In the last few days I have had some close connection to the health service in Wales. Welsh NHS as it calls itself, is under tremendous pressures. The response times are appalling. The banal nature of phone triage has caught me out on two occasions in the last month.
The first time was when NHS111 advised me to ring a GP surgery when the problem needed quick hospital assessment for a post natal problem, which turned out to be an infection needed immediate antibiotics. The second was for a lady who collapsed and needed full assessment to exclude serious conditions, but there was no transport for 4 hours. Both these patients were taken to hospital by relatives. They were lucky to have transportation. Delays in either case could have led to serious problems.
I have been told stories of GPs who have decided it is better to ask a lay person to ring the ambulance in any situation. This is because the services are so stretched that the telephone operators are advised to assume that a GP surgery is a safe place to be. The fact that GPs are never exposed to emergencies, and that emergencies are outside their contract ( and their competency in many cases ) does not occur to them.
The result of all this, all over the country, is that private services will take hold, and flourish. The health divide will get larger. The access to services (especially emergency ones) is getting worse, and worse, and worse….. and its going to get even worse. Don’t live in the wrong area.
Access is the most important point, and even this is failing.
This is the list of what Laura Marston has sacrificed to keep herself alive: Her car, her furniture, her apartment, her retirement fund, her dog.
At 36 years old, she has already sold all of her possessions twice to afford the insulin her body needs every day.
Insulin is not like other drugs. It’s a natural hormone that controls our blood sugar levels – too high causes vision loss, confusion, nausea, and eventually, organ failure; too low leads to heart irregularities, mood swings, seizures, loss of consciousness.
For most of us, our bodies produce insulin naturally. But for Type 1 (T1) diabetics like Ms Marston, insulin comes in clear glass vials, handed over the pharmacy counter each month – if they can afford it.
One vial of the insulin Ms Marston uses now costs $275 (£210) without health insurance.
In 1923, the discoverers of insulin sold its patent for $1, hoping the low price would keep the essential treatment available to everyone who needed it.
Now, retail prices in the US are around the $300 range for all insulins from the three major brands that control the market.
Even accounting for inflation, that’s a price increase of over 1,000%.
Stories of Americans rationing insulin – and dying for it – have been making national headlines.
The most famous case, perhaps, was 26-year-old Alec Smith, who died in 2017 less than a month after he aged out of his mother’s health insurance plan. Despite working full-time making more than minimum wage, he could not afford to buy new insurance or pay the $1,000 a month for insulin without it.
Ms Marston knows the feeling – like most of the diabetics I spoke to, she has experienced frightening lapses in coverage through no fault of her own.
A few years ago, when the small law firm Ms Marston worked for abruptly closed, she found herself without an income and suddenly uninsured.
“I was spending $2,880 a month just to keep myself alive – that was more than I was making even working 50 hours a week,” says Ms Marston.
She was forced to leave her home in Richmond, Virginia, to find a new job in Washington DC to ensure she could pay for insulin.
“I sold everything, including my car, and had to give up my dog – he was eight and I had to give him away – and move to DC.”
There are any number of reasons why someone might still be uninsured in America – if they don’t qualify for employer-sponsored insurance or lose their job like Ms Marston had, for example, or if they cannot afford to pay for a plan on their own.
Ms Marston was diagnosed with T1 diabetes when she was 14. She laughs when recalling how the price of insulin in 1996 – $25 for one vial – was a shock to her.
Two decades later, Ms Marston still uses the same formula of insulin – Eli Lilly’s Humalog. Even the packaging is the same.
“Nothing about it has changed, except the price has gone up from $21 a vial to $275 a vial.”
It’s the same story for Sanofi’s Apidra and Novo Nordisk’s Novolog.
So who’s to blame?
Most patients point the finger at the pharmaceutical companies, who in turn bring up problems with government regulations and insurance providers.
At the heart of the issue is the complex mystery around who pays what for insulin in the US.
