Talking to the Lords

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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Keith Alcorn, NAM’s Senior Editor, recently testified to the House of Lords Select Committee on HIV and AIDS in the UK. He hopes their Lordships can exert some pressure to revitalise HIV policy after its years on the sidelines.

We all know that the British response to HIV has been left to slide in recent years. Although we have some of the best standards of treatment and care in the world, our record on prevention is unimpressive, to say the least. Indeed, the previous government largely ignored the issue.

Today, politicians – including government ministers – are realising the extent of the mistake.

At the end of 2010, the House of Lords established a Select Committee to investigate the state of the HIV response in the United Kingdom. It was set up at the urging of Lord Fowler, responsible for the ‘tombstone’ HIV prevention campaign of the 1980s, but also for the enlightened and pragmatic way a Conservative government set about dealing with thorny issues such as needle exchanges and talking about sex in public.

Time-limited parliamentary committees like this one don’t scrutinise proposed legislation. Instead, they scrutinise areas of concern and make recommendations to government.

Recommendations from a committee led by a high-profile peer will create attention and influence, especially when getting value for money on health is at the centre of national politics. While some committee reports sink without trace, this one is likely to coincide with intense restructuring in the HIV sector, and in the way that HIV treatment and prevention are organised and funded.

I was invited to give evidence to this Select Committee on how the NHS can best commission and deliver HIV treatment.

Although parliamentary Select Committees often look like the Spanish Inquisition, this Committee was less interested in scoring points and more interested in hearing from a wide range of experts. In particular, the Committee wanted to know where treatment could be delivered most effectively.

At the time of the hearing, it had just been announced that HIV care would stay with a strategic commissioning body, rather than being devolved to individual GP consortia like most other conditions. A national body will have an overview of how HIV care will be delivered in the UK, at least in the short to medium term.

However, there was interest in the extent to which HIV care could be delivered through general practitioners. I felt it was particularly important to get across two points.

The first was that the needs of people with HIV in the UK continue to be complex; it would be a mistake to assume that everyone will eventually be cared for through GPs.

Although care delivery needs to be redesigned as HIV treatment evolves, ripping up the current system of commissioning and delivering health care without recognising its strengths would be a disaster.

Management of patients with uncomplicated HIV infection may in the longer term be suitable for devolution from hospitals to general practice or to polyclinic-type centres, where district clinical nurse specialists can deliver HIV clinics. Innovations in monitoring technologies and information technology, coupled with greater durability of HIV treatment, mean that most people who start HIV treatment without any symptoms might rarely have to attend a hospital for care after initial work-up.

Secondly, new technologies allowing self-monitoring of a condition, and delivery of drugs to home or work, will reduce patients’ future need for interaction with general practice. With good patient information and a supportive healthcare system, many people with HIV will be able to take greater responsibility for self-management of their condition.

However, it is overly simplistic to assume that most patients with HIV will eventually be managed through general practice, with high levels of self-care. A recent study projects that, in 2013, 50% of people with HIV receiving care in the UK (39,000 people) will be classified as symptomatic or AIDS-diagnosed.1 This refers to the stage when someone was diagnosed and indicates their subsequent use of hospital services. There is extensive evidence that late diagnosis with symptomatic disease is strongly associated with a higher risk of developing co-morbidities such as cancers, osteoporosis, cognitive impairment and kidney disease.

There will be a need for continued strong linkages between local HIV care and expertise at centres of excellence, with a strong case for concentrating specialist care at a smaller number of major centres. There will be a growing need for collaborative working between HIV services and other specialisms such as cardiovascular medicine, oncology, hepatology and geriatric medicine as the HIV-positive population ages.

Effective commissioning must recognise that the long-term needs of the HIV-positive population will remain complex, possibly for most, requiring care networks within a national or regional framework.

GP commissioning would undermine the evolution of HIV services towards a network model, isolating aspects of care and setting up contractual barriers to collaboration between those with the greatest expertise in managing complex cases – those cases with the greatest potential to incur costs to the NHS. Research shows the average inpatient days for patients with AIDS rose from 7.7 per annum in 1997 to 10.9 in 2006, despite a decline in new AIDS diagnoses,2 indicating the growing complexity of care and ageing of the HIV-positive population.

The Government’s White Paper Equity and excellence: Liberating the NHS has undertaken to put information for patients at the heart of the NHS. The management of increasingly complex conditions requires a continued focus on high-quality patient information to help patients navigate healthcare systems and engage in effective self-care.

Prevention

The Committee has also heard very clear evidence from the Health Protection Agency (HPA) that the biggest priority for prevention in the UK needs to be gay men.

“We are advocating a substantial increase in the intensity of testing in the gay community,” Professor Noel Gill of the HPA told the Committee. He said that the continuing high rate of new infections among gay men needed to be tackled by Intensive Combination Prevention (ICP, see Where next for HIV prevention?), built around the GUM clinic network.

There was considerable disagreement in the evidence given to the Committee on the current state of HIV prevention in the UK. A minority of witnesses and submissions were highly critical of current HIV prevention messages targeting gay men, criticising them for appearing to condone sex without condoms.

Most witnesses stressed another problem: the sheer lack of scale. Despite a lifetime treatment cost of around £285,000 per infection, the HPA estimates that only 3% of the entire NHS funding allocated to HIV is spent on prevention.

The Committee returned again and again to this problem, and it seems likely that it will make a strong recommendation that more money needs to be devoted to HIV prevention in the UK. It was highly critical of current levels of spending during an exchange with Health Minister Anne Milton, who refused to give any indication that current efforts could be improved if a bit more money could be spent. But then what else would a government minister say?

Unfortunately, it is clear that one thing that excites the Committee is the idea of another national campaign like the ‘tombstone’ campaign of the 1980s. Milton expressed scepticism about this approach, and it would divert attention away from the bigger issue of how we increase the scale and effectiveness of prevention, but don’t be surprised if it’s a headline recommendation.

The Committee, which was originally going to report its conclusions by the end of July, now plans to publish them in the early atutmn. I predict this will kick off a period of intense scrutiny of the way in which HIV prevention and treatment are organised in the UK.

References
  1. Mandalia S et al. Rising population cost of treating people living with HIV in the UK, 1997-2013. PLoS One, 5, 12: e15677, 2010.
  2. Op. cit.

 

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