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Help at Christmas Grant Fund 2022

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With everyone feeling the strain of increased bills this winter, we wanted to provide a small token of support over Christmas.

We have set aside £5000 to support 50 families with £100 worth of Post Office Giftcard which is available to be spent in over 130 stores. Anyone can apply (who has a child using CBD/Cannabis) those with a private prescription will be prioritized. Applications will be online and submitted to our funding committee board who will make the decisions.

We hope this makes a small difference this Christmas.

The closing date for applications is 4th December 2022

Click here to apply :
https://forms.gle/HHPfAudp1R3wWxY28

Families speak out of feeling abandoned as little progress is seen.

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The benefits of cannabis seen in children suffering severe treatment resistant epilepsy spearheaded the change in law of 2018 to allow cannabis to be prescribed.Through the efforts of families working collectively in early 2019, 20 children were prescribed cannabis privately and cannabis medicines dispensed by independent pharmacies before any cannabis clinics existed. Through their continued campaigning and advocacy it opened the eyes to the general public and helped progress the emerging private sector attracting investment.

Today four years on there are little over 50 prescriptions for children and very few effective products available. We have seen only three clinicians prescribe unlicensed cannabis medicines over the four years, with one retiring, the remaining two have their books closed to new patients. In contrast we have seen a slow but steady increase in prescribing for adults, with over 100 clinicians and an estimated 22,000 adult patients prescribed.

Severe treatment resistant epilepsy is a rare disease, the cohort of patients makes up only 1% of all the diseases that cannabis can treat, yet it’s one of very few which is life threatening. Since the change in law of 2018, 4800 people diagnosed with epilepsy will have died, many of which are children. There is an unmet clinical need with severe lack of funding for research in epilepsy and very few new medications coming to market, access to cannabis can literally mean life or death.

The UK private sector as recently reported by cannabis health magazine have been doing families a disservice by not seeking to fund clinical trials.

“NHS access to full extract cannabis medicines will only become available through clinical trials of products through initiatives like the Innovative Licensing and Access Pathway (ILAP)  which is designed to support innovative approaches to the ‘safe, timely and efficient development of medicines’. It is open to both commercial and non-commercial developers and aims to speed up the time it takes to get a medicine to market in order to improve patient access. NIHR has also committed an amount of funding to innovation they will subsidise clinical trials which they think have longevity. The manufacturers, the people who are making the drugs, are not doing the research that the clinical communities are calling for.”

Although generally there is a large volume of data across the world that supports cannabis in being safe and effective, to date, all privately prescribed cannabis medicines are unlicensed and very few come with data in the product to support their use. Neurologists don’t have the required information to make the most informed prescribing decisions which has been a consistent barrier to progress.

Families have spoken of feeling abandoned with little support, that focus from industry has shifted to the more profitable and easier routes to anxiety and pain. Very few clinics are seeking to bring in paediatric prescribers and very few producers looking towards clinical trials. To expand private access and ultimately population wide prescribing through the NHS much needs to change.

For many children it’s already too late, sadly we have seen children pass away and even recently due to supply chain issues children return to many hundreds of seizures per day with no alternative options available. We are still in a situation that families face uncertainty this Christmas as to whether the oil their children are prescribed will continue from January 2023 and many thousands more left to seek treatment from illicit sources.

 

Alfie celebrates two years seizure freedom – Mum Hannah calls for change.

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Alfie Dingley suffers PCDH19 which is a genetic mutation and the cause to his severe treatment resistant epilepsy. In 2018 mum Hannah was center of a high profile campaign which led to a license being granted to allow Alfie to receive prescription cannabis and a few months later in November saw the change in law to allow prescribing of cannabis for the population of patients who needed it.

Thursday 28th April 2022, Hannah, Drew, Annie and Maggie celebrated two years seizure freedom. This freedom has allowed Alfie to thrive and live the best life, and has had a big impact on the quality of life for the family with Hannah now able to start a new career and work full time.

In 6 months we will be marking four years since that change in law, and to date there have only been three NHS funded prescriptions of full extract cannabis oils.

