The Government has announced that it has approved “top-up” payments by
patients for cancer drugs not available on the NHS. Cause for celebration,
then, after long campaigns by patients and voluntary organisations.
Or is it? If news reports have created the impression that we should hang out
the flags because NHS cancer patients in England and Wales are now allowed
to spend thousands of pounds of their own money on cancer drugs, do we run
the risk of missing the real lesson of this story - that no NHS patient
should ever have to pay for a cancer drug?
This is a point that even the Government has acknowledged, but some health
organisations believe that we are in danger of letting the Government off
the hook on the improvements in NHS drug supply that should benefit us all.
Let's stand back and try to make sense of the story. For months now we've
heard of horrible injustices when it comes to cancer patients. In September
we were told of Diane Winston, 53, a Hampshire woman with advanced kidney
cancer, who started having to pay her local NHS hospital for all the care
she received there, including scans and appointments. The reason? She chose
to pay for an experimental drug called Nexavar, which has not yet been made
available on the NHS.
Why the NHS wouldn't pay
Behind the story was a poorly understood NHS rule stating that if, during an
illness for which they are receiving NHS care, a patient buys additional
drugs or treatments privately, he or she loses their entitlement to free NHS
care. Any NHS services for that condition thereafter have to be paid for.
It's a ban on “co-payment” and it can be brutal.
The reason for the NHS co-payment ban is historical: if you didn't provide a
disincentive for people to receive private treatment while also receiving
NHS treatment, then there was a theoretical fear that unscrupulous NHS
consultants would be whisking away NHS patients for private cures at every
opportunity. (These rules apply to episodes of illness requiring hospital
care - prescription charges are a different matter.)
Until recently, the rules never really presented a problem. After all, if the
NHS would supply virtually any treatment you needed free, why would you want
to go private? But, in the past 20 years the NHS drugs bill has rocketed,
thanks mainly to a new generation of sophisticated and expensive cancer
drugs designed to prolong life at the later stages of cancer. Some cost as
much as £5,000 a week.
That means that the NHS has had to recon-sider its generosity. To keep within
drug budgets, the Government has been forced to decide which drugs are worth
the money, and which are not. So since 1999 no new drugs are made available
on the NHS without approval from the National Institute for Health and
Clinical Excellence (NICE) - the Government's NHS “rationing body”. The
combination of demand for new drugs that can add valuable months to a cancer
patient's life, with the slowness and rigour of the NICE approval process,
and “co-payment” rule were a recipe for disaster. Something had to give.
What gave is that the Government over-turned the co-payment rule, finally
allowing patients to top-up NHS care with private treatments and not be
penalised. But there are several reasons why, for all its temporary benefits
for a few people, some experts, such as Geoff Martin, of the pressure group
London Health Emergency, are viewing this as bad news.
Here they are:
Why should we pay at all?
With NHS patients now allowed to pay for extra treatment, how rich you are (or
how motivated you are to fund-raise) suddenly becomes an important factor in
how you are treated and how long you live.
This threatens the principle of free equitable treatment on which the NHS was
founded. Geoff Martin points out: “It could turn the clock back to the days
before the NHS when your life chances were decided by your ability to pay.
There is a very real danger that NICE will slow down drug approvals as a
cash-saving measure, knowing that desperate patients and their families will
plunge deep into debt to get the best medicines.”
The huge cost of new cancer treatments to the NHS is frequently raised as a
reason why it cannot possibly fund all of them: the next generation of
drugs, which keep people alive for longer (though sometimes for only weeks),
could eventually cost the NHS £50 billion a year, according to the cancer
specialist Professor Karol Sikora. But this has been questioned by experts.
Lord Crisp, the former chief executive of the NHS, has pointed out that
other countries do better than us, with Germany spending 20 per cent more on
healthcare than we do, and France 15 per cent. Given that the number of
cancer patients facing a “co-payment” dilemma is relatively small (the
latest Department of Health estimate says it is about 4,000 people a year,
compared with 11 million hospital admissions), is there not a case for
simply treating them as exceptions, and paying for the as-yet-unapproved
drugs out of NHS funds, Lord Crisp asks?
The pressure is off the Government Cancer services have improved dramatically
over the past five years because so many patients and cancer charities have
united to force change. But once patients can get what they want by paying
for it, rather than the NHS providing it, will the pressure for NHS
improvements be as great?
This applies particularly to the need for the Government to address urgently a
reform of NICE so that its drug-approval process is much quicker and more
responsive to the desperate needs of people with advanced cancer.
