Living with HIV has changed significantly over the years, thanks to improved treatment options, greater public education, and the gradual dismantling of discriminatory laws — including outdated restrictions on blood and organ donation, barriers to IVF and sperm donation, and the criminalisation of HIV transmission. HIV research and science is continuing to evolve, so it is always important to keep updated on any new developments from novel treatment options to innovative ways to manage living with HIV.

However, it can be hard to know where to start in terms of research and reliable resources and information. That’s why, in collaboration with ViiV Healthcare, we sat down with Dr Tristan Barber and Tom Hayes-Isaacs. Tristan is a consultant physician focussing in the field of HIV, who has more than twenty year’s experience and is the new chair of the British HIV Association (BHIVA). Tom is an awareness activist who began blogging about their experiences of living with HIV when they were diagnosed in 2011, and who now continues this mission of battling misinformation and raising awareness with the charity Saving Lives UK.

Below, Tristan and Tom engage in an in-depth conversation around key topics for people and communities living with HIV, as well as allies looking to get better informed. From changing HIV treatment options to advice for people or communities living with HIV at different stages of diagnosis, navigating the patient/healthcare practitioner relationship, and battling stigma, here are key points you need to know, spoken through by experts with lived experience. 

How HIV has changed

“Compared to the 80s when life expectancy was short and there was no successful treatment, the changes in the management of HIV have been incredible” – Tristan Barber

Tristan, as a doctor and researcher, what do you think has changed in the management of HIV and people living with HIV since the 80s? 

Tristan: Many people living with HIV can now live their lives normally. Treatment can be as simple as one pill once a day or different formulations and modalities to suit each individual’s need. They can have children, and work in almost every career. They cannot transmit the virus sexually if on treatment with an undetectable viral load on a blood test. Compared to the 80s when life expectancy was short and there was no successful treatment, the changes have been incredible.

We have gone from having regimens where tablets need to be taken multiple times per day to now having regimens which allow for medication to be taken much less frequently. What new treatment options have become available during your career?

Tristan: I have worked in the HIV field for over 20 years. When I started, we had limited treatment options, many with lots of side effects and toxicities. I have worked on and seen the development of new drug classes, particularly the integrase inhibitors which are now in first line treatment options around the world in all major guidelines. I have also seen the development of PrEP, an antiretroviral that can be taken daily or as needed to prevent someone acquiring HIV through condomless sex. 

Tom, you were diagnosed 14 years ago, in 2011. How has treatment changed recently since your diagnosis?

Tom: HIV treatment has changed dramatically over the past forty years, but even in the fourteen years I’ve been diagnosed the pace of change hasn’t slowed down.

Back in 2011, I was taking one pill once a day – something that was very important to me to aid with my adherence (taking treatment at the same time each day). Unfortunately, that older medication had some pretty unpleasant side-effects. I’ve changed a couple of times since then, and now I’m very happy and not experiencing side effects on a newer combination pill.

The patient/doctor relationship

“Your quality of life is more important than starting an awkward conversation” – Tom Hayes-Isaacs

From your medical perspective, Tristan, how has the relationship with your patients changed over time? 

Tristan: The community has always been at the forefront of advocating for HIV treatment and care. Some key slogans support this particularly ‘nothing about us without us’. To be honest I don’t even use the term ‘patient’ anymore. These are people, people with HIV, and they are experts by experience. I think in many ways HIV has led on person-centred care, placing people and their loved ones in the centre. In many ways this hasn’t changed, as it was true in the early days also, where HIV services stood up for people experiencing stigma, and provided care in a unique way. Now that HIV is more manageable we continue to strive for this despite funding restrictions that may make it difficult for us to always provide everything we would like to.

And what does a good patient/HCP relationship look like in your opinion? 

Tristan: It should be open, honest, trustworthy, and never complacent! As HIV is a lifelong condition it needs to be a partnership, with both people working together to achieve the best outcome for the person with HIV.

Tom, with the above in mind, how is your relationship with your current doctor and what do you think makes a good patient/doctor relationship?

Tom: I’m very lucky to have a doctor that is both one of the best in her field, as well as a truly wonderful human being. Although I may only see her a couple of times a year, we chat for ages about what’s been going on in both our lives. The actual time spent on HIV is probably in the minority compared to the amount of gossiping! Regrettably, not everyone has the same relationship with their HIV care team. One of the first doctors I had was a very grumpy gentleman who treated the patients like numbers – not people. 

A good patient-doctor relationship must be grounded in honesty and mutual respect. As our doctor you’re asking us to share very personal information about ourselves, our sex lives and more – people aren’t going to do that if they don’t feel safe and respected. As patients we need to recognise that our doctors need us to be onboard and engaged so that we can pick the right treatments and care for the best outcomes.

To both of you, how can people with HIV advocate for their needs? 

Tristan: I think the best way is to be prepared! Keep notes between appointments – what isn’t working for you, what problems have you had, what do you need from the appointment at your clinics? If something isn’t working, say so. Feedback always shows that people like seeing the same doctor, who knows their story, but sometimes I think seeing someone new, even if only for one visit, may give a different perspective, result in different questions or referrals, and can be a way to get a different opinion, even if you then revert back to your long standing and trusted clinician. We all work as a team and want the best thing for those we care for.

Tom: Sometimes we all need to be our own advocate and that can often seem daunting, but no-one knows your needs like you do. Understanding more about your condition, your care and your treatment goes a long way towards making you feel empowered to advocate for yourself. You don’t need to be an expert, but knowing the basics will help you and your doctor have a more constructive conversation and hopefully build a treatment plan that fits all your needs.

If you don’t feel you’re getting the level of care and support that you need from your HIV care team it’s important to know that you have options. You can ask to see another doctor or nurse. You can move your care to another HIV clinic. Don’t be afraid to speak out. Your quality of life is more important than starting an awkward conversation.