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Man with Tourette Syndrome Pleads with NHS To Increase Cannabis Prescriptions

September 19, 2023 Published by

Conor Ryder, from Dorset, England, a man living with Tourette syndrome, is urging the government to make medicinal cannabis more accessible through the National Health Service (NHS), the BBC reports. Currently, he spends thousands on prescriptions from a private clinic as it’s the only treatment, in his experience, that effectively manages his severe tics. The NHS is the U.K.’s publicly funded healthcare system.

Medical marijuana became legal in the U.K. in 2018. But the government insists they need more research to ensure its safety before making it more widely available. 

Cannabis remains illegal on a federal level and for adult use. 

Due to the scarce availability of NHS prescriptions, Ryder pays £300 every month, which, to afford, he dips into his savings. 

“I spoke to my doctor and he said that he… didn’t want to refer me, so I went and referred myself off. I went and looked at the clinics,” Ryder told the BBC. 

Ryder’s situation isn’t unique. Private cannabis clinics across the United Kingdom have grown substantially since legalization, with statistics indicating they’ve issued over 140,000 prescriptions in the past five years. The medicine they sell just isn’t always affordable for patients like Ryder. 

As research published in June of 2023 suggests, building on additional research that also indicates cannabis for the condition, evidence backs up what Ryder says, indicating that THC and CBD can improve the side-effect profile of Tourette syndrome. These include repetitive movements or unwanted sounds (tics) that one can’t always control — and can disrupt one’s personal and professional life. 

According to the Mayo Clinic, tics usually appear between the ages of two and 15, with the average age around six. Tourette syndrome is more commonly seen in males, who are about three to four times more likely to develop it than females.

In this study, they did a double-blind, cross-over trial with people who have severe Tourette’s syndrome. Using random assignment, they gave participants an oral oil-based tincture with increasing amounts of THC and CBD for six weeks, followed by six weeks with a placebo, or the other way around, with a four-week break in between. 

The researchers used the Yale Global Tic Severity Scale (YGTSS) to measure their tics’ severity. They also used video assessments of tics to assess how they affected their daily life, anxiety, depression, and obsessive-compulsive symptoms. 

It’s worth noting that all of these comorbidities are also often treated with medical marijuana. 

They then checked if the results were related to the levels of cannabis compounds in the blood in addition to performing cognitive tests at the start and end of each treatment.

The results suggest that people in the active treatment group significantly reduced their tic scores more than those in the placebo group. This means that the treatment with THC and CBD helped reduce the severity of their tics. However, some people in the active treatment group reported problems with their thinking, memory, and concentration. The research indicates that cannabinoids such as THC and CBD can help people with severe Tourette syndrome by reducing their tics and improving their quality of life. 

Mr. Ryder is not surprised to learn that the private sector of the cannabis industry is booming. For him, medical marijuana has become an absolute necessity. Diagnosed with Tourette syndrome at age 13, he lives with various noticeable tics, from animal-like sounds and loud bangs to physical gestures like winking, blinking, and shoulder rolling.

These tics cause him significant distress and currently make him unable to hold down a job, further compounding his struggle to pay for his medicine in a vicious cycle. But he’s able to manage his symptoms with medical marijuana and a vaporizer. 

“It’s something I dreamed of as a kid, taking a small pill and it would just disappear, and now I have it basically. I’m hoping that soon I’ll be able to work and maybe be able to manage it because that’s the only way if it doesn’t become available on the NHS. Every medication that they’ve been able to give me, they’ve made me into basically a zombie. Cannabis is the only thing that controls the tics,” he tells the BBC. 

The Department of Health and Social Care says that medical marijuana could be paid for by the NHS where there was “clear evidence of their quality, safety and effectiveness,” the BBC reports. “It is important to carefully review evidence on unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll-out on the NHS more widely.” 

An NHS spokesperson continued that: “While there is limited evidence on the safety of these unlicensed products, we continue to encourage manufacturers of these products to engage with the UK medicines regulator, which would provide doctors with the confidence to use the products in the same way they use other licensed medicines.”

There are currently over 300,000 kids and adults living with Tourette Syndrome in the U.K.