There are five terms essential to this discussion – list price, net price, rebates, co-payments and deductibles.
- List price is set by a pharmaceutical company, and in many cases is what uninsured diabetics pay
- Net price is the actual profit the company receives for a drug
- Rebates are discounts on drugs negotiated for insurance companies
- Co-payments are what an insured person pays for a prescription, out-of-pocket
- Deductibles , which can be as high as $10,000, are what insurance policies say must be paid before the insurer picks up the rest
Insurance companies enlist third-party negotiators, called pharmacy benefit managers, to fix discounts with drug manufacturers that in turn result in smaller co-payment prices for their users. Experts say part of the system’s problem is a lack of transparency around how these rebates are negotiated and how much actually makes its way to patients.
This system also means that insurers end up with different rates for each drug company, so a brand of insulin that has a minimal co-pay under one insurance could cost the full list price under another.
Ms Marston has been tracking insulin list prices for years. By her calculations, for insulin alone, she’ll need close to $7m to live until she’s 70 if she pays out of pocket.
“It’s led to a situation where I decided I couldn’t have kids because I don’t feel financially stable enough,” Ms Marston says.
But drug manufacturers argue that very few people ever face paying list price.
Eli Lilly said in a statement to the BBC that 95% of people using Humalog in the US pay under $100 a month for their prescription, and that of the 600,000 using Humalog, “about 1,600 people without insurance have not utilised the [assistance] benefits we offer”.
Novo Nordisk and Sanofi detailed similar patient assistance programmes in their statements. And several diabetics I spoke to did say that these programmes helped them- if they qualified.
But another advocate, Kristen Daniels, says she was faced with a $2,400 price tag for one month of insulin and because she was technically insured, she couldn’t get assistance.
“I called my insurance, I called the manufacturer, and no one could help me because I hadn’t reached my deductible,” Ms Daniels says.
Pharmaceutical companies have also emphasised that rising list prices did not result in commensurate profits. Eli Lilly’s spokesman says their net price has actually gone down in the last five years; Sanofi’s said their insulin profits are 25% lower in 2019 than 2012.
According to a report by the American Diabetes Association (ADA) and the University of Southern California Center for Health Policy and Economics, between 2007 and 2016, major brand insulin list prices have increased by 252%, while net prices saw less growth at 57%.
And there are cheaper options in the US for some: WalMart insulin, for example, is a re-branded version of a Novo Nordisk formula which retails for around $25 per vial in most states. But the formula is older, less effective, and some, like Ms Marston, are allergic to it.
This is another key issue in the debate around skyrocketing insulin prices. Each formula works differently for each individual. It takes many T1 patients years to feel comfortable managing their dosing with a particular brand.
Several diabetics I spoke to say they have been forced to switch insulins by their insurance plans – even against the recommendation of their physicians – if they wanted to avoid paying the list price for their preferred brand.
The ADA says this “non-medical switching” is more than an inconvenience – it’s potentially dangerous, requiring constant monitoring on the patient’s part and consultations with a physician.
Serious or permanent complications like blindness or kidney disease can arise if a diabetic is put through too many extreme sugar highs and lows.
In America, where insurance coverage goes hand-in-hand with employment and options are limited, many T1 diabetics make sacrifices in other parts of their lives to keep affording insulin – whether that’s staying with a stressful job or switching insulin formulas at the behest of an insurer.
The expression that comes up again and again in the US T1 community is: “We’re hostages”.
How does the UK compare?
T1International is a non-profit advocating for affordable, accessible diabetes care worldwide. Founder Elizabeth Rowley is an American who now lives in the UK.
As a T1 diabetic herself, Ms Rowley has first-hand experience navigating both health systems. She describes the US system as “convoluted”, with profits happening at all levels in between.
“People spend most of their life in fear of losing their insurance, of running out of insulin and the cost going up, or of having to stay in terrible jobs or relationships to ensure they keep their health insurance coverage,” Ms Rowley tells me. “That’s the best case scenario.
