Medical advances come at a cost, and that cost is increasingly steep. We rely on pharmaceutical companies, as well as public and philanthropic investment, to develop the medicines that can transform and even save lives. New drugs emerge not according to need, but when companies know they can make sizable profits from them. The problem with this, beyond our intuitive sense of wrongness when people reap lavish rewards thanks to products others cannot live without, is twofold. Some diseases or conditions – particularly those prevalent in poorer countries – are ignored, while treatment for other health problems may come at a heavy price.

Governments and patients around the world are struggling to cope with escalating costs. Last year a report suggested that the average annual price of new cancer drugs had almost doubled in the US between 2013 and 2017 – and would double again by 2022. Companies blame the cost of development and say they need to recoup their investment before rivals are able to pile in with generic competitors. They are less keen to acknowledge their often sky-high profits, the fact that some put more into share buy-backs than research and development, and the reality that many new offerings are “me-too” variations rather than game-changing innovations. Patients and shareholders are likely to draw the line that distinguishes a fair reward from greedy profiteering in very different places.

The problem is especially acute for drugs that do not have a large market – either because the aim is to use them only as a last resort to preserve their efficacy; or because the disease or condition is an uncommon one. Last month, the health secretary, Matt Hancock, proposed incentivising pharmaceutical companies to develop new drugs to tackle anti-microbial resistance by paying for the medicines according to their value to the health service, rather than by the quantity used. It is a welcome step, though international cooperation will be needed if it is to have real impact.

Now Mr Hancock is being asked to show boldness in another case. A US manufacturer has set the price of a drug called Orkambi, which could extend the lives of thousands of children with cystic fibrosis, at more than £100,000 a year. Britain is home to more than a tenth of the 100,000 people worldwide affected by the life-limiting genetic disorder. But the NHS cannot afford Orkambi: the National Institute for Health and Care Excellence (Nice) says it is simply so expensive that it is not cost effective. Other companies have budged in similar circumstances; but the drug’s maker, Vertex, refuses to do so. It rejected an offer of £500m over five years for access to its cystic fibrosis drugs as inadequate and unfair; it is understood to have spent $3.3bn on the patents for the drug, though campaigners say it has already earned $2.5bn from sales. The head of specialised commissioning for NHS England has described the company as “an extreme outlier in terms of both its pricing and behaviour”.

As the Guardian reveals today, parents and the medicines group Just Treatment are urging the government to invoke “crown use”, allowing it to make cheap versions and pay Vertex a smaller sum in compensation. This would be very unusual, but not unprecedented. The principle that intellectual property rules cannot automatically outweigh health considerations is well established, and not only in public opinion; it is recognised in the WTO’s Doha declaration of 2001. Mr Hancock should heed the campaigners’ call. The hopes raised by this powerful drug should not be dashed. If crown use sent a broader message on acceptable pricing, all the better.