THINKING ABOUT YOUR LONG-TERM HEALTH

Thanks to advances in HIV treatment and care, having a long, healthy life is an achievable goal for most people living with HIV today.1

However, as HIV life expectancy continues to increase, our health priorities and treatment needs may change.

Starting the conversation about your future health now and planning ahead with your healthcare team can help you make sure that as you grow older, you aren’t just living well with HIV, you’re thriving.

It’s never too early

To ensure you remain as healthy as possible  when living with HIV, it’s important to think long-term about your health – and there’s no better time to start than now.

No matter how old you are or how long you’ve been living with HIV, being proactive in your HIV treatment and speaking regularly with your healthcare team can help ensure your evolving needs are met.

HIV treatment over a lifetime

HIV is a lifelong condition and people living with HIV can look forward to just that: a long life.1 Whether you were born with the condition or you were diagnosed in your 50s, you can expect a happy and healthy life. In fact, as long as you are diagnosed in good time, continue to take your treatment as prescribed, and look after yourself, the life expectancy for someone living with HIV is the same as for everyone else.2

“It’s all about making sure as I age, there are more treatment options that are kinder on my body.”

Many people living with HIV have concerns about the impact of taking medication over a lifetime – this is often referred to as long-term side effects.

It’s natural to have concerns about how treatments may impact the future of your health when you live with a long-term condition like HIV. In fact, the Positive Perspectives study found that 68% of people were worried about the long-term effects of HIV medicines.3

Regular conversations with your doctor and connecting with HIV support groups can help to ease your concerns. Understanding your treatment options can also help you make more informed decisions about your HIV treatment and care.

68% were worried about long-term side effects of HIV medicines
68% were worried about long-term side effects of HIV medicines

It’s important to remember that, if your current HIV treatment doesn’t suit you or your lifestyle, you can speak to your doctor about changing it. Treatments are continuously improving to become a smaller part of your life. 73% said that they were open to the idea of taking a HIV treatment with less medicines, as long as they remained undetectable.3

If you have concerns about long-term side effects or your health, talk to your healthcare team. You and your doctor can work together to find the combination that is right for you and may save you taking more medicines than you need to.

Planning for a healthy future

HIV treatment is always evolving and improving, so keeping up to date with the latest advances and regularly reviewing your options with your doctor is a good way to look after your long- term health.

Even if old age is half a lifetime away, you may have still been living with HIV for a long time. It’s never too early to think about your long, healthy future. Working with your healthcare team on your long-term treatment goals can ensure that as your needs change over the years, your treatment does too.

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LIVING WITH HIV OVER 50

It is currently estimated that around 25% of people living with HIV globally are aged 50 and over, and this number is increasing.4

As a natural part of growing older, people living with HIV often have to manage other health conditions along with HIV – but that shouldn’t impact what you can do or how you feel.

There are lots of ways you can ensure you age well with HIV. From staying social to partnering with your healthcare team to manage multiple medications, here are some top tips for staying healthy in mind and body in your fifties and beyond.

Looking after yourself as you age with HIV

Read these top tips from people living with HIV to help keep your body, mind and soul in great condition.

We know that you could have been living with HIV for 25 years or more and today be any age (including 25!), so whilst these tips were written for older members of the community, they are a great starting point for anyone living with HIV.

  • Body

    Stay active

    There are lots of physical and mental health benefits to exercise including preventing age-related conditions such as heart disease and diabetes.5 “A little bit, often” is a good approach.

    Ideally, try to commit to an hour of physical activity that significantly raises your heart and breathing rate, three times a week.5 The effort is always worth it.

    Know your body

    It’s important to be aware of small changes in your body but don't become paranoid about them! Some changes are natural parts of ageing, others may be HIV- or treatment-related. By talking to your healthcare team about what you’re experiencing, you can find the cause of these changes together.

    Don’t ignore it

    You know when something doesn’t quite feel right in your body. It’s important to go with your gut and act on those feelings of uncertainty. Speaking to your doctor as soon as you notice a difference can help catch any potential issues quickly, so you can stay in control.

  • Mind

    Be kind to yourself

    Whether you were diagnosed 30 days ago or 30 years ago, saying “I'm HIV positive” can be very difficult. Having a positive attitude towards your status and yourself can be a big help for your mental wellbeing.

    Stigma can hurt

    Even though HIV has been around for decades, it still carries an unfair and unrealistic stigma. Dealing with this stigma, as well as everything else, can come at a cost to your emotional health.6 What’s important to remember is that stigma is based on fear, not fact. Your life with HIV can be, and is, a beautiful one.

