Examination of Witnesses (Questions 46-59)|
27 JANUARY 2005
Q46 Chairman: May I welcome our next
group of witnesses and thank you for your willingness to come
before the Committee. Obviously, we are looking in particular
at the background to HIV charging for overseas visitors. I wonder
if Deborah Jack could give us a brief background to what you believe
to be the main issues and problems with regard to the recent introduction
of charges for HIV treatment.
Ms Jack: First, we would like
to thank the Committee for taking forward our suggestion to look
at charging because we do believe it is a really important issue.
The first point to make, having talked about the Sexual Health
Strategy, is that one of our real concerns about the changes in
the charging regime is that potentially they are going to undermine
what we are trying to achieve for the strategy in terms of encouraging
people to come forward for testing, particularly within the African
community. That is a fundamental point, the interrelationship
between testing and treatment. If treatment is not readily available,
people are going to be reluctant to come forward for testing.
They are going to be unaware of their diagnoses. If they do not
have access to treatment, they are likely to be more infectious;
they are less likely to access advice on how to avoid onward transmission;
and they are also going to be more susceptible to other infections
like TB. There are an awful lot of risks there. Another really
important point that we picked up is that there has been no evidence
of HIV related health tourism which is often quoted. In fact,
the evidence we have, and Lisa Power can talk more about this,
shows quite the reverse is happening. There have been no financial
cost benefit analyses of the impact of introducing charging. The
estimates we have done show that the cost of acute treatment in
A&E if people who are HIV positive become quite seriously
ill is likely to outweigh the ongoing cost of them having treatment.
You have to add to that the potential cost of new infections,
which the Department of Health is saying is anything between £0.5
million and £1 million a year. Obviously there are fairly
significant public health issues but no public health impact assessment
had been done before introducing the changes.
Q47 Chairman: You are saying that there
has been no evaluation by the Government whatsoever of the implications
from the public health perspective?
Ms Jack: No, they have not done
the sums and they have not done a public health evaluation either
of the implications of it.
Q48 Mr Burns: If one divorces it simply
from HIV-AIDS, because that tends to emotionalise the issue, and
talk about health care across the board, why should it be that,
except for those countries around the world where we may have
reciprocal agreements in one shape or form, anyone should receive
free NHS treatment, given that British subjects travelling to
any country in the world where we do not have any reciprocal agreements
would have to pay for their treatment there?
Ms Jack: That is an issue we could
debate for an awful long time. I am worried that what we are looking
at is specifically HIV in the context of this issue.
Ms Power: The simple answer is
that we are responsible for the public health of the UK and not
the public health of those other countries. The arguments for
exempting HIV alongside the other exemptions which already existand
I think the Committee is probably aware that all other STIs and
tuberculosis are exempted from all treatment charging in the UK
for anyone on the ground of public healthare compelling
for HIV to join those other conditions and be treated. We have
the evidence to show you on that. I think we need to take that
on the evidence for the UK because it is our country and these
are our budgets.
Dr Sesay: There are broader social
arguments for that. I think the charging will be targeting the
most vulnerable communities. We are talking about failed asylum
seekers, undocumented migrants and of course people who overstay
as well. We are looking at the consequences of such a policy on,
for example, the spirit of a community based organisation. So
we have to bear the brunt of the people who cannot present at
their statutory servicesthat is the whole issue of the
exacerbation of a stigma around HIVand also to a certain
extent the heightening tensions around racial harmony within society
because the impression or the messages that will be sent will
be of foreigners and African communities being not welcome in
this country. What is even more serious is the issue of late presentation
which is already happening with African communities. I think the
evidence suggests that in fact, far from people flying in to access
the services in the UK, there are actually problems of late presentation,
problems of getting Africans to services, and this is significantly
going to undermine all the efforts that have been made at community
level to try to get people to present at services. Above all,
I think it would have the consequence of driving the infection
underground, and therefore the public health we are talking about
is actually put at risk.
Q49 Mr Burns: If one takes that logically,
do you think that this policy has the effect with regard to race
relations within this country that, rightly or wrongly, there
is a view that people are having to wait longer for their own
health treatment here because of the demands being placed by other
people seeking help who have not contributed at all financially
to the paying of the service or its practices or whatever?
Ms Power: I think the issue is
an important one, and the fact is that we would like to curb the
spread of HIV; otherwise we are going to have far greater problems
with access to HIV and sexual health services in the long run.
We have undertaken research, because nobody else had done it:
we have looked at 60 people who were recent migrants who had approached
the Terrence Higgins Trust or George House Trust for supportand
both of our organisations give basic support to any person with
HIV who approaches us, so their immigration status would not matter
in approaching us. The research showed that 75% of the people
who had recently migrated were not diagnosed until they had been
in the UK for at least nine months, which does not suggest treatment
tourism in the least. Only five per cent of those people had been
diagnosed before entry or immediately upon entry and 58% had only
been diagnosed once they were actively unwell. Once someone is
actively unwell they are more liable to be able to pass on the
virus and they are also harder to treat and more expensive to
treat. I think it is extremely important that we are aware that
we have people in this country who have a condition which is transmittable
and it is more expensive to not treat than to treat. For example,
there was a long-stay visitor in North London who was rushed to
hospital with pneumonia. This is a case that was brought to our
attention at Terrence Higgins Trust. She was diagnosed as HIV-related
and therefore billed after four days for £2,000. Because
of that billing, she discharged herself, went home and self-medicated,
and after several days collapsed and had to be admitted to intensive
care, where her further costs came to £23,000 for that episode
alone. HIV treatment for one year now in the UK is less than £10,000.
