our children.  

“Caring for a very ill child is incredibly tough in its own right. To have to fundraise thousands on top of that is intolerable. We’ve had to cope with the Covid restrictions on our fundraising. In desperation, we asked Matt Hancock to find a way to use Government and/or NHS money to fund our private prescriptions until the NHS sorts itself out.”

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Six big cannabis sector stories you might have missed this week

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It’s been another week of big news in the cannabis world.

At Cannabis Health, our in depth coverage of the ongoing growth of cannabis as a medical and wellness product continues

Meanwhile, over at Cannabis Wealth, we’ve been following all the big industry and policy news in a week which has seen some important developments..

Been busy and want to get caught up in a hurry?

Here are the six things you need to read to stay in the loop this week.

1. Reprieve for medical cannabis patients

The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.

Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year.

Medical cannabis

Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020.

Read the full story.

2. UK largest’s medical cannabis trial reports back

The first findings from the UK’s largest medical cannabis patient study show quality of life improved by more than 50 percent.

Preliminary results from Drug Science’s Project Twenty21 study, have found medical cannabis significantly improves quality of life for people with life-limiting conditions such as chronic pain, multiple sclerosis (MS) Tourette’s syndrome and post-traumatic stress disorder (PTSD).

Published on Tuesday 11 May, the report is the first real-world data to be collected on medical cannabis in the UK.

Read more here.

3. Harrowing first-hand account of medical cannabis user
Diagnosed with a personality disorder and experiencing debilitating anxiety which left him housebound, Craig – whose name has been changed – had exhausted all treatment options and was losing all hope.
He speaks about how medical cannabis helped save his life here.

4. CBD market set to shrink

The UK’s CBD sector looks set to shrink significantly as the roll out of new regulations continues to batter the industry.

The FSA has confirmed to Cannabis Wealth it received applications for 803 different CBD products – but only 42 have been advanced to the next stage of the process so far.

More than half of all applications (445) were ‘incomplete’ and a further 41 have been withdrawn altogether.

Read the full story here.

5. CBD not linked to single doping case

CBD has not been linked to a single failed drugs test in UK sport despite fears about the undeclared levels of THC in some products.

The World Anti-Doping Agency removed the cannabinoid from its banned substances list in 2017 and since then several high profile athletes have publicly endorsed CBD products.

Even though CBD – which has no psychoactive properties – is not banned, the UK Anti-Doping (UKAD) still warns athletes to be cautious with treatments.

Read our exclusive report here.

6. School’s out for cannabis class

The first class on a pioneering university medical cannabis course have concluded their first year of studies.

The research programme at the Humboldt-Universitat zu Berlin examines the medical and nutritional uses of cannabis, production and the legal and economic frameworks of the business.

It’s the latest sign that medical cannabis is becoming a part of the mainstream education offering and a positive indication that new industry leaders will emerge in the coming years.

Full story here.

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Science finds a way for medical cannabis to relieve pain without side effects

Researchers have developed a molecule that allows THC to fight pain without the side effects.

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Medical cannabis
Many people living with chronic pain have found that cannabis can provide relief. 

Scientists may have developed a molecule which could allow medical cannabis to provide pain relief without any side effects.

Many people live with chronic pain, and in some cases, cannabis can provide relief. 

But the drug also can significantly impact memory and other cognitive functions. 

Now, researchers have developed a peptide that, in mice, allowed THC to fight pain without the side effects.

According to the US Centres for Disease Control and Prevention (CDC) around 20 percent of adults in the states experienced chronic pain in 2019. 

In some studies, medical cannabis has been helpful in relieving pain from migraines, neuropathy, cancer and other conditions, but the side effects can present hurdles for widespread therapeutic use.

Previously, researchers identified two peptides [molecules which are made up of amino acids] that disrupt an interaction between a receptor that is the target of THC and another that binds serotonin, a neurotransmitter that regulates learning, memory and other cognitive functions. 

When the researchers injected the peptides into the brains of mice, the mice had fewer memory problems caused by THC. 

Now, this team, led by Rafael Maldonado, David Andreu and colleagues, has gone one step further to improve these peptides to make them smaller, more stable, orally active and able to cross the blood-brain barrier.

Based on data from molecular dynamic simulations, the researchers designed two peptides that were less than half the length of the original ones but preserved their receptor binding and other functions. 

They also optimised the peptide sequences for improved cell entry, stability and ability to cross the blood-brain barrier. 

Then, the researchers gave the most promising peptide to mice orally, along with a THC injection, and tested the mice’s pain threshold and memory. 

Mice treated with both THC and the optimised peptide reaped the pain-relieving benefits of THC and also showed improved memory compared with mice treated with THC alone. 

Importantly, multiple treatments with the peptide did not evoke an immune response. 

Reporting in the American Chemical Society’s Journal of Medicinal Chemistry, researchers say that these findings suggest the optimised peptide is an ideal drug candidate for reducing cognitive side effects from cannabis-based pain management.

The abstract that accompanies this paper can be viewed here.

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Dutch Government to supply medical cannabis for UK patients until 2022

The Department of Health has reached an agreement to continue the supply of Bedrocan oils

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The Dutch Government will supply medical cannabis to UK patients until 2022

The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.

Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year. 

Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020. 

After outrage from campaigners, the Dutch government agreed to continue supplying the life-saving products until 1 July, 2021 while a more permanent solution was reached.

This waiver period has now been extended until 1 January, 2022.

Health ministers promised to work with officials in the Netherlands to find a “long-term” solution, but according to those at the forefront of the campaign, there is still “some way to go”.

Hannah Deacon and son Alfie Dingley

Hannah Deacon’s son Alfie Dingley, who is prescribed Bedrocan products for a rare form of epilepsy, recently celebrated one year seizure-free.

In a letter to Deacon on Thursday 13 May, the DofH said it was working with the Dutch government, Bedrocan and the Transvaal pharmacy to proceed as “quickly as possible” with the UK production of these medicines.

It added that domestic production is “complex” and that manufacturing “unlicensed herbal medicines” comes with “significant challenges”. 

Deacon said that the UK production of Bedrocan products was the “only solution”.

While other cannabis-based medicines are available in the UK, experts have warned that there is ‘significant variation’ from one product to the next and switching an epilepsy patient’s treatment could be ‘life-threatening’.

“With the 1 July deadline for Bedrolite supply to cease from the Netherlands looming ever closer, we made it clear we wanted an extension to the agreement to stop the situation becoming dangerous for Alfie and the other patients receiving this vital medicine,” commented Deacon.

“The long term solution of Bedrocan products being made in the UK still has some way to go, but it can be the only solution and we thank everyone who is working very hard to achieve this. 

“This is still a long way off from being okay, but for now we have the pressure taken off on the supply issue.”

With limited access to medical cannabis on the NHS, families are still calling for the Government to help fund their children’s prescriptions, which can cost thousands of pounds each month.

Deacon added: “The ever-pressing issue of financial burden on the many families and patients wishing to use medical cannabis in the UK remains and this is a huge issue which needs dealing with.

“There are many ways in which the Government could step in and help access for very vulnerable people and we will continue working as hard as we can to make things better for all.”

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