Back in 2018, Luis Walker, the then seven-year-old wrote a letter to Theresa May, the prime minister of UK, requesting Orkambi, a drug which delays lung function deterioration and to lower infection risks among patients with cystic fibrosis, to be made available in the country’s National Health Service (NHS). Walker was not alone, along with him, there were more than 1000 letters, all making the same appeal. 

Vertex is the company which holds the licence to market Orkambi in the UK. It has priced a year supply of the drug at £104,000 per patient. The company told the British Broadcasting Corporation (BBC) that a confidential discount was given to NHS England but the amount remained cost intensive. The latter then offers to pay Vertex £500 million over the next five years for other types of drug which Vertex rejected. 

The UK Parliament understood the incident as the “largest ever financial commitment” made by the NHS in its 70 years of history and thought Vertex may have abused its patent position. Presently, negotiations between Vertex and NHS England are still in progress but with little headway. As such, Walker’s mother, Christina, is now putting her hope on a buyers’ club. 

Patients have no option

The buyers’ club met in east London. Over here, patients and their parents are exploring a deal to purchase the generic version of Orkambi, manufactured by Gador based in Argentina. The company charges a year of supply of £23,000 per patient and the buyers’ club hope to gather at least 500 patients, to lower the annual cost to about £18,000 per patient. The club is calling out for patients around the World and in the UK, importing three months’ supply of drugs is still legal. 

This is not the first time AIMed speaks about the patent and generic drug dilemma. Last year, we covered a similar story took place in China, whereby a cancer patient had to make his way to India, to purchase affordable generic drug to manage his condition. The story was also made into a movie “Dying to Survive”. As mentioned in our earlier article, although there are companies setting their eyes on accelerating the pharmaceutical sector with new technology, thus far, no artificial intelligence (AI) has successfully developed any drug. 

The best bet these patients have is a Crown Use or what known as the compulsory licence. In this case, the government will step in to override a patent in the interest of the public and permit replications of a drug to be sold. However, at the moment, Vertex believes the UK government will not be doing so to avoid hindering the company from researching and finding a cure to cystic fibrosis. 

More than resource management 

Although not to the point of unavailability as in the case of Orkambi, shortage of drugs and vaccines continue to pose a challenge to present-day healthcare. One of the most common complaints is the absence of an effective system to respond to a shortage as highlighted by a group of ethicists, cancer specialists and a pharmacist in a survey published this March. In the most stressful situation, rationing will take place and physicians will have to decide which patients need the medication first. 

There are companies which tap onto artificial intelligence (AI) to develop a smart inventory system to keep track of the acquisition, storage and dispersal of drugs so that the institutions are informed immediately when a drug gets expired or when they are in excess. There are also effort to feed the machine learning algorithm with existing drug and chemical data to speed up the discovery of biosimilars, to generate generic or alternative drugs. 

Unfortunately, there remains a gap between what technology can offer to the real World and what technology can actually do in the real World. AI may improve the availability of drugs but it just won’t happen now. 

Author Bio
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Hazel Tang

A science writer with data background and an interest in the current affair, culture, and arts; a no-med from an (almost) all-med family. Follow on Twitter.