Hannah has called upon the BPNA and leading neurologists to meet with her to discuss the current blockages to access within the private the sector. The UK currently has one paediatric neurologist prescribing cannabis based medicines for children with severe treatment resistant epilepsy. Despite the great efforts of the Medical Cannabis clinicians society to recruit new paediatric prescribers, there is a great reluctance to come forward. Since the retirement of Dr Martinez of Portland Street Hospital, Dr Beri of Sapphire clinics is unable to refer his patients in the event anything were to happen to him. It was the responsible thing to do and close access and stop taking on any further patients.
This has left a large population of families with no access to prescription cannabis under clinical guidance, forcing them to the over the counter CBD market of illicit sources.

BPNA have always called for further robust evidence in the form of randomised controlled trials, but in October 2021 BPNA reviewed guidance after calls for them to bring them in line with the NICE clarification to prescribing, sadly their stance was a zero tolerance approach impacting access within the private sector with guidance stating ;

“If a paediatric neurologist prescribes an unlicensed CBPM in private practice they should also be certain that the family can sustain the cost of ongoing private prescriptions.

“We consider it unethical to initiate a treatment in private practice for which funding is not available in the longer term. The NHS is unlikely to meet the cost of future prescriptions of an unlicensed medicine that has no Level 1 evidence of efficacy and safety. “

In her letter to the BPNA requesting a meeting, Hannah has explained the huge benefit to Alfie’s health and quality of life. Prescription cannabis has resulted in huge savings to the NHS, as a result of Alfie needing fewer conventional anti-epileptic drugs (AEDs) and practically no need for hospital visits.

Hannah says:

 

Today [Thursday] marks two years seizure free for my son Alfie Dingley.  His NHS prescription has given him two years of attending school, of making new friends and of healing from the years of seizures and devastation which hit him for many years before. It has also meant a chance for our family to heal.

It is a moral and ethical outrage that so many other families are denied NHS access to this medicine and are being forced to go private at huge cost.

On this two year anniversary of my son being seizure free as a result of this life transforming medicine I am challenging the leading doctors concerned, and the relevant regulators, to accept my invitation to discuss this situation.  Many of the parents being denied prescriptions, both on the NHS and now privately, believe that guidance from the BPNA is playing a significant part in the blockage, hence my challenge to them.

The law change has led to an embryonic medical cannabis sector in the UK and a few thousand adult patients now benefit from this medicine for a range of conditions due to the emergence of a number of private clinics.  However, it seems that even these private clinics are reluctant to prescribe to children with epilepsy.

It appears that the BPNA and other leading medical figures and regulators are concerned about whether there is enough evidence that medical cannabis is safe and effective, but there is a vast amount of real-world evidence and observational trial data available from all other the world.

As regards safety, if it isn‘t safe why was the law changed in the first place? Cases like Alfie’s show just how effective this medicine can be. It is the duty of all responsible to work together on a solution and not ignore the suffering of the many families who are currently keeping their children alive by paying for private access

Dr Evan Lewis of Neurology Centre Toronto a paediatric neurologist who actively prescribes cannabis for his patients has taken the harm reduction approach. Families are going to source cannabis regardless, surely it’s safer under clinical supervision where the clinician can learn but also monitor the patient rather than leaving desperate parents to go it alone, potentially opening up their child to further risks.

Photo taken by CLC Portraits.

 

 

 

Building the future of cannabis clinical trials using real world evidence.

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To sign up

https://www.eventbrite.co.uk/e/building-the-future-of-cannabis-clinical-trials-using-real-world-evidence-tickets-267804539587?aff=ebdssbonlinesearch&keep_tld=1

A panel discussion with global experts about integrating real-world evidence into the development of clinical trials on cannabis products.

About this event

This free webinar is hosted by the Canadian Childhood Cannabinoid Clinical Trials (C4T), MedCan Support and Drug Science. Questions can be submitted beforehand to C4T.Canada@gmail.com or through twitter #C4TMedCanDrugScience22. This 90-minute panel discussion will include expert speakers including researchers, clinicians, and parents from Canada and Europe.