As Ian Beaumont, of the charity Bowel Cancer UK, says: “The bad news is that,
longer term, the concept of ‘separate care' will act as a disincentive for
NICE and primary care trusts to approve future new treatments, including the
69 bowel cancer drugs in the pipeline.”
The fact is that, with the announcement of top-up law relaxation (and, of
course, the election of Barack Obama), the week's real story about cancer
drugs got lost. The Government accepted a report by Mike Richards, the
Department of Health's national cancer director, calling for a raft of
measures to allow patients greater access to life-extending drugs, so that
“top-ups” would never have to paid. In particular, it called for NICE to
speed up its approval process and be more open to approving cancer drugs,
even if they extend life by a short period.
This will be a tough task for the Government, and could involve a significant
increase in its drugs budget - an area it has recently targeted for savings.
Millions of pounds for cancer drugs were quietly removed from the NHS drugs
budget last year, according to an analysis by Sir Alex Markham, a former
director of Cancer Research UK, presented at the World Cancer Congress in
August.
In other words, the top-ups issue shouldn't distract attention from the real
issue in hand for the Government, which will benefit us far more.
Do we need protection from drug-makers?
There are no more blockbuster cancer drugs in development by the
pharmaceutical industry. The hundreds of new cancer drugs in the pipeline or
awaiting NICE approval are targeted at small groups of people with
specialised types of cancers. Most of the drugs slow decline in the later
stages of cancer, when time is precious. But the success of their trials,
even when still experimental, is sometimes well publicised.
So do we need protecting from the marketing of drug companies, and from our
own vulnerability to desperate measures when we are ill? In August, NICE
announced that it was not approving new drugs for kidney cancer
(bevacizumab, sorafenib, sunitinib and temsirolimus) because they were not
cost-effective (they can extend life by about six months, and cost up to
£35,000 a year). Andrew Crabb, a kidney cancer patient, said: “We'll have to
sell our house to get it.”
But what happens when the house is gone, the money runs out, the family is
left with nothing and the NHS cannot provide the drug? There's a complex
balance to be achieved in advanced cancer, between length of life and
quality of life, and complex decisions to be made. The principle of allowing
top-ups doesn't make that any easier at all.
So what needs to happen?
Mike Richards, in his new report to the Government, makes clear that drug
companies, the Government and NHS providers all have a responsibility to end
the need for top-ups. Drug companies, he says, need to lower the cost of
cancer drugs made available on the NHS. Government needs to reconsider its
“affordability” criteria on cancer drugs. Doctors should exhaust “all
reasonable avenues” for securing NHS funding before a patient considers
whether to buy additional drugs. And, perhaps most important, for patients
considering selling their homes for a few months more of precious life,
there should be more in-depth discussions between NHS doctors and patients
about the balance between the risk, cost and benefit of every treatment.
That's a lot to do. So let's not get too excited about top-ups. As the experts
Mike Richards and Geoff Martin remind us, they are perhaps a symptom of
failure, rather than success.
Drugs likely to be bought by NHS cancer patients, and cost per month
Drugs likely to be bought by NHS cancer patients, and cost per month
Bevacizumab (Avastin) Bowel or breast cancer, £2,000
Cetuximab (Erbitux) Bowel cancer, £2,800
Lenalidomide (Revlimid) Cancer of the bone marrow, £4,500
Rituximab (Mabthera) Non-Hodgkin's lymphoma, £5,000 per course
Sorafenib (Nexavar) Kidney cancer, £2,000
The patient's story
Clifford Shore, 68, a retired managing director from Worcester had bowel
cancer diagnosed in June.
“A month earlier I had no idea that I was ill,” says Shore.
His oncologist offered two options: he could take the drugs that the NHS
prescribes for the condition, or take the NHS drugs plus the drug Avastin.
“He said Avastin was my best option. It could increase my life expectancy by
50 per cent, perhaps even reverse the situation.” But because Avastin is not
available on the NHS, Mr Shore was told he would have to pay for all his
medication and treatment, including the NHS drugs, consultant fees and blood
tests. This costs between £15,000 and £25,000, depending on their
effectiveness.
Mr Shore needs a cycle of treatment every three weeks. This costs £950 for the
Avastin; and £1,538 for the services normally available on NHS such as
medication, blood tests and consultant fees. Mr Shore is now on his sixth
cycle and has spent about £15,000, raising the money from his savings,
friends and family.
After appearing this week on his local radio station, his primary care trust
said it may reconsider its decision and pay for his treatment. Shore is
cautiously optimistic, and yet finds the UK healthcare situation hard to
fathom. “I've paid into the National Health Service as a high earner for the
past 45 years, yet here I am having to fight for potentially life-saving
treatment,” he says.
Interview by Kate Wighton
