Half of all adults suffer from drug shortages and live in fear of running out - but experts say there IS a solution By John Naish Published: 10:25, 27 August 2024 | Updated: 10:25, 27 August 2024 e-mail View comments Three years ago Ray Weaver was diagnosed with Parkinson’s disease – just weeks after taking early retirement from a career in education. It was a cruel blow. The disease is incurable and caused by the loss of nerve cells in the brain, leading to a drop in levels of a chemical called dopamine.
Dopamine regulates the body’s movements and without enough of it, muscles become rigid, causing frequent ‘freezing’, tremors and bradykinesia – or slow movements. Ray, 59, who lives in Aigburth, Liverpool with his wife Angela, 67, told Good Health: ‘My initial symptoms, which began months before the diagnosis, included pains in my right shoulder, then difficulty walking.’ Yet despite the diagnosis, there was some hope that, with the right medication – in this case a drug called ropinirole (which reduces Parkinson’s symptoms by copying the effects of natural dopamine in the brain) – Ray might still have a reasonable quality of life.
‘Initially it worked nicely,’ he says, ‘although it helped that I am relatively young and did not at the time have problems such as tremors.’ Ray Weaver, 59, lives in Aigburth, Liverpool, with his wife Angela, 67 But over the past six months, Ray’s condition has deteriorated. He has lost mobility and strength and worsening muscular stiffness now seriously affects his walking.
‘I get more and more out of control, losing balance and staggering backwards,’ he explains. ‘Negotiating obstacles such as steps are a problem. And if I’m standing still it is difficult to start moving.
’ Yet without his medication Ray knows his health would be declining faster still, and what’s making matters much worse for him is that supplies of ropinirole – the drug he so depends on – have become perilously scarce. Nationwide shortages of the medicine meant that towards the end of last year, he could no longer get the dose that he is prescribed. ‘I can only get 250mcg – whereas I need doses of 750mcg,’ he says.
‘Now I’m having to swallow three times as many pills. That’s a total of 606 tablets every month. ‘Yet Parkinson’s makes it very difficult to swallow, because it affects the muscles in your throat.
Plus, each pill is hard to take out of the blister packs because of my worsening dexterity. It’s very tiring.’ The ropinirole shortage is part of a much wider problem involving a range of prescription medications.
And surveys show these shortages now affect around half of all UK adults. Experts say the problem has numerous causes but the main one is that most generic medicines (cheaper copies of branded drugs, which account for 80 per cent of all medicines prescribed on the NHS) are made in far-flung places across Asia, for instance. That leaves supply chains prone to sudden failures in production and transport.
Ray and Angela have both struggled to get supplies of their medication. Ray, who suffers from Parkinson's disease and takes ropinirole, says: ‘I was always on edge about running out of pills, because if I stop the drug my symptoms intensify and the condition progresses more quickly' Ray’s problems peaked in February, when even the supply of 250mcg ropinirole pills dried up. He was forced to drive around all his local pharmacies to get enough pills to get him through the next few days.
As Ray explains: ‘One chemist would be able to fill, say, a quarter of my prescription, but they’d keep the prescription form (which is standard practice when dispensing medication). So in the same day, I’d have to go back to my GP for another prescription. I could spend three hours just sourcing pills for the next few days.
‘I was always on edge about running out of pills, because if I stop the drug my symptoms intensify and the condition progresses more quickly.’ And he’s not alone, says Rowan Wathes, associate director of policy at Parkinson’s UK: ‘We’ve heard from many people with Parkinson’s who have been forced to make their medication last longer than intended and visit multiple pharmacies to get their vital drugs. ‘Being unable to get hold of a drug you rely on to manage your condition can cause your symptoms to deteriorate, sometimes irreversibly.
It can result in difficulty moving, pain and additional distress and anxiety.’ Mercifully, ropinirole pills are now back on pharmacy shelves – albeit only in 250mcg doses. Meanwhile, pharmacists are complaining of shortages of other vital drugs – including antibiotics, hormone replacement therapy (HRT), as well as medicines for asthma, epilepsy and ADHD.
Chemotherapy drugs and medicines for people with cystic fibrosis have also been squeezed. In July, a survey of more than 1,200 UK chemists found that seven in ten said medicine shortages have put patients at risk in past six months. One area of particular concern is Creon – a drug which mimics an enzyme that’s vital for people who have survived pancreatic cancer, or who have the genetic condition cystic fibrosis, which blocks the pancreas and lungs with mucus.
If patients stop taking Creon, their bodies don’t absorb the crucial vitamins A, D, E and K – and they can become more sick and lose weight. Ray’s wife Angela has also been affected. She has struggled to get hold of a vital drug for her primary biliary cholangitis (PBC), an autoimmune condition that causes progressive liver disease and eventually, liver failure.
In PBC, the bile ducts in the liver become injured and inflamed and are eventually destroyed. Bile accumulates and causes liver damage, which in turn causes bone and joint aches, extreme fatigue and abdominal pains. Read More DR MAX PEMBERTON reveals how to tell if you've REALLY been seen by a qualified doctor Angela, a retired teacher, told Good Health: ‘I have suffered with PBC for more than a decade.
