Examination of Witnesses (Questions 80-99)
DR DAVID
ASBOE, DR
BARRY EVANS,
MS PAM
WARD AND
MR PETER
NIEUWETS
27 JANUARY 2005
Q80 Mr Burns: I do not
want to get into screening because other colleagues of mine, I
know, will be raising that. I do not want to get into emigration
either because that is a slightly different issue as well. I am
asking if you have evidence of any other developed country in
the world where, if one turned up inside their borders, on holiday
or whatever, and then presented oneself at a hospital and it was
diagnosed that you had HIV or a number of other conditions, one
would be able to get free treatment.
Dr Evans: I am not aware of that,
but I would not be expected to know, quite honestly. I do not
know what other countries' policies are on that.
Q81 Mr Bradley: Peter,
we have heard some evidence on costings. What is the up-to-date
cost of HIV treatment? How does that compare with someone falling
ill and using emergency services? How does that compare with an
attempt to prevent someone having further infections?
Mr Nieuwets: There are a few answers
and a few things I cannot answer. First of all, combination therapy
costs approximately £7,000. But that is just the combination
therapy, that is not the sum on-cost, because most of the time
on-cost for a patient is £12,000 altogether. That is what
a patient approximately costs. If you can prevent that—and
prevention, it is said, could cost up to a few pounds—if
you look at what a PCT spends on prevention on HIV and what it
spends on the actual cost of treatment, those two have no relationship
to one another. One PCT could spend up to £3 million on treatment,
and very little on prevention because HIV does not have a star
rating. Teenage pregnancy has. They will try to prevent teenage
pregnancy, but not HIV because it is not seen as important. On
the other side, in some PCTs they still say—and sometimes
I am surprised—"We don't have any gay men, we don't
have any black people" and then you have to say to a director
of public health, but the SOFIT data proves you have.
Q82 Mr Bradley: With the
emergency services—
Mr Nieuwets: I do not know exact
costs on that, but if people come in through A&E they are
much more expensive because it is also the time and everything
being spent on them and they become an in-patient. It is very
clear if people also have HIV and, for instance, they are dying
of HIV. It was estimated a few years ago from Dr Beck that it
costs up to £50,000 to £60,000 a year for somebody dying
of HIV, not everything else, because somebody just does not die,
it takes a long time. That is one of the problems that also some
of my other colleagues put forward. It is, like, if you cannot
treat, people will get ill and will need lots of A&E treatment,
which is expensive, and then leave and will turn up after months
again. One of the problems is often that people will shop around
because they will be fearful to go to the same hospital because
hospitals, lots of them, have administrators with good memories.
If a name comes up, they say, "This patient hasn't paid their
bill last time." Then you get into the issue of: Is it treatment
or is it payment? What is the most important: to treat or to pay?
Some people are very wary about that. They say, "But if I
don't pay, they don't treat." It is also an enormous amount
of tension within hospitals between administration and medical
staff: Treatment or payment? Who has the loudest voice within
the hospital? And it creates an enormous amount of problems for
a community. According to the strategies, we are working against
social exclusion, we are targeting vulnerable groups. The effect
of this, in a way, is that we are targeting vulnerable groups
but socially excluding them, not including them, and financially
this has enormous problems. If you look at the numbers, numbers
of HIV go up by 20-25% across the country. The costs, what PCTs
get, go up by 10%, so the pressure on the services is growing,
and a PCT says, "We don't have money," "Yes, they
have money," says the Government. "It is in the baseline."
But the baseline is based on SOFIT data of 2001 and has not changed.
So there is a problem there.
Q83 Chairman: Mr Nieuwets,
you mentioned tensions between doctors and managers in this whole
area. Dr Asboe, without being specific about Chelsea and Westminster,
would you concur with that picture? Is it one that you pick up
from your colleagues elsewhere?
Dr Asboe: I think in many areas
there is a conflict. First of all, the criteria on which patients'
eligibility is assessed are complex and difficult. In many situations,
you are asking clinicians at the coalface, you know, at the point
of entry, when patients are being tested, to make that assessment,
an assessment that is difficult. Patients are often very traumatised
in that setting and clinicians are not trained to make that assessment.