“Worst case, folks are rationing insulin which has led to many reported deaths and excruciating complications. People are buying and sharing insulin from people online they have never met, having to choose between buying food, paying rent, or taking their medicine.”
Diabetics in the US pay on average over $210 each month for insulin, according to a T1International 2016 survey , compared to less than $50 in India or nothing at all in some European countries.
“In the UK, I walked into the pharmacy, and with my medical exemption card, picked up my essential medicines. While the NHS is still overpaying for insulin, the cost it pays is miniscule compared to what people in the US must pay.”
Ms Rowley acknowledges these other systems aren’t perfect – but to her, they are still far better for patients.
The medical tourists
Lauren Hyre, 30, an Arizona-based advocate for T1International, knows first hand the fears of accessing insulin in the US system. She’s struggled with it for two-thirds of her life.
Her father passed away when she was nine and his company cut off the family’s health insurance. Before Obamacare, diabetics could be denied insurance , and so Ms Hyre was without coverage for years.
Living in Indiana, a state without expanded health assistance programmes, she also didn’t qualify for any government help.
For years, Ms Hyre depended upon expired vials of insulin from her doctor’s office and making trips to Canada to buy it at an affordable cost.
The first time she bought insulin at a Canadian pharmacy, her mother broke down in tears.
There are dozens of similar stories across the southern border too.
When 27-year-old Emily Mackey heard about a group of diabetics travelling to Tijuana, Mexico, to purchase cheaper insulin, she reached out on Instagram and joined in.
Ms Mackey was already in California for work, and so her tram ride from San Diego to Tijuana, Mexico, cost $5, round-trip.
A six-month supply of insulin set her back $100, a lot lower than the $1,300 cost if purchased through her insurance.
But her relief soon turned to aggravation. Even if she had flown from her home in Philadelphia, buying insulin across the border would have saved her money.
“I was angry that I had to go to Mexico in the first place to get a drug that keeps me alive. I live right next to a [US pharmacy], yet had to travel 3,000 miles to another country to get affordable insulin.”
What are the solutions?
According to the American Diabetes Association (ADA), there are more than seven million diabetics in this country, and around 27% say that affording insulin has impacted their daily life.
Dr William Cefalu, the ADA’s chief scientific, medical and mission officer, says a lack of transparency is at the root of the issue.
“The system is dysfunctional. There are issues at each level, at each stakeholder in the insulin supply chain,” he says. “We can’t point the finger at one particular entity.”
Fixing issues with high deductibles and ensuring any discounts negotiated with insurance companies actually filter down to patients is key, he says.
Competition would be the best way to bring prices down, so why hasn’t that happened yet?
Unlike chemical drugs, which can be simply replicated, insulin is a biological material – made up of proteins synthesised through a cell line that’s unique to each formula.
Novo Nordisk, Eli Lilly and Sanofi’s insulins are all slightly different in this way, and no “generic” or un-branded copy could be made without accessing these companies’ patented materials and processes.
But despite these fundamental differences, insulin has long been classified and regulated like a chemical drug.
In December, the FDA announced that the agency would reclassify insulin as a “biological product” by 2020, in what the FDA commissioner called a “watershed moment for insulin”.
These so-called biologics will then have an easier pathway to approval than before, promoting the development of “products that are biosimilar to, or interchangeable with” existing insulin.
Insulin isn’t the only drug affected by the tangled web of regulations and closed-door industry dynamics, but it is one of the few with life-or-death consequences attached to its price tag.
For Ms Marston, it’s hard to see why insulin was ever treated like other medications.
“It’s a natural hormone that everybody else’s bodies make that ours don’t,” she says. “There should be price caps on it just like everything else that’s required for life: your water bill, your electric bill. Arguably those things are even less required than Humalog.”
As an increasingly vocal Congress continues to hold hearings on drug pricing, pharmaceutical companies are beginning to feel the pressure.
Eli Lilly has announced it would be offering a new “generic” version of Humalog for half the cost. But the $137 price tag for this new generic is still steep – and significantly above what other countries pay for the same insulin.
