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World AIDS Day is 25 years old — how things have changed for HIV patients

To mark World AIDS Day, HIV consultant pharmacist Heather Leake-Date says the outlook for HIV?patients has improved and highlights the role of pharmacists in HIV management

By Heather Leake Date

To mark World AIDS Day, HIV consultant pharmacist Heather Leake Date says the outlook for HIV patients has improved and highlights the role of pharmacists in HIV?management

Nowadays there is a plethora of days, weeks or months dedicated to raising awareness of particular health conditions or issues. For example, I am writing this on European Antibiotic Awareness Day, which comes hot on the heels of Breast Cancer Awareness Month. Arguably the trend started 25 years ago, on 1 December 1988, when World Aids Day (WAD) became the first global health day.

The now familiar “AIDS awareness” red ribbon is recognised worldwide and reminds us of the focus of WAD: uniting to fight HIV, showing support for people living with the virus and remembering those who have died.

The theme of WAD for 2011–15 is “Getting to zero: zero new HIV infections; zero discrimination; zero AIDS-related deaths”. So how are we doing and what are the implications for pharmacy in the UK?

Globally there is still much to be done in diagnosing and treating those living with HIV (many of whom are unaware of their infection), but progress has been encouraging. In most countries there has been an increase in testing and uptake of antiretroviral treatment (ART), with a concomitant reduction in transmission, morbidity and mortality. Worldwide, the annual number of AIDS-related deaths has fallen by over 25 per cent (from 2.3 million in 2005 to 1.7 million in 2011).

In sub-Saharan Africa (home to over two-thirds of the estimated 35 million people living with HIV) the reductions have been even more dramatic. During the same period there was a 33 per cent reduction in AIDS-related deaths in the region but, in Botswana, where 96 per cent of those who need ART have access to it, deaths dropped by a staggering 71 per cent.

That is the good news. The bad news is that globally it is estimated that 50 per cent of HIV infections are undiagnosed, which is what continues to drive new infections and HIV-related illnesses and deaths. Notably, the epidemic is still escalating in Eastern Europe and Central Asia, where rates of testing, access to ART and retention in care are all lamentably low.

World leader

What about the UK? HIV is a specialty in which the UK can truly be said to be a world leader. The oft-maligned NHS compares favourably with other countries (including those in Western Europe and the US). It has lower rates of undiagnosed HIV (approximately 25 per cent of the 100,000 people living with HIV in the UK) and good access to ART (in 2012, 86 per cent of those known to be HIV-positive were receiving treatment, up from 76 per cent in 2008).

Specialist centres typically expect to see on-treatment success rates of 90 to 95 per cent (patients whose plasma HIV RNA ­is below 50 copies/ml, also called an “undetectable viral load”).

No complacency

Yet there is no room for complacency. Every new HIV infection is estimated to cost about £1m, so reducing transmission saves lives and money. Late presenters (those who already have significant immune suppression when first diagnosed with HIV) are also much more likely to die within a year of testing positive. The Halve It Campaign ( is organised by a coalition of experts (including a pharmacist representative from the HIV Pharmacy Association), and is addressing this very issue.

The campaign’s aims are to: halve the proportion of people diagnosed late with HIV (CD4 count <350 cells/mm3) and halve the proportion of people living with undiagnosed HIV by 2015. Reducing the number of people with undiagnosed HIV infection is an important first step towards the World Health Organization goal of “zero new infections”.

This year’s National HIV Testing Week is 22 to 29 November: the slogan is “it starts with me” (encouraging everyone to take responsibility for their own health by testing for HIV).

Community pharmacists in particular are well placed to provide HIV prevention information and services (eg, needle exchange, condom provision) as well as testing for HIV and some other sexually transmitted infections. Local authorities with a high HIV prevalence (>2/1,000) are encouraged to ensure testing is available in a variety of settings outside sexual health clinics, although these services work best when there are clear referral pathways to specialist clinics for those who test positive.

However, most HIV specialist pharmacists and pharmacy technicians work in secondary care, and this is probably where most of the challenges currently lie. In many respects we have become the victims of our own success. HIV is a relatively new and small specialty, but from the beginning of the epidemic in the early 1980s it has frequently led the way in multiprofessional teamworking and patient involvement. Pharmacists have long been key members of the multidisciplinary HIV team, frequently holding their own clinics, contributing to virtual clinics and providing information to patients and staff on drug interactions, to name just a few roles.

However, in an era of financial austerity there is increasing pressure on all specialties and professions to demonstrate the value of their contribution (and to eliminate the activities that offer the fewest benefits). Few would argue that this is a laudable aim — but it is unclear how best to do it. This conundrum is not unique to HIV (or to pharmacy), but it is one we need to address urgently.

Once people have been diagnosed with HIV they can be given treatment — the main tool to help reach the final goal of “zero AIDS-related deaths”. Antiretroviral (ARV) therapy is one of the most cost-effective healthcare interventions, but it is not cheap. Over the past five to 10 years the increase in ARV expenditure has been partly offset by the expansion of home care services and, more recently, the outsourcing of outpatient dispensing to community pharmacy partnerships.

Dispensing of non-ARVs has been reduced significantly, with most patients obtaining them via their GP and community pharmacy. The introduction of generic ARVs is beginning to make an impact and is stimulating debate about the relative merits of combination tablets and single tablet regimens, although it is unclear as yet what this will mean in practice.

ART has evolved tremendously since the early days of “triple therapy” in the mid 1990s. Back then, medicines were typically taken at least two or three times a day, with dietary restrictions, and had a high pill burden.

Treatment success was known to hinge on a sustained high level of adherence, and specialist pharmacists were recognised as playing a valuable role in supporting patients to achieve this. Nowadays most regimens are once daily, with fewer dietary restrictions and a lower pill burden.

With simpler treatment and high rates of virus suppression, combined with the pressures of an increasing cohort, how should services adapt and become “leaner”? Which activities (if any) can be done differently (or by non-specialists)? How do we assess the potential impact of any changes on patients and treatment outcomes?

Adherence is still crucial for ART success, and as the population with HIV ages, polypharmacy and the management of co-morbidities are becoming increasingly important issues. Conversely, patients whose condition is stable are beginning to be seen less often and many clinics offer telephone or email clinic options for some appointments. How much (and what type of) specialist pharmacist input will give “the biggest bang for the taxpayer’s buck”?

As we approach the 25th anniversary of the first World Aids Day, I have a feeling of déjà vu; in fact, I am sure I recall very similar discussions about how to demonstrate the value of clinical pharmacy back then. We have come a long way in 25 years and I hope that over the next 25 years we will see HIV pharmacy continue to adapt to the changing needs of our patients.

I hope that all pharmacists will contribute in whatever way they can to helping the “Getting to zero” and “Halve it” campaigns reach their goals, and that we will see the subsequent emergence of an HIV-free generation.


•    For more information on WAD, go to
•    For UK HIV data, go to

Citation: The Pharmaceutical Journal DOI: 10.1211/PJ.2013.11130583

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