From Campaigns to Change: How Patients Can Influence Policy
Every major shift in healthcare has one thing in common: patients refused to stay silent.
by Leila Simpson, United Patients Alliance
Patients have already shaped history by refusing to accept limitations, speaking out on behalf of themselves and others, gathering allies and building enough momentum to turn the tide of conventional medicine. With more than half of patients who responded to UPA’s recent survey reporting they are dissatisfied with their experience of the legal medical cannabis industry in the UK, is the same groundswell needed now to rebuild an industry that serves patients and alleviates suffering?
Lessons from history
Thalidomide horror
In the late 1950s in the UK and Germany, a drug called thalidomide was prescribed to pregnant women for morning sickness, causing thousands of severe birth defects. Survivors and their families fought for decades against manufacturers and governments that denied responsibility. Through relentless campaigning, they won compensation settlements and drove the introduction of stricter drug safety regulations worldwide. Their story shows how patient persistence can reshape global medical standards.
HIV/AIDS revolt
The Oscar-winning film, Dallas Buyers Club, tells the true story of the HIV/AIDS crisis during the 1980-90s in the US, where patients were dying whilst the government stalled on approving life-saving drugs. Multiple grassroots patient advocacy movements were established with the aim of patients taking control of the situation. They collectively imported experimental treatments illegally, distributed them within patient networks, and lobbied the FDA. Their activism forced regulators to create faster approval pathways and include patients on advisory boards — fundamentally changing how drugs are trialled and accessed.
Orkambi win
In the UK, patients, parents and allies led a nationwide campaign in the 2010s to access Orkambi, a life-extending drug for cystic fibrosis. NHS England initially rejected it as “too expensive,” leaving patients without treatment. Families launched petitions, protests outside Parliament, and extensive media campaigns and in 2019, after years of pressure, the NHS struck a deal with the manufacturer and started providing it…
Collective voices can shift conversations. Conversations can shift policy. Policy can save lives.
Collective voices are built from individuals who speak up.
What these campaigns teach us
Patients are experts in their own health
Firstly, patients are experts. Their constant lived experience of their condition and all the interventions they have made build knowledge that is far deeper than a medical professional, who brings valuable insight but just can never know as much as the patient who lives it every day. Each patient is a professor studying their specialism, their own health. And patients with similar specialisms (diagnoses) are comparing notes all the time, so the knowledge is ever-growing.
Collective voices > individual struggles
Being a patient is an isolating experience. With western medicine’s tendency to reduce people to their bodily processes, you may also be physically isolated from others due to some part of your condition. It is a dehumanising experience and it is easy to slip into ‘doctor-knows-best’ mentality. But the wins of the campaigns above would not have happened if patients hadn’t shared their stories, realising that their experience had, in fact, been a shared one, and power comes often in numbers.
Storytelling as power
The stories of Alfie Dingley and Billie Caldwell forced the UK government to face the real human cost of prohibition on medical cannabis in 2018. Facing outcry in the media and public, the government changed its position, allowing the prescription of medical cannabis and leading to the industry you see today, with tens of thousands of patients now legally accessing life-transforming medicine.
Stories are powerful, and stories of needless suffering moreso. Every medical cannabis patient has a story of overcoming hardship, finding medicine that works and gives them back quality of life, and, in the case of the UPA team, giving their time and expertise to advocate for others to reduce suffering. Most patients now have a story about how the legal industry has let them down- as responses to the UPA Patient Survey 2025 indicate.
Where We Are Now in the UK
Despite legalisation in 2018, real access remains restricted. UPA’s recent survey indicates that common issues patients are finding in the industry are the cost of medicine (still too high), the availability of the medicine that is working for them (e.g. sometimes clinics discontinue strains at short notice), the responsiveness of the clinics (or we should say lack thereof), and the quality of the medicine itself, with 15% of respondents reporting they have been sent unconsumable/unsafe medicine.
Of course, the lack of NHS prescribing affects a vast amount of patients and many still prefer the services, products or prices available at their black-market dispenser. The legal industry is losing out by providing a lacklustre service for patients, and many patients who have made moves to not be criminalised by consuming their medicine are facing the hidden costs of an industry still finding its feet (see previous article Cannabis Europa 2025: A Wake-Up Call for the Industry).
Should we rely on the industry or government for change?
Patient advocacy has existed for ‘medical cannabis’ patients of all diagnoses in the UK since Clark French stuck his head above the parapet, speaking out about his journey with MS (see ‘Grassroots: The Cannabis Revolution’ documentary) and founding the precursor to UPA. Since then, UPA and other patient groups have collected stories and data, amplified patient voices, educated countless stakeholders and the general public and ultimately have used their broken bodies to open the door to, and prop up an industry which is ultimately rarely serving their best interests.
You only have to hear Julie’s recent public request to the cannabis industry to support the campaign to stop changes to PIP (i.e. cuts to government disability payments) to see this in action. It would be nice if companies cared because their ‘consumer base’ are suffering humans and many are under threat of having help taken away from them. But changes to PIP means patients will have less money, which directly affects the financial baseline of these companies. That’s surely what they care about, and that’s where the ‘campaign ask’ is targeted. Whatever happened to humanity, or at least to CSR? Even so, I haven’t heard of a single medical cannabis company supporting the PIP campaign yet. I hope they are, but I’m sure some are planning to squeeze what they can, then jump ship to a different industry, just as they jumped into cannabis, leaving patients with cut payments struggling.
The government is also currently doing a major reassessment of Cannabis‑Based Products for Medicinal Use (CBPMs), covering the period since the 2018 rescheduling - nearly seven years - timed explicitly to reassess the law’s effectiveness and inform future policy decisions.
We should be Organising. Patients, clinicians, clinics, prescribers, manufacturers, lawyers - anyone who has a stake, to ensure an industry develops that actually helps people. But who is investing in this? I can’t see anyone organising the industry around this.
Power to the Patients
It’s time to take back power.
If you’re reading this, you are likely a patient, or an ally. You can have your voice heard, or champion other voices to tell stories and make change. You can join our collaborative effort to build an industry that rewards and responds to patients sharing their experience.
Visit https://www.unitedpatientsalliance.org/get-involved to see how you can join us. Most UPA team members are patients and the shared experience of advocacy is humanising and rewarding. We are also reaching out to other patient advocacy groups in the space with the aim of collaborating and building our collective base.
Change doesn’t happen for patients, it happens because of patients.
We are Organising.
Join us.
