Undoubtedly, progress toward ending HIV is a major twentieth-century success story. Within our lifetimes, HIV has gone from a life-ending condition to being completely treatable and non-transmissible. It is a fact that a person living with HIV today who is on effective treatment can’t pass it on.

These significant advances in treatment mean that the vision of ending HIV transmission has become tangible. The UK has an opportunity to be a world leader in this space, and the government is committed to being the first country in the world to achieve zero new HIV infections, AIDS and HIV-related deaths in England by 2030. The current political turmoil and the new cabinet’s lack of appetite for prevention do not seem to have tainted a commitment to the effective implementation of the HIV Action Plan.

So where are we now?

HIV prevention is working. For the second year in a row, England met its 95:95:95 HIV treatment targets. The number of people diagnosed has fallen by 35% from 2014 – 2019, particularly among gay and bisexual men. In 2019 an estimated 94% of people living with HIV had been diagnosed, 98% of those diagnosed were on treatment, and 97% of those on treatment had an undetectable viral load – meaning they cannot pass on the infection.

Few countries can show this level of success but as we approach eliminating HIV transmission, we need to ensure that the most vulnerable do not fall through the gaps.

Last week I attended the 5^th biannual National HIV Prevention conference. It was the first time so many health professionals, community experts, and researchers working in HIV prevention in the UK have met face to face since the pandemic.

There was palpable enthusiasm to maintain momentum and go further, faster and harder than ever before. And rightly so. Lives depend on this work. Professor Kevin Fenton asked attendees to ‘celebrate and recommit’ and stated that progress on the HIV Action Plan has been necessary but insufficient to end HIV transmissions in a UK context.

As the epidemiology of the virus evolves, what is the future of the fight against HIV?

Solely focusing on diagnosis as a measure of progress does not tell the whole story. Retention of people in care is key to managing HIV transmission. UKHSA estimates that between 15,000 and 20,000 people are living with transmissible levels of the virus in England. Delving into this a bit further reveals that only 24% of these people are undiagnosed, and over 7,000 people living with HIV in the UK have not been retained in care (lost to follow-up).

This problem, it seems, is much larger than was previously recognised. Lost to follow-up is now replacing those still undiagnosed in driving HIV morbidity and mortality.

Patients lost to follow-up are critically immunosuppressed, resulting in immense human tragedy. Speakers at the conference shared first-hand accounts of people presenting at Kings College Hospital with advanced AIDS, despite being aware of their status. This issue disproportionately affects women of black ethnicity from areas of social deprivation. As such, it represents a significant health inequality.

But in a country with universal health coverage free at the point of access, the question surely must be – why?

Reasons will differ on a case by case basis but can be broadly broken down into three key areas:

1. Stigma kills. It prevents people from getting tested and accessing treatment because they are afraid. It interacts with homophobia, racism and transphobia and prevents people from meeting their need to thrive. It means that patients are treated differently by health care providers once their HIV status becomes known. All of these factors prevent access to care.
2. The current cost of living crisis means that for some, attending appointments is simply unaffordable. Rocketing childcare and transport costs and the rise of zero-hours contracts coinciding with a huge NHS backlog has meant that logistically retention in care is becoming more difficult to manage.
3. Some patients are more complex than others. People are individuals with chaotic lives and can experience mental health, mobility or drug and alcohol issues further complicating the matter. There is no baseline measure in place for treating complex HIV patients. The care you receive depends on the training of your physician.

So what can be done?

It’s about people and partnerships. Putting patients at the centre and working together to adopt a proactive approach to prevent people from falling out of care. Every part of the system has a responsibility to find solutions that work. Innovations in diagnosis (oral swabs) and treatment (long-acting injectables), or personalized care, such as offering flexible appointments at alternative venues and providing food and travel vouchers all have a role to play. The voluntary sector are well placed to provide comprehensive support in order ot allow clinicians to focus on the clinical aspects of care.

One thing is certain – offering patients a full range of choices is central to success.