The post Man with Tourette Syndrome Pleads with NHS To Increase Cannabis Prescriptions appeared first on High Times.

Limited British Study on Cannabis and Chronic Pain to be Launched

April 8, 2022 Published by

After all the delays, obfuscations and denials, the British are finally taking the next obvious step toward a better understanding of the medical efficacy of cannabinoids. Namely, a highly limited medical cannabis trial dubbed Canpain focusing on chronic pain has just been announced. However, so far, despite reports to the contrary in the media, including The London Times, medical regulators have still not formally authorized a wide-spread study of cannabis and pain management.

While a small trial is a good first step, the question remains why this has taken so long to even get going, let alone why the project is so limited.

Canpain is not the first cannabis experiment in the country and is far from the largest. That distinction goes to Project TWENTY21, organized by a non-profit research organization called Drug Science. 

However, Canpain would be, upon proper launch, the first government backed trial which could also lead to patients finally being prescribed medical cannabis via the National Health Service (or NHS).

Its success remains in doubt, however, particularly given what is happening elsewhere in Europe right now. This includes Germany, the largest reimbursed medical cannabis market in the EU, where public health insurers are increasingly turning down applications for medical cannabis authorization on the basis of “just” chronic pain.

What Is Actually About to Happen

The initial “feasibility study” will be conducted by a private cannabis clinic, LVL Health, which will first enroll 100 patients as a first step of the larger experiment (which has not yet even been approved by the NHS). Canpain aims to enroll up to 5,000 adult patients who will receive cartridges with unprocessed cannabis flower on a daily basis for at least one year. 

This will not be completely free. Patients will have to pay about $300 per month to receive capsules embedded into vaping devices. 

What Is New?

The big news here is that NICE — the National Institute for Health and Care Excellence — will, once the feasibility study is reviewed, approved, and launched, examine the data to determine if the clinical evidence justifies the prescription of cannabis for chronic pain. 

In the past, NICE has specifically denied that there was any evidence supporting the use of cannabis to manage chronic pain. According to government data, one in three Britons suffers from this condition—defined as that which creates severe discomfort for more than three months.

By definition, the new Canpain trial in the offing is also admitting that their first limited medical efforts will also exclude most of the chronic pain patients in the country.

In the US, in sharp contrast, the number one reason for medical cannabis use is in fact, chronic pain.

The Slow, Shameful Pace of Cannabis Reform In the UK

Like everywhere else, cannabis reform of even the medical kind has been vigorously fought by British government authorities and agencies, even after medicinal cannabis was technically legalized here in 2018 and a larger medical trial, albeit still limited, was launched in Germany in 2017. Even fewer people have actually gotten prescriptions in the UK than Germany since then via the NHS. Even worse, thanks to the NICE intervention, chronic pain patients were explicitly excluded from receiving reimbursed care post 2018, even if they had managed to obtain such permission previously. Only 18 cannabis prescriptions were subsequently written through the NHS (for whatever reason) and only 259 private prescriptions were issued in 2019.

ProjectTWENTY21 launched in August 2020 with the goal of providing lower cost cannabis to registered patients and studying the same with the goal of providing a large-scale clinical trial that also helped patients obtain cannabis at a lower cost than is available through private medical care. Many cannabis cultivators signed up, at a considerable cost, to be able to provide lower cost cannabis via this trial. About 20,000 patients have subsequently become part of this trial which has now expanded to Australia.

It is not clear why this data has so far been ignored by government authorities.

In the meantime, both further medical and recreational reform debates continue to rage in the UK as the mayor of London, Sadiq Khan, has announced that he will launch a recreational cannabis decriminalization trial in certain parts of London.

Beyond this effort, no British national authority has taken either medical or recreational cannabis reform seriously.

As a result, British, just like other European patients are still mostly left out in the cold and stuck between outrageous monthly costs via private health care, the black market, or going untreated (which is obviously not a viable option for most patients).

