Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 46-59)

MS LISA POWER, DR MAX SESAY AND MS DEBORAH JACK

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 exist—and 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 health—are 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 services—that is the whole issue of the exacerbation of a stigma around HIV—and 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 support—and 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 done—particularly, thinking of your booklet on clinical trials—is 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 these—and 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 unemployed—they 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 be refused.

  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 ongoing—I am sorry, this is harking back to the earlier session—around the implementation of the White Paper in order to ensure that PCTs take the issue sufficiently carefully. But I think it also spills over—


 
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