12-13 - Cover Story: We've Come a Long Way

The treatment and management of HIV has a long history, not without its turbulence. In the early years of the HIV and AIDS epidemic, an HIV diagnosis was almost always met with fear and terror, and the belief that it was a death sentence. For many people it was.

Effective treatment, which began to emerge in the mid-1990s, helped some people diagnosed in those early years to survive. In the years since, and with the development of novel treatments, more and more people are showing they can live long and fulfilling lives while also being HIV positive.

Most recently, the advent of U=U (undetectable = untransmittable) now means that people who are on effective treatment and have an undetectable viral load cannot pass the virus on to their sexual partners.

Today, 40 years on, thanks to decades of clinical research, innovation, advocacy and cross-sector collaboration, HIV has largely become a chronic condition in the UK. The UK has led the way and in 2020 – for the first time – the UK achieved the UNAIDS 95-95-95 targets of 95% of people living with HIV being diagnosed, 95% of those diagnosed being on treatment, and 95% of those on treatment having an undetectable viral load.

The progress which has been made through improvements in testing and treatment has been remarkable, and pleasingly new diagnoses of HIV, and deaths, due to the virus continue to decrease in the UK.

Following these successes, we have seen an increase in the numbers of people accessing HIV care who are aged 50 or older. In 2018, 40% of people accessing HIV care in England were aged 50+, a figure which rose to 48% in 2021 and is on a trajectory to pass half of all people accessing HIV care in England within the next couple of years.

This brings with it a host of new challenges – like the management of other long-term conditions in addition to HIV, access to adequate social care, the impact on mental health and a higher likelihood to experience loneliness. Or continued stigma or self-stigma and specific impacts on women with HIV, such as menopause and heart and bone issues.

Many uncertainties remain about how HIV interacts with the ageing process – there is no blueprint for growing older with HIV. This generation that is ageing with HIV is the first to do so, and no generation has before had to face the myriad challenges of ageing with this backstory behind them.

So, we asked ourselves what needs to happen next? We need to celebrate the achievements in the fight against HIV and AIDS without perceiving the challenge to be over. We need to recognise and embrace the changing landscape of HIV care which is in front of us. And more than anything else we need to stop speculating and listen to people living with HIV themselves.

Fifty Over 50 is a unique listening exercise. Its vision was not to conduct scientific research but to seek meaningful, qualitative accounts of experience to add to the body of evidence and existing insights on HIV and ageing.

To do this, it was critical we worked in partnership to shape the approach. The Whole Person Care (WPC) Partnership, a coalition between MSD UK and several HIV community and professional organisations, worked to form a framework sympathetic to the diverse nature of those impacted by HIV and their stories.

Fifty Over 50 set out to speak with 50 people living with HIV aged 50+ willing to collaborate and share their first-hand accounts. Resulting contributors ranged from aged 50 to 80, were diagnosed at a range of times, from the 1980s through to the last decade, and as much as possible represented a balance of genders and backgrounds.

It would be easy to fall into the trap of talking about older people with HIV as one group, but even a cursory glance at the experiences in Fifty Over 50 will highlight the folly in that approach. Not only are the contributors diverse in demographic, but also in their outlook on life. While there are some commonalities of experience, Fifty Over 50 doesn’t provide any easy answers via consensus.

Fifty Over 50 has, however, helped us signpost some of the key issues that clearly need more consideration from policymakers and those who can influence the commissioning and delivery of services for people living with HIV, as well as those who provide support services for older people.

In 2019, the Government announced its goal to end HIV transmissions in England by 2030, through ‘better prevention, detection, and treatment’. Alongside these important pillars, to achieve this goal sufficient focus must also be provided to the over 90,000 people currently living with HIV in England.

Policy and healthcare services must listen and adapt to reflect the changing needs of people with HIV, where areas such as quality of life are becoming increasingly important for an ageing population.

The project brings into focus how for many in the HIV community being well is about more than just viral suppression, it’s also about living well. By taking a person-centred approach people living with HIV can be encouraged to remain active in their care throughout their whole life, and in doing so remain well, remain undetectable and remain untransmissible.

MSD and the WPC partners are committed to supporting people who are growing older while living with HIV. We are united in our belief that more needs to be done in this area, and that the voices of people with lived experience should be central to this. We will continue to partner together on the priorities identified through Fifty Over 50, with a commitment to deliver meaningful work as a result.

Growing older with HIV

Providing a platform to listen

Living well for life