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Expert Speakers:

Matt Hughes is the Co-Founder and Director of MedCan Support, a hub for education, advocacy, research and support in the use of prescribed cannabis in paediatrics. Matt has been involved in the UK Medical Cannabis sector since early 2019 when his son Charlie was prescribed cannabis in the treatment of his severe treatment resistant epilepsy. Charlie has seen a dramatic reduction in seizures and much improved quality of life. Matt continues to campaign and advocate for population wide NHS access for children suffering with severe epilepsy and be a voice for patients and families within the growing private cannabis sector joining the executive committee of the UK Cannabis Industry Council.

Dr. Callie Seaman is a Plant Scientist and Formulation Chemist with over 20 years of experience in the hydroponic industry. She has worked with a number of licensed cannabis producers within the UK and internationally as a director and researcher helping to optimize and set up research programs around secondary metabolite production within cannabis. She first completed a degree in biomedical sciences, during which she worked for GlaxoSmithKline within the drug metabolism and pharmacokinetics department. She then went on to complete a PhD in fertilizer chemistry at Sheffield Hallam University whilst setting up a liquid fertilizer manufacturing company, formulating and taking to market a full range of products. As a patient she is passionate about educating everyone about cannabis and helping to support patients through their journey with cannabis prescription, through volunteering for organization such as MedCan Support and PLEA (Patient-Led Engagement for Access).

Dr. Anne Katrin Schlag is a Chartered Psychologist and Head of Research at Drug Science. She leads the research for the Drug Science Medical Cannabis Working Group, focusing on controversies surrounding medical cannabis, the improvement of patient access, and the continued development of education and stakeholder communication about medical cannabis. Dr. Schlag is currently working on progressing the scientific evidence base of medical cannabis to include Patient Reported Outcomes, observational studies (such as T21) and the application of Multi-Criteria Decision Analysis to assess the benefits and safety of medical cannabis. She holds Honorary Fellowships at both Imperial College London and King’s College London, chairs the research subgroup of the Cannabis Industry Council, and is scientific advisor to the Primary Care Cannabis Network.

Dr. Bruce Crooks is an Associate Professor of pediatric hematologist/oncologist at IWK Health and Dalhousie University in Halifax, Nova Scotia. Originally from, and trained in the UK, he has been in Halifax since 2002, caring predominantly for children with cancer, particularly CNS tumours, patients requiring bone marrow transplant, retinoblastoma, and solid tumours. His interest in medical cannabis grew from the interest families had in using it for supportive and curative care, despite the paucity of medical information available. He is interested in helping to determine the place of medical cannabis in the treatment of children, not only with cancers but also with other medical conditions, and facilitating frank and open dialogue between families and healthcare professionals about medical cannabis.

Alexander Repetski is a Media Production Artist and Communications Strategist. His interest in medical cannabis became increasingly important in 2012 when his daughter Gwenevere was diagnosed with intractable epilepsy. He came across cannabis while researching various areas of neuroscience in an effort to understand treatment options. After repeated failures of traditional therapies, he has successfully managed Gwenevere’s seizures with specialized cannabis cultivars, extractions and formulations. He is regularly asked to speak about his experiences to audiences both within the cannabis patient community and the academic world. He has worked in the cannabis industry with data start-ups and LP’s for the past 7 years. Alexander is now focused on assisting research of all forms to advance the evidence-based understanding of cannabis treatment. He enjoys fresh ideas and hugs from his children.

Moderator:

Dr. Lauren Kelly is a Pharmacologist, Assistant Professor in the Department of Pharmacology and Therapeutics, and the Department of Community Health Sciences at the University of Manitoba. She is a Certified Clinical Research Professional and a Systematic Reviewer. Dr. Kelly received her Doctorate in Pharmacology and Toxicology from the University of Western Ontario and completed two post-doctoral fellowships at the Hospital for Sick Children and Mount Sinai Hospital in Toronto. Dr. Kelly is the PI for the Clinical Pharmacology Lab, the Clinical Trials Director and a Scientist at the Children’s Hospital Research Institute of Manitoba, and the Scientific Director of C4T.

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For more information on C4T, MedCan Support or Drug Science please visit the websites below.

C4T: https://www.c4trials.org/

MedCan Support: https://medcansupport.co.uk/

Drug Science: https://drugscience.org.uk/

This event will be broadcast with closed captions on YouTube Live by the University of Manitoba. A recording will be available and sent to everyone who has registered after the webinar.

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Contact

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