The Criminalization of Legitimate Patients Continues

For all the police press releases about tackling drug crime, there is no effort currently underway to track the fates of legitimate patients who are routinely arrested and prosecuted under federal narcotics laws which they are still subject to when their applications for medical treatment are denied (for whatever reason). All of these patients must go somewhere to find another source to obtain cannabis and, when turned down by insurers, this almost always means that such individuals have to turn to illicit sources because they cannot afford private care. 

In Germany right now, insurers are routinely turning down 40% of patient applications — and for a variety of specious reasons including supposed lack of clinical evidence — even when presented with the most recent data, refusing to process complicated forms that even doctors get “wrong” or even denying patients reimbursed care because their healthcare provider sent in forms later than insurance company imposed deadlines. The only reliable way to obtain legitimate medical cannabis in Germany right now is to have enough money to obtain private healthcare or sue one’s public insurer.

Despite all the protests, and data, one thing is clear. There is a long, hard fight still ahead before the cannabis plant is normalized, anywhere.

How many more people have to face criminal charges or even die before that happens?

The post Limited British Study on Cannabis and Chronic Pain to be Launched appeared first on High Times.

Second GW Pharmaceutical Setback Exposes U.K. Health System Flaws

August 28, 2019 Published by

The U.K. medical body charged with determining which treatments can be accessed through the National Health Service (NHS) has dealt a second blow to GW Pharmaceuticals in a matter of days.

Last week, in its findings on the potential for U.K. medical cannabis, NICE  (The National Institute for Health and Care Excellence) ruled GW’s Multiple Sclerosis drug Sativex as not cost effective.

And it has now delivered the same verdict on its epilepsy drug Epidiolex – for the time being, at least.

Another U.K. Anti-Medical Cannabis Ruling

In its announcement NICE went to say that it would continue to work with GW on a number of issues. Epidiolex – comprising of CBD and the anti-seizure drug clobazam – was approved by the FDA last year and has prompted a major sales boost for GW in the U.S.

In the U.S it costs over $30,000 a year for, often young patients, suffering from Dravet and Lennox-Gastaut epilepsy – and it is this cost which is causing problems for the NHS. Needless to say NICE has come under fire for this latest anti-medical cannabis ruling.

Securing NHS Cannabis ‘Seems A Lost Cause’

Former U.K. Drugs Czar Prof David Nutt, now Head of the Centre for Neuropsychopharmacology, said that this decision, and last week’s ruling, mean ‘getting pure extracts of plant cannabis products into the NHS now seems a lost cause’.

In a press release NICE said it would work with GW on the issues it has raised. It said the duration of the clinical trials, at only only 14 weeks, meant the ‘longer-term effectiveness of cannabidiol with clobazam is uncertain’.

It also had concerns about the ‘economic models’ provided by GW saying it excluded some key cost impacts. Its ruling is open to consultation with a final decision due next month. In England, some 600 people with Dravet syndrome and around 4,000 people with Lennox-Gastaut syndrome could benefit.

Ruling Exposes Flaw in U.K Health System

While some see the two decisions as further evidence of U.K. clinical bias against cannabis drugs, it all exposes one of the key flaws of the country’s socialised health care model. NICE generally funds treatments that cost less than £20,000 a year, but baulks at those costing over £30,000.

As well as taking into account the cost of the drug, its deliberations include equipment and time spent administering and managing the treatment. It  aims ‘to make decisions that will improve the health of the whole population’. In the U.S. over 90% of health insurance providers have agreed to list Epidiolex, and as such the U.K. system now seems to undermine the NHS’s founding principle of ‘providing universal care, according to need’.

Meindert Boysen, director of the Centre for Health Technology Evaluation at NICE, accepted the evidence on Epidiolex but went on to say  ‘the committee was not convinced about the way the company had modelled the effect on people living longer or having a better quality of life’.

A spokesman for GW, a U.K. company listed on the NASDAQ, told the Telegraph: “We are working with NICE to address the questions raised in this draft guidance, with the aim of ensuring patients can access the medicine on the NHS once approved. We remain hopeful that NICE will recommend cannabidiol oral solution at the end of its appraisal process.”

The post Second GW Pharmaceutical Setback Exposes U.K. Health System Flaws appeared first on CBD Testers.