Sixteen years ago I first saw the impact of pharmaceutical greed on people living with HIV in Tanzania. In order to maintain their profits, the companies that had developed effective medicines fought hard to prevent the sale of affordable generics. So while those with the condition in the US and Europe were getting lifesaving treatment, only a handful of the millions across Africa who needed it had access.

Fast-forward to 2019, and campaigning has resulted in HIV treatment prices dropping from tens of thousands of pounds a year for each patient to about £50, and millions of people across the global south are alive today thanks to cheap, quality-assured generic medicines. But the problem at the heart of the current model of pharmaceutical innovation has not gone away. It is endangering the lives of patients in the UK and threatening the sustainability of health systems across the rich and poor worlds.

At the moment, innovation is incentivised by the profits drug companies can expect to make during the 20-year monopolies they are granted through patents on the medicines they develop. During that time, they are free to charge whatever price they like, allowing them to recoup their costs, provide funds for future innovation and make a return for shareholders.

That’s the theory. In reality this model is coming in for growing criticism. Too often the medicines that we need the most are not the ones that generate the most profit, so we’re left with little or no private investment in new antibiotics or treatments for diseases affecting the world’s poor. When we do get new medicines, the prices charged increasingly mean the people and health systems that need them cannot afford them, while companies use more of their revenue to buy back their own shares and market their products than they invest in new research. What’s more, the very substantial public funding that underpins the development of most new medicines is forgotten when the most profitable industry in the world sells those innovations back to us.

Labour has an alternative plan. The policy paper it presented at its conference in Brighton, titled Medicines for the Many, sets out the breadth of the dysfunctionality of the current system and proposes a bold set of reforms. It commits the party to using existing but underutilised legal powers to suspend drug companies’ monopolies if they refuse to offer the NHS a fair price. And the party has pledged to apply affordability conditions to the funding the UK government provides for medical research.

The most headline-grabbing commitment was the plan to establish a publicly owned pharmaceutical company able to supply low-cost medicines to the NHS. But the most far-reaching reform – to be explored through feasibility studies and pilots at first – is the introduction of an entirely new innovation incentive model. Known as “delinkage”, it comprises a suite of prize funds and grants that would allow the public to steer research priorities, rewarding the innovation we truly need while keeping drug prices low through generic competition.

Facebook Twitter Pinterest ‘For the last four years patients with cystic fibrosis have been fighting to get access to a treatment called Orkambi that can transform the lives of those living with the condition.’ Lewis Walker with his mother, Christina. Photograph: Martin Godwin/The Guardian

These aren’t abstract debates. For the last four years, patients with cystic fibrosis have been fighting to get access to a treatment called Orkambi, which can transform the lives of those living with the condition. It is one of a new class of medicines that address the underlying causes of cystic fibrosis, not just the symptoms. But the US company that holds the patent, Vertex Pharmaceuticals, is seeking £105,000 a patient a year. The NHS has said that’s too much, and its record offer of £500m over five years has been rejected.

For Luis Walker, a nine-year-old boy from Sussex, this has daily consequences. His cystic fibrosis causes a buildup of mucus on his lungs, requiring daily physio and nebuliser routines that take four hours, causing regular hospital admissions. Luis has been campaigning for years with his mum and thousands of other patients to get access to Orkambi – pleading for a deal that could change his life.

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Simply paying the high price the company is demanding would siphon off valuable resources the underfunded NHS needs and sends a dangerous message to drug companies that holding out for more is a winning strategy. In the face of campaign pressure, the government has accepted its “moral obligation” to explore providing access to the generic version of Orkambi. But it has not acted yet, and the problems we face are much bigger than one medicine – we need a systemic solution.

For the sake of Luis and people like him, I hope Labour delivers on its commitments, and that other parties accept what governments across the world are beginning to recognise – that the status quo is unsustainable and has to change.

• Diarmaid McDonald is lead organiser for the campaign group Just Treatment