[Ip-health] Do medication top-up fees mean the end of the NHS?

[Joana Ramos]

http://www.timesonline.co.uk/tol/life_and_style/health/article5106788.ece

Do medication top-up fees mean the end of the NHS?
We examine what the new regulations on paying for drugs means for patients

Simon Crompton
The Times
November 8, 2008

The Government has announced that it has approved =93top-up=94 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 =93co-payment=94 and it can b=
e
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 =A35,000 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 =93rationing body=94. 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 =93co-payment=94 rule were a recip=
e
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: =93It 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.=94

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 =A350 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
=93co-payment=94 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: =93The bad news is
that, longer term, the concept of =91separate 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.=94

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 =93top-ups=94 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 =A335,000 a year). Andrew Crabb, a kidney cancer patient, said:
=93We'll have to sell our house to get it.=94

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 =93affordability=94 criteria on cancer
drugs. Doctors should exhaust =93all reasonable avenues=94 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, =A32,000

Cetuximab (Erbitux) Bowel cancer, =A32,800

Lenalidomide (Revlimid) Cancer of the bone marrow, =A34,500

Rituximab (Mabthera) Non-Hodgkin's lymphoma, =A35,000 per course

Sorafenib (Nexavar) Kidney cancer, =A32,000

The patient's story

Clifford Shore, 68, a retired managing director from Worcester had bowel
cancer diagnosed in June.

=93A month earlier I had no idea that I was ill,=94 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. =93He said Avastin was my best option. It could increase my life
expectancy by 50 per cent, perhaps even reverse the situation.=94 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 =A315,000 and
=A325,000, depending on their effectiveness.

Mr Shore needs a cycle of treatment every three weeks. This costs =A3950
for the Avastin; and =A31,538 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 =A315,000, 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. =93I'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,=94 he says.

Interview by Kate Wighton

----------------
Joana Ramos, MSW
Cancer Resources & Advocacy
Seattle WA USA
+1-206-229-2420
http://ramoslink.info/
www.bmtbasics.org