It also puts them in conflict with their primary role. Making
the basic assessment at that level can be very difficult. There
is also a situation where patients may not be eligible for treatment,
and it is not only that they are not eligible but the guidance
is that if treatment is deemed to be necessary in order to save
life or to prevent a life-threatening illness, then treatment
must be offered immediately. But you may have one commissioner
in one hospital who takes a criterion of a CD4 count of under
200—so a patient is very immune compromised, but not at
this very point in time having a life-threatening illness—who
will make the decision that treatment is warranted under those
circumstances and you may have a clinician in a different hospital
or on a different day who makes a different assessment. Then there
is not only conflict between clinicians because the criteria are
not very clear but you have conflict between the clinicians and
the management, either of the trust or, at a higher level, the
PCT level. So I think this conflict often is difficult and will
be more severe in different trusts.
Q84 Chairman: If a patient
is being treated for a range of conditions and certain of those
conditions are free and certain chargeable, what impact does that
have on you as a doctor treating these people? Who actually works
out how much is free and how much is chargeable?
Dr Asboe: That is very true. I
work in the sexual health service as well and so obviously patients
coming into that service, the sexual health or the STI component
of it, excluding HIV, is completely covered. Okay. But as part
of that service we are offering testing to everyone, and a proportion
of those patients will test HIV positive. Then you have to turn
round and say, "Well, we can treat your syphilis but we cannot
treat your HIV." I think it comes back to the whole point:
in a way—
Q85 Chairman: Could I
just intervene. You can treat it but it would be chargeable.
Dr Asboe: It would be charged
for.
Q86 Chairman: How do you
work out the proportion which is chargeable where surely there
is an overlap between the treatment of the conditions?
Dr Asboe: The treatment of HIV
is very specific. You have combination antiretroviral therapy
which is specifically for that condition. The only overlap with
those drugs is the treatment of hepatitis B, and sometimes that
is an issue. Some patients may be able to have their hepatitis
B treated but not their HIV. In terms of their other sexually
transmitted infections, actually the treatments are quite disparate
and separate but obviously they can occur in the same person.
Q87 Dr Naysmith: You are
acting as a kind of gatekeeper in this situation, are you not?
You are deciding who has to pay and who has not. Is that a role
that you are happy with?
Dr Asboe: Absolutely not. It is
very clear that the General Medical Council says in the duties
of the doctor, the very first one, that you must make the primary
care of the patient your first concern. You must work with your
colleagues to ensure that the patient's best interests are served
and that is in direct conflict with some of these decisions that
are needing to be made. You may say you can refer them to the
overseas officer, but, in fact, where is the clarity about who
gets referred, how they are assessed and how often they are assessed?
So there is major conflict.
Q88 Dr Naysmith: You must
know that sometimes you are denying treatment to patients who
do not have the money to pay.
Dr Asboe: In practice, if we had
a patient attending our service about whom we felt, from our assessment
and in conjunction with the overseas officers within the hospital,
there were questions about their eligibility, we would refer them
onwards to see specialist legal advice, usually from the Terrence
Higgins Trust.
Q89 Dr Naysmith: Does
that cause you any other problems apart from the sort of ethical
one?
Dr Asboe: I think it is a problem
for the patients. It may have been difficult for them to attend
the service, they need to go outside the service to get this legal
advice, and then often they are lost to follow-up because they
never actually make it back into the service, they become part
of the hidden population who are a threat with all the problems
that HIV can lead to.
Q90 Chairman: In reality,
again without asking you to comment about your own position, would
it be fair to expect perhaps rather a lot of medical colleagues
in your circumstances to turn a blind eye to requirements on charging
and carry on treating? Is that not a reasonable assumption to
make?
Dr Asboe: I am sure that happens.
That is because, in talking to my colleagues, we feel that is
our duty as a care giver. We know that may put us in trouble with
the trust, but, equally, the converse of that is that if you withhold
treatment you may be in conflict with your duty as a care giver.
Q91 Dr Taylor: The impression
is that it is unenforceable. You have said one is allowed to use
treatment where it is necessary to save life. Is there a sort
of time limit on that?