The cheapest long term way to treat (and eliminate Cystic Fibrosis may be by genetic testing, but in the interim we have a problem: If you had CF would you think health and drugs were rationed, or not? Far better to be honest…. The drug will probably be treated the same as many others: unfunded until near it’s patent expiry, when the price will fall. This is not a good way to treat the drug companies, and this implies that those with means have better treatment options than those without. Negotiations are really about finance at governmental level.
Both sides of the stalled negotiations on the provision of the cystic fibrosis (CF) drug Orkambi (lumacaftor/ivacaftor) accused the other of inflexibility while giving evidence to the Health and Social Care Committee’s inquiry this week.
Vertex Pharmaceuticals has been in dispute with NHS England over the high price the company wants for Orkambi—£105 000 (€123 000; $138 000) per patient per year. There has been mounting frustration from patients over the impasse. The committee received 334 written submissions to the inquiry, mostly from patients.1 After the hearing there was a demonstration by relatives of patients with CF and campaigners in Parliament Square.
Jeff Leiden, chief executive officer of Vertex Pharmaceuticals, told the committee he is meeting the health secretary Matt Hancock on Monday 11 March and would put forward some “new ideas” for getting through the stalemate. He suggested they could discuss a deal similar to that agreed in Scotland, which would see Orkambi supplied to NHS patients at a discount to the list price, pending further discussions about how to measure the drug’s cost effectiveness.
In July 2018, after 12 months of negotiations, NHS England published what they said was a “fair and final offer” of around £500m over five years for all of Vertex’s approved drugs and any that are approved in the future. Vertex rejected the offer and has also withdrawn Symkevi (tezacaftor/ivacaftor), a therapy that was in development, from the approval process.
Leiden told the committee: “It’s not that we won’t take that offer, it’s that we can’t.” He said every other country will want that same offer which amounts to around £10 000 per patient per year and that wouldn’t allow it to develop the next generation of CF drugs.
Leiden said Vertex had done successful deals in 17 countries over Orkambi and that NHS England is being offered the “best price in the world.” In his evidence Leiden criticised the National Institute for Health and Care Excellence’s (NICE) cost effectiveness assessments saying the system was 25 years old and not fit for purpose.
John Stewart, national director of specialised commissioning at NHS England, called Vertex an “extreme outlier” in terms of their behaviour when compared with other pharmaceutical companies. He said all Vertex were interested in was trying to change the NICE appraisal process and had made absolutely no movement on price.
Stewart said they had “overpaid” for Vertex’s other drug Kalydeco (ivacaftor) by £40m a year or £200m over the five years of the contract that has just ended. But he denied that NHS England is trying to “reclaim” that overpayment in their current negotiations over Orkambi.
Leiden faced pointed questions about his salary of $17m a year and the fact that the pharmaceutical company had a turnover of £5.3bn in the five years to the end of 2017 but paid virtually no UK corporation tax. He replied that the company would not pay corporation tax in the UK or the US until it had paid off its operating costs.
Andrew Dillon, chief executive of NICE, acknowledged that Orkambi works but said it was not cost effective. He said NICE had to be consistent with the methodology it uses for all drugs and that Orkambi at around £300 000 per quality adjusted life year was 10 times higher than its threshold. He called on Vertex to demonstrate flexibility.
Caroline Elston, director of the adult CF service at King’s College Hospital NHS Foundation Trust described the delays as “extremely frustrating.” She told the committee that although Orkambi’s effects on lung function are relatively modest it has a large impact on exacerbations and reduces hospitalisations. She said it stabilised patients so kept them well enough to hopefully be able to take advantage of the promising next generation triple therapy drugs in the pipeline.
In her closing comments, the committee’s chair Sarah Wollaston, said: “I hope that in all negotiations all parties will put patients front and centre.”
