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Deborah Gold reflects on the remarkable advances made in the HIV field in the last thirty years
Date: 12 Dec 2017
Author: Deborah Gold
Deborah's efeature was published in the December 2017 edition of the Sexual Health and HIV Policy eBulletin.
Deborah Gold is Chief Executive of National AIDS Trust (NAT), the UK’s leading HIV policy charity. In the final eFeature for 2017, Deborah briefly reflects on the remarkable advancements made in the HIV field in the last thirty years and on more recent progress in reducing new infections in gay and bisexual men for the first time since the HIV epidemic began. She acknowledges that we are living through a time of real excitement and possibility in the HIV sector but cautions against complacency. She says much remains to be done – in protecting services, sharing learning, influencing commissioning and stamping out stigma – and that securing further progress will require leadership, a laser-like focus and continued investment.
Recent months have been a time of reflection at NAT. As we celebrate our 30th birthday, we’ve been focusing on where we’ve come from and how far we have to travel if we are to meet the aims of our current campaign to end HIV and its negative impact before another 30 years passes us by.
That 30-year lens displays a powerful picture. Readers of this bulletin all know how it began - with an information vacuum that sucked in stigma, fear, illness and the death of many, many people, loved and remembered still.
But there has also been an incredible trajectory. In the last thirty years, we have moved from the identification of HIV and the ability to test, through the discovery of anti-retroviral treatment, post-exposure prophylaxis (PEP) and Treatment as Prevention (TasP), and on to the potential of pre-exposure prophylaxis (PrEP) and the recent news of the first significant drops in new diagnoses in London.
Alongside these remarkable medical advancements an alliance of people living with HIV, politicians, activists, clinicians, policy makers and the third sector have worked together to achieve real policy change. These include: legal protection, now that HIV is recognised as a disability and pre-employment heath questionnaires are unlawful; an evidence-based blood donation policy with the end to the lifetime ban on gay men giving blood; changes to the disability benefits system so that people living with fluctuating conditions such as HIV have more chance of accessing benefits when needed; free access to HIV treatment for everyone living in the UK, wherever they are from; and of course, access to PrEP for the 10,000 people at greatest risk of HIV.
We are living in a time of real excitement and possibility in the HIV sector. Recent Public Health England (PHE) data confirms that in 2016, for the first time since the epidemic began, we have seen a reduction in the number of gay and bisexual men newly diagnosed with HIV. Nationally the number dropped by 21%, in London 29%. We’re finally seeing the proof of what the HIV sector has been united in saying for years. Combination HIV prevention works. And, little noted in the press, that same PHE report also included the news that now, people diagnosed with HIV in good time can expect their life expectancy to be similar to someone without HIV. This is a truly inspirational achievement.
But, at such an exciting time, we need more than ever to avoid complacency and intensify our efforts. Because, despite these gains, we are far from where we need to be.
The most significant reductions in new diagnoses are located in London and focused on gay men. We must do more and better. We need to translate these gains outside of London and across the community of people at most risk of HIV. That means taking what we know about combination prevention and putting in the time, effort and resources needed to understand how to apply this to other communities and localities. There are no one-size-fits-all answers, and the uneven progress underlying the statistics demonstrates this. It also means refocusing our efforts not just at prevalence but also at late diagnosis – where again uneven progress is evident.
I see three categories for policy action over the next few years. The first is working together to protect what we have achieved: the flourishing ecology of HIV prevention services, genitourinary medicine (GUM) clinics and HIV support services. Together, these services have been responsible for implementing the combination prevention approach, and for supporting people living with HIV to find their voices, find their feet, adhere to medication and live full and happy lives. Yet the cuts to public health funding and the financial pressure on local authorities mean that these crucial services have already experienced steep cuts. And each week we hear increasingly worrying stories about huge waiting lists to access GUM clinics. There is work needed at national level to protect these services. This includes making the case to decision makers that they are needed and working to ensure that public health cuts are reversed. Further, the ring fence on public health spending must be retained, and any move to fund public health through business rates must not result in an unfair outcome where the areas with the greatest need have the least income. Increasingly, however, influencing needs to take place locally to protect individual services and to take advantage of changes in commissioning and NHS structures such as Sustainability and Transformation Partnerships (STPs), to share the years of learning from HIV as well as ensure that those at risk of and living with HIV are not left behind.
The second category is to take advantage of opportunities there for the taking. This includes ensuring that the promised new rules on relationships and sex education are truly LGBT inclusive and equip young people with the knowledge, skills and confidence they need to protect themselves from HIV and sexually transmitted infections (STIs), and working together to ensure that PrEP is easily available to everyone who needs it.
Finally, we must work to open up new opportunities and solve some of the most intransient problems. Chief among these is the impact of stigma – both on the lives of those living with HIV and as a barrier to testing and treatment. Important examples include media portrayal of HIV, managing the negative impact of the criminalisation of HIV transmission, ensuring there is no discrimination in employment and recruitment, and eradicating stigma in an NHS setting.
So, there is much left for us to do, and further progress will need leadership, a laser-like focus and continued investment. There is no one reading this eFeature who does not have a role to play in that.