‘The drug in question is azathioprine [a generic drug that was originally made under the brand name, Imuran] which suppresses my immune system. ‘It started becoming difficult to get hold of two years ago. I have to get it from a hospital pharmacy, but shortages mean that I have to go from hospital to hospital to source them.
’ But she can only get 75mg doses – rather than the 25mg dose she is prescribed – so has to cut them up herself at home. Angela says: ‘It’s very difficult. Sometimes I cut a bit too much, sometimes a bit too little.
But it’s my only option. ‘It’s a constant worry. Overdosing can cause ulceration of the throat, fever and infections, as well as bleeding and fatigue.
Fortunately my body seems to have been tolerating the mishaps.’ The Association of the British Pharmaceutical Industry blames manufacturing problems in countries such as China and India, where production can be halted by shortages of raw materials, factory breakdowns and distribution problems. Shortages are also increasing as global demand for drugs grows ever greater, due primarily to a growing worldwide population who are older and living with conditions that need medication.
In January, the European Union announced a system in which its 27 members may stockpile supplies of 200 commonly used medications, such as antibiotics, painkillers and vaccines. But what’s the solution for the UK? Some leading analysts are proposing that Britain re-energises its domestic drug-manufacturing industry, to ensure a steady supply of life- saving medications. Mark Samuels, chief executive of the British Generic Manufacturers Association, says successive governments have failed to promote domestic production of generic medicines.
‘In the past five years approximately £4billion of investment has been put into manufacturing sites in Europe by governments there, while almost nothing has been directed here,’ he says. ‘Our industry is built on high volumes and razor-thin margins which combine to save the NHS billions of pounds annually, but it needs a supportive environment.’ Diederik Stadig, healthcare economist at the Dutch banking giant ING, adds: ‘UK shortages are worsening because profit margins for generic drugs are very low.
So their production is centralised in India and China, where they can be made cheaply in a few factories that produce the lion’s share of the market. ‘The Americans pay more for generics than Europeans. So when production problems arise, they get the drugs first and we get the delays.
’ The solution, he says, is to restore manufacturing capacity in the UK and Europe. It may mean paying more, but that’s ‘a price we will have to accept’. ‘The UK has a tremendous amount of pharmaceutical expertise in its drug companies,’ says Mr Stadig.
‘You would think that with all that ability, Britons could make more generic drugs with relative ease. It is frankly surprising that they don’t.’ Carl Heneghan, a professor of evidence-based medicine at the University of Oxford and author of two papers on drug-shortage problems last year in the British Journal of Clinical Pharmacology, agrees.
‘The revival of a drug-making industry in the UK as a way of improving resilience is essential to solve the problem. It’s odd no one has yet twigged this is the only solution for the shortages. ‘We have the technology and manufacturing ability to build new factories with government support that would ensure that we have adequate supplies of quality-assured generic medicines that we could also sell at a profit into the world markets,’ he says.
‘This issue should be the first thing the new Commons health select committee should be lobbying ministers about when it reforms for the new Parliament.’ Indeed, unless something is done soon it looks likely that UK patients’ problems will only worsen. As a report by analysts at the Nuffield Trust in May said, there are now more than double the number of notifications by drugs companies warning of impending shortages than there were three years ago.
A spokesperson for the Department of Health and Social Care said: ‘Medicine supply chains are complex, global and highly regulated. Supply disruption is an issue which affects the UK, as well as other countries around the world. ‘Our priority is to ensure patients continue to get the treatments they need.
Where there are supply issues, we work with industry, the NHS and others to ensure patients continue to have access to an alternative treatment until their usual product is back in stock.’ DAILY MAIL CAMPAIGN: Petition to halt chemist closures Drugs shortages are placing unprecedented pressure on our local chemists. Evidence compiled by Community Pharmacy England in May found that 94 per cent of its members are spending more time than ever trying to source scarce medicines for desperate patients.
The crisis is putting even more pressure on chemists, which are already closing down at a fast rate. An analysis by the National Pharmacy Association (NPA) earlier this month showed that more than 1,500 pharmacies have closed in England since 2015. Workload has drastically increased in recent years, with community pharmacies dispensing 56 per cent more prescriptions now than in 2006.
But the trade body warns the soaring cost of medicine, combined with 40 per cent cuts to budgets, is leaving many community pharmacies unviable. Since last year, the Mail’s Save Our Local Pharmacies campaign has highlighted how a crisis in funding has forced the closure of thousands of pharmacies, with many more set to follow. Our campaign petition, in collaboration with the NPA, has collected more than 300,000 signatures to demand ‘immediate, fair and sustained funding, to safeguard NHS pharmacy services and ensure local pharmacies have a future’.
It comes ahead of a national day of action on September 19, where pharmacies across the country will ring bells in the morning to signify their peril. saveourpharmacies.co.
uk Share or comment on this article: Half of all adults suffer from drug shortages and live in fear of running out - but experts say there IS a solution e-mail Add comment.