The simple fact is that it is cheaper to treat someone for HIV
than it is to allow them continuing revolving-door episodes in
intensive care for which they will run up bills that they cannot
possibly pay and for which the NHS will become responsible.
Q50 Dr Naysmith: As far as HIV treatment
is concerned, is there any evidence for health tourism, meaning
people who come to this country
Ms Power: This is literally the
only survey which has been done, which showed that for one in
20 people there may be some case. We are very clear that we are
not debating the issue of health tourism in general or government
actions around that. We are here to talk about HIV as a public
health issue and a public purse issue.
Q51 Dr Naysmith: Certainly that is the
way we have always treated it. But this is something that is said
and we need to know if there is any evidence you know of.
Ms Power: That is the evidence
we know of.
Q52 Dr Naysmith: I accept you do not
want to promulgate it, but does anybody . . . Deborah? Dr Sesay?
Dr Sesay: No.
Q53 Dr Naysmith: What do you say when
people say that to you?that it happens.
Ms Power: Nobody is debating that
it may happen sometimes, but the only evidence which is provided
on the other side is anecdotal and occasional. This is a matter
which has been supported by the British Association for Sexual
Health and HIV and providers of AIDS care and treatment, who are
the two key bodies of clinicians and managers in the health service
who are working with HIV.
Q54 Mr Bradley: You have already started
to experience some of the evidence in your memorandum regarding
the effects that have been coming through for the changes. Would
you like to elaborate a little bit more on that? Also, have you
any evidence that it is adversely affecting those who are eligible
for NHS treatment as well as those who are not?
Ms Power: Yes, we do have. One
West Midlands' client of the Terrence Higgins Trust was wrongly
billed for treatment. Her asylum case had been refused, but she
was allowed to remain in the country because her country of origin
was too dangerous to return to, and thereupon she was wrongly
billed for treatment. She left treatment and fled the hospital.
When we attempted to negotiate that with the hospital and to discuss
the fact that we believed they were billing her incorrectly, they
passed our details on to a debt collector and we were then required
to cite confidentiality issues because the debt collector began
to try to pursue that person through us. We also talked to a leading
North London hospital in HIV who had reported to us that patients
were increasingly being lost to follow-up because of the fear
of being billed. Our own helpline reported to me yesterday, when
I asked about this, that we have seen a serious increase in the
number of people who are calling, from maybe a couple of people
a week to several people a day, asking about eligibility issues,
because they are afraid, because they fear they may not be able
to go in, and they do not want the shame of being told that they
cannot have treatment unless they pay.
Q55 Mr Bradley: In your memorandum, you
have made some reference to that. Could you supply us with up-to-date
figures on those sorts of inquiries that you are getting?
Ms Power: I can certainly supply
them to you after today. At the moment that is just the communication
I have had verbally with them yesterday.
Q56 Dr Taylor: I think you have made
the case absolutely, utterly, completely. One of the huge arguments
is to persuade people to spend money now to make a saving for
the future. I think the work your Terrence Higgins Trust has doneparticularly,
thinking of your booklet on clinical trialsis absolutely
invaluable. I am rather widening it from just overseas people
coming here because I think that has been answered. It is absolutely
essential that they do not have to pay. I think their surveys
are so valuable that it is worth quoting some of the things out
of theseand it is really going back to the first session:
15% of PCTs do not have consortia arrangements; almost one-third
of PCTs do not include HIV or STIs in their local delivery plans;
some still do not have a designated sexual health lead; 40% of
PCTs have insufficient capacity to make any progress at all. This
is an incredibly useful document with the background in it. Really
I find it hard to ask questions that have not been answered already,
related particularly to African people living in this country.
Could Dr Sesay spell out actual issues that come before some of
the Africans living with HIV here?
Dr Sesay: With African communities
generally we are talking about communities which are already socially
excluded within the United Kingdom context. A lot of them would
be asylum seekers; a lot of them would be unemployedthey
have a high representation in these numbers of the unemployed;
and a lot of them would have been separated from families as well
and they come to this country traumatised as a result of experiences
from where they come. Some of them do not even know how to access
NHS services. It takes quite a while, it takes quite a lot of
work at the community level, in terms of providing information,
in terms of providing direction, and then imagine, when they try
accessing services, what they would encounter is that they will
Q57 Dr Taylor: If they go to a general
practice and if they are registered with one, will they be signposted
in the right direction or may they not even be
Dr Sesay: I think the charging
proposal is going to be extended to primary care, which means
that they may even be finding it extremely difficult to get a
GP at that level. So when we talk in central government planning
around improving our reducing health inequalities within society,
this simply cuts across and drives right into the base of central
government policy of encouraging people to present to services.
Q58 Dr Taylor: So the impact is disastrous.
Dr Sesay: It is completely disastrous.
Q59 Dr Naysmith: I just want to pick
up something that Richard was talking about a little bit earlier,
without in any way disagreeing with the fundamental public health
principle he was promulgating that it benefits us all if people
are not discouraged from seeking treatment. When we were doing
the inquiry a couple of years ago, a lot of people told us that
one of the things that was happening of course was that funding
for HIV/AIDS was being transferred from a special budget to general
funding. That must explain at least some of the results that were
picked up in your survey that Richard was quoting about some PCTs
not spending any money on HIV/AIDS. That should be something that
went through a transition, and maybe when these figures were compiled
it was still moving. Is that the case or are there some PCTs who
do not spend any money in this area at all?
Ms Power: I think it is important
to point out those survey figures are from last year, so they
are extremely up-to-date. That is a brand new publication. I think
there is a real issue ongoingI am sorry, this is harking
back to the earlier sessionaround the implementation of
the White Paper in order to ensure that PCTs take the issue sufficiently
carefully. But I think it also spills over