My own cancer took 3 months to diagnose… and that was over 10 years ago. Rationing has got worse, but you wont know what is unavailable until you need it. Waiting times for important conditions get worse, especially in parts of the UK where prescriptions are free. Too few staff, and poor manpower planning. It is getting worse. NHS waiting times in England hit five year – health.org.uk (Health UK)
Almost a quarter of cancer patients face delays to starting their treatment as NHS figures show the longest waits since records began a decade ago.
The health service has missed its main cancer target for more than a thousand days. The latest data also shows lengthening waits for emergency and routine care, days after NHS chiefs announced plans to scrap the targets that measure them.
In January 76.2 per cent of cancer patients started treatment within two months of a GP referral. The 85 per cent target has not been hit since December 2015. Fran Woodard, of Macmillan Cancer Support, said: “Behind the numbers are real people who tell us how delays cause anxiety for them and their loved ones at a time when they are already trying to deal with the many worries cancer is throwing their way.”
Because the population is ageing and detection rates are improving, the NHS saw 90 per cent more cancer patients in January than in that month in 2010, but the number waiting too long tripled.
Emma Greenwood, of Cancer Research UK, said: “These figures show an NHS under continued strain, with many patients waiting too long to get a diagnosis and start treatment. For anyone going through tests and treatment for cancer it’s an incredibly anxious time, and delays can make that worse. There simply aren’t enough staff.”
This week NHS England set out the most radical overhaul of hospital standards in more than a decade. It included plans, disclosed by The Times, to test replacements for a target that 95 per cent of A&E patients should be admitted or discharged within four hours.
Figures for last month show that only 84.2 per cent of patients were dealt with in four hours, the worst proportion since comparable records began in 2010. The previous low was 84.4 per cent, in January. The target has not been hit since July 2015.
Professor John Appleby, of the Nuffield Trust think tank, said: “We’re in favour of testing the radical overhaul of A&E targets announced by NHS England last week because there is a risk that the current one is driving poor behaviours. But it will be hard for . . . the public to have faith that this isn’t just lowering the bar.”
Six-month waits for surgery are up by a third in a year as hospitals miss a routine care target that is also likely to go. More than four million patients are on waiting lists for surgery and other routine care, with 552,219 waiting more than 18 weeks. The target that 92 per cent should wait less than 18 weeks has not been met since February 2016.
Professor Derek Alderson, president of the Royal College of Surgeons, said: “While we support NHS England’s plans to pilot new targets and measurements that could improve care, changing targets will not solve the underlying challenges our health service faces.”
NHS England said: “Almost a quarter of a million more people have been seen within four hours in A&E this winter compared with last year . . . More people than ever are coming forward, with a quarter of a million more getting checked for cancer this year and thousands more being treated within the two-month target.”
• Thousands of patients “yo-yo” in and out of A&E in their final days. Analysis of NHS data by the charity Marie Curie showed that in 2017 more than 26,000 people went to A&E at least three times in the last 90 days of life. A lack of palliative care and doctors’ reluctance to broach end-of-life care have been blamed. Joan Brooks died last May aged 98 after going to hospital three times in her last month. Her daughter-in-law, Lynn, said: “I called it the yo-yo effect. We knew when we were taking her home that she would be back.”
New Zealand has been ahead of the UK in many ways, for the last 40 years. No fault compensation (ACC) was started in the 1970s, and there are co-payments. Despite all this effort to ensure a sustainable health care system, the legal risk has not been controlled enough. So the new legislation has been introduced. The NZ system was initially based on the UK but they have moved with the times, and necessity. Another public good related to drugs, where NZ limits the choice to the cheapest generic, but still allows citizens to pay the extra if they so wish. (Universal list of medicines). This is what NHSreality calls “overt rationing”.
