United Patients Alliance (UPA)
United Patients Alliance are the UK’s first medical cannabis support group, led by patients, for patients. They provide tireless advocacy, compassionate campaigning, and essential education, to safeguard the patients’ voice in advancing legal access to cannabis therapeutics. With over 18,000 active members and supporters, they are the largest patient-led organisation in Europe fighting for sensible reform of cannabis laws that will benefit millions of people.
Why did you start the United Patients Alliance (UPA)?
When I first was diagnosed with multiple sclerosis (MS), I started reading a lot about the different treatments for my symptoms. I came across thousands of stories and several studies about how cannabis could alleviate the symptoms of MS, but as Medical Cannabis was still illegal in the UK, I looked for an organisation to help me. At that time, there was virtually nothing out there for people with chronic conditions like mine. There were some grassroots organisations, and they were very mixed up with the recreational side of things. It was from here that the UPA emerged.
How is the UPA different from the grassroots organisation from where it emerged and what is the mission?
We separated ourselves from the recreational/smoker side of the cannabis industry, not because we necessarily think smoking is wrong, but because for us, cannabis is a medicine and a way to get well, not to get high. I always knew that cannabis as a medicine was a separate issue. I always tried to move the legislative campaign towards the medical side of things, because I knew that it was a stronger argument. To argue that patient should suffer because people enjoy smoking cannabis is ludicrous. It did not make sense to me. So not only did I see this separation as the way that we were going to push the campaign forward and win, but it was necessary to do it for the patients. The UPA is about giving people access to the best quality of life, something that we all deserve.
Why do we need an organisation like the UPA in the UK?
Every nation needs an advocacy organisation that’s going to stand up for the rights of the patients. As we’ve seen in other countries, sometimes when the industry is in control, the patients don’t come first or even second. Sometimes it’s a step by step process, but the patients need to be part of the voice talking to the medical profession. What we need is more politicians working on how to implement the changes so more people can be accessing this medicine. Ultimately, the United Patients Alliance believes that every single person has the potential to be a medical cannabis patient. We all live our lives with the possibility of getting a chronic condition, and we all experience pain.
In your opinion, how is cannabis medicine different from other pharmaceutical drugs?
Every single person should have the option of trying cannabis medicine as the first option and seeing if it works for them. Especially before harmful pharmaceuticals such as the opioids that are readily prescribed for pain. This is the wrong way around. With medicinal cannabis, you cannot overdose, the most dangerous thing that can happen for the vast majority of people is that you fall asleep. When you wake up again, you are probably going to feel quite good. No hangover effect, no terrible side effects, and no potentially lethal overdose like with many other pharmaceuticals like paracetamol and opioids.
What are in your opinion the biggest hurdles to overcome at the minute for patients to get more access to medical cannabis
Right now, the NHS isn’t prescribing very much. Private clinics, on the other hand, are prescribing more. So, it seems right now, the main barrier to access is whether you have money or not. If you have money, you can go see a private specialist, who will write you a prescription for medicinal cannabis. You can walk around medicating with your legal cannabis, and you are fine. Whereas if you don’t have the money to do that you will get it from illegal sources without quality control, and you will criminalise yourself in society by purchasing illicit drugs.
It scares a lot of medical professionals within the NHS to prescribe. None of the Clinical Commissioning Groups are really openly saying they’re going to help patients get access. We also do not have efficient means of production in this country other than GW Pharmaceuticals. I know that for the vast majority of patients, Sativex is not going to be showing the best results. So there are quite a few things to address.
How many people do you estimate will benefit from access to medical cannabis?
The answer is millions and millions. Right now, we know that there’s a report from the home office that estimated that around 4 million people consume cannabis in this country. I think it’s probably more than a million people consuming cannabis for medical purposes. That means that we have a lot of criminal patients in this country. There are hundreds of thousands of patients right now taking matters into their own hands and illegally consuming and possessing cannabis.
I think there’s another barrier to access right now, which is the stigma in the NHS. Once more physicians are willing to prescribe that stigma will slowly start to fade like it already has in the past few years. We came a long way, but we still have many miles to go, and we are not giving up.
How has your organisation been received by doctors and politicians?
Very well, overall. We’ve had cross-party support from all political parties. But sadly we are not a priority, especially with the dreaded Brexit coming up.
I honestly think the only reason the law even changed was that the politicians would look evil if they continued, not giving children access to the medicine they need. They knew that, so they changed the law or tweaked it the tiniest bit, just to allow a small little success and to get the worst cases out on the national news.
What do you see as your biggest contribution to society?
When I was first diagnosed with MS, there was nobody out there to help me. I felt I was battling alone in my little world. There was an alliance to legalise cannabis for everyone, but that was it at the time. Today, if a patient gets diagnosed with MS, there is a place to go. There is a place to get support, and I think we came a long way. But we still have a long way to go.
Despite the victory that there is a place for people to go now, we’re still criminals. Criminalised, marginalised and stigmatised. I’m really pleased to be here at this conference, and it’s great that these things are happening. But at times it just seems a little bit surreal. There are all of these people and investors with money that have a lot in their lives talking about how they can all invest and network and get even more money. But where are the patients? They could do more to include patients as well. We are all here to talk about how they can make money off us. Nobody protects the patients, but this is what the United Patient Alliance is here to do.