Dr Asboe: I should say that it
is your duty to use that treatment now to save life. It does not
mean the patients will not then be charged for that treatment.
It is not that it is free, but the circumstances in which you
would invoke that and just get on and treat the patient—and
then obviously trusts will have a variety of different views about
whether they will chase the person for the money, how hard they
will be chased, and where the patient stands on this, in terms
of having been diagnosed with a life-threatening illness and being
chased by debt collectors and the like. But I do not mean to give
the impression that treatment under those circumstances is free.
Q92 Dr Taylor: Thank you
for clearing that up. You have mentioned also that you refer things
to the Terrence Higgins Trust for legal advice. Do you delay treatment
while you get the advice, or do you treat and then go for the
advice?
Dr Asboe: Again, I think you would
make a clinical assessment and if you felt treatment was immediately
necessary, either for the person or, quite often, as we have heard—
Q93 Dr Taylor: Public
health.
Dr Asboe: Or in order to prevent
vertical transmission—so if a pregnant woman came in we
would get on and do that and then ask the questions later, of
course.
Q94 Dr Taylor: What would
you ask for legal advice about? Would it be simply: "Can
I treat this patient?"
Dr Asboe: We may have got a decision
from the hospital side of things that this patient is or is not
eligible for treatment, but I think it is very important that
a different organisation, perhaps who will act in an advocacy
role, also will—
Q95 Dr Taylor: When would
you get that decision from the hospital, from the trust?
Dr Asboe: If a patient comes in
for HIV testing, let's say in a sexual health clinic, if it is
thought that eligibility may be a problem, that would be discussed
with the individual presenting for testing before they go ahead
and have the test. They then proceed with the test and the result
comes back positive. Then again it will be discussed. We will
discuss it with the hospital overseas officer to get their view,
and then, if it is a problem and there is no urgent medical problem,
we would refer the patient to the Terrence Higgins Trust, first
to clarify whether that was Terrence Higgins' view or whether
there was a discrepancy there, and then obviously they would advise
the individual about what their different options were.
Q96 Dr Taylor: Could you
clarify the position when there is no urgency.
Dr Asboe: That is a clinical decision.
Q97 Dr Taylor: Does that
go on the protection of other people from the spread?
Dr Asboe: No. Generally that would
be an individual clinical decision about that person as an individual.
Q98 Dr Taylor: So it is
an absolute minefield for you to work through.
Dr Asboe: It is a minefield.
Q99 Dr Taylor: Could I
go back a little bit to Peter. We are told that government targets
are aimed at reducing newly acquired HIV infections; they are
aimed at reducing undiagnosed HIV infections. What effect will
these changes have on those targets?
Mr Nieuwets: They become very
difficult. Several people said when those targets came out, "We
might achieve them if you build a very big wall around England—a
very big one which no one can get through, neither getting in
nor out." Then it might be achievable. But if it is an open
country, it is unachievable—even probably within the country
it would have been very difficult. Especially one of the factors
now is that people go underground: you do not even know any more
how big your undiagnosed group is. One of the other problems with
the effect of these regulations is that with lots of partnership
arrangements within community care, between people from the black
African community and organisations, HIV organisations and other
organisations, the trust within those very fragile structures
is also falling away, so people do not trust each other any more.
They do not trust medics, they do not trust PCTs, and everybody
asks: "Who is doing what?" The chance of offering good
community care is even going down the drain with this, so it becomes
very difficult even to keep that on a level, especially then,
over time, if money gets less and less. Because all the money
is pumped into combination therapy and PCTs understand lots of
times that money has to be paid to treatment. Community care is
really the stepchild of this. It is like nobody is really bothered
about this: "That is not really necessary." If you ask
clinicians what is the most important thing about treatment, it
is adherence. Good adherence is lots of times helped by good community
care. If there is no community care, the adherence will drop and
you will have even bigger problems, and financially it becomes
a bigger problem. One of the issues is also that the way HIV is
funded within PCTs across the country is very different. In some
areas it sits very clearly within specialist services and it is
more or less still ring-fenced. In other areas, it is in the PCT
and has to compete with anything else that is in the PCT while
it still officially sits in the specialist services' list. But
decisions are made within PCTs and they are given power so they
can do that.
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