- Rohan Ameratunga, adult and paediatric immunologist and honorary associate professor1,
- Hilary Klonin, consultant paediatric intensivist2,
- Jenny Vaughan, consultant neurologist34,
- Alan Merry, deputy dean and specialist anaesthetist15,
- Jonathan Cusack, honorary senior lecturer6
Healthcare systems should provide an adequate and effective response to patients who have been unintentionally harmed while receiving care
To improve patient safety we need a greater focus on learning and resolution rather than retribution and blame, recognising the importance of protecting confidential personal reflective practice while encouraging open disclosure and system transparency
In line with the recommendations from the Williams review, England and Wales should have a higher threshold for criminal prosecution in response to deaths that arise despite conscientious efforts to care for patients under difficult circumstances
We urgently need to improve the clinical working environment and resourcing for safe functioning of hospitals
It is expensive to train medics, and the “cost” as shown below, is only a fraction of the real cost. The last estimate I saw was £260,00 in 2016. The market for medics is world wide, made worse by a global shortage and, in the case of the UK, made worse by the universal language of medical science – which is English. With rationing, we have to date given 2 out of 11 applicants places, and the odds have reduced to 1 out of 3! We need them all, and a virtual medical school could supply. Graduate entry is more efficient for the state, and gives males a better opportunity against females, as the men mature later. All this is recorded in NHSreality. ( See links below) The Perverse Incentives for government to apply short term policies, and the universities to generate income before providing the people needed are driving the situation worse. Along with this current doctors are bullied, harassed and overworked. At junior level repeat mistakes are endemic, and if all were recorded as “critical incidents” these doctors would not have time to work. In many countries, especially those from where we import doctors, they are predominantly private and admission is through wealth. These countries have created a caste system in health care, and the best is usually private. The articles below have interesting graphics…..We are already heading there, but it will take a longer term view to turn the juggernaut around.
….The number of British first-degree students training to be doctors in the UK dropped by more than 500 from 2013-14 to 2017-18, while medical schools increased non-EU student numbers by 12%. While UK students pay £9,250 a year for their medical degree, non-EU students can pay up to £35,000 a year. The courses generally take five or six years….
Exeter, Glasgow and UCL medical schools also increased their overseas undergraduate numbers between 2013-14 and 2017-18 while UK student numbers fell at Durham, Liverpool, Edinburgh and Plymouth.
Jessica Ologbon, 20, said she had felt “numb” when she was rejected by four medical schools after achieving 10 A*s at GCSE and four As at A-level….
…He said: “It’s about money, at the end of the day. You would feel that you were losing out to somebody else who was paying their way in with a chequebook, but the universities have to balance their books somehow.”
Mark Britnell The Sunday Times Med Schools – an opportunity to “train the world” and an advert for his new book:
…We are heading for a global workforce crisis in healthcare. It’s estimated that the world will need an extra 18m health workers by 2030 as the population grows and ages. In the short term the UK is in danger of making a bad situation worse.…
…In Britain, frustratingly, there were 20,730 applications to UK medical schools last year but only 6,500 places available. We did not fare much better in nursing: more than 50,000 students applied for 30,000 nurse training posts.
Of course quality is more important that quantity, but we have the opportunity to achieve both. There is a pressing global shortage of health workers, we have a strong NHS brand internationally, we lead the world with our universities and we have some of the best intellectual property — forged over centuries — for education and training at our command.
We should start by putting our own house in order, but, beyond Brexit, we can show the rest of the world that health is wealth. After all, isn’t that what Brexit has asked of us?
What will that be? It won’t be a promise to give the NHS an unspecified level of long-term funding some time. It will have to be immediate service increases and improvements with extra resources, to stem the flood of failure here and now: more money, yes, but more facilities, and more staff, all immediately, and, with costs guaranteed by government, feasible using quick-fix and stop-gap means. It will be quite costly, though the extra amount you can usefully spend in the short term isn’t huge.
But the alternative at that point will be a collapse of the NHS. And the sobering lesson is that had the warning signs been heeded and action taken before things came to this pass, the cost of putting things right would have been far less. The breaking point would have been avoided. Once the collapse has been prevented, we can all look at how we get things sorted permanently. Get ready for the penny to drop.