    Surround yourself with loved ones

    The positive strength of friends and family who truly support you can empower you through every stage your HIV journey. Being surrounded by people who have educated themselves about HIV and with whom you can speak freely about your experiences can be great for your emotional wellbeing.

    Chat to an expert

    As with any health-related issue, talking with an expert – doctor, nurse, counsellor – is a wise decision. Many people also find that meeting with a HIV peer mentor is very useful. For a list of reliable resource and information see HIV Support Groups

  • Soul

    Your experience is valuable

    No matter when you were diagnosed, remember how much you have to offer. Our wealth of experience could help inspire future treatment innovations or help other people living with HIV. Why not think about becoming an HIV advocate or peer mentor?

    Full of spirit

    Living with HIV isn’t always easy, but people living with HIV have built the resilience to overcome anything. Despite the hardships, we look to the future with hope, turning challenges into solutions and raising the voice of the community together.

    Keep yourself busy

    Whatever your history or age, research shows that maintaining ‘meaningful occupation’ and staying involved in society is hugely beneficial for a healthy body and mind.6 This could be anything from running a business to collecting stamps!

    Be productive

    Being HIV positive can actually open more doors for being productive. For example, you could volunteer for a local HIV organisation. Your experiences and advice could benefit others going through the very same challenges as you.

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MANAGING HIV ALONGSIDE OTHER CONDITIONS

Thanks to advances in HIV treatment and care, HIV life expectancy has improved exponentially. We’re now seeing the first generation of people living with HIV entering later life and accessing later life care.7

As we all get older, regardless of HIV status, our health gets more complicated. People living with HIV can develop the same age-related conditions that affect everyone such as heart disease, kidney disease, liver disease or diabetes. Living with a chronic condition like HIV, also increases the risk of developing other health conditions and certain cancers.2,8

Co-ordinating your care and balancing the medications for these conditions alongside your existing HIV treatment is an essential factor in maintaining a high quality of life as we age.9

Positively Thriving: A World of Difference
POSITIVELY THRIVING

A World of Difference

In this clip from the Positively thriving podcast Tom, Brad and Bryan talk about long-term health, ageing well with HIV, and the benefits of being completely open with your healthcare team.

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Listen to the full episode of Positively Thriving: A World of Difference

HIV & other conditions

There are some health conditions that people living with HIV have a higher risk of developing. Even common illnesses can be more serious for people living with HIV – they can get worse faster than they normally would.

A lot of these illnesses are easily treated, but some of the medications can affect how well your HIV treatment works. It’s important that if you do develop an illness that you’ll need to take medication for, or that is affecting your health and wellbeing, you talk to your healthcare team about it as soon as you can.

  • Hepatitis

    Hepatitis is a disease that causes serious liver problems and liver cancer. People with HIV have a higher risk for being infected with hepatitis (B and C), and their hepatitis can get worse, faster.10

    Talk to your healthcare team about hepatitis including testing and treatments.

  • Other conditions

    Tell your healthcare team if you have, or have had in the past, any of these conditions:

    • Tuberculosis
    • Diabetes
    • Dental problems
    • Heart disease
    • Cancer
    • Kidney disease
  • Opportunistic infections

    Someone with HIV with a low CD4 count (250 and below) and not taking ART, is more at risk of getting opportunistic infections (OIs).11 These infections, which are caused by bacteria, viruses, fungi, or parasites are less likely to occur in people with a healthy immune system.

    To learn more about opportunistic infections and what they mean for you, click here.

  • Drugs & alcohol⁹

    Drinking alcohol or recreational drug use can:

    • Affect your immune system and may make your HIV get worse, faster
    • Affect how well your HIV medication works

    It’s always best to be honest with your healthcare team about your lifestyle choices. Remember, there are there to help you, not judge you.

Taking multiple medications (polypharmacy)

The longer you live with HIV, the more likely it is that you’ll need to manage different health conditions (comorbidities).

People ageing with HIV experience many of the same health problems as the general population but are also at higher risk of certain conditions such as cardiovascular disease or osteoporosis.11 This means they are more likely to have to take additional medication along with their HIV therapy.

The impact of taking multiple medications

In the Positive Perspectives study people living with HIV shared their experiences of taking multiple medications or ‘polypharmacy’ – that means taking five or more pills a day or taking medicines for five or more health conditions.3

Of the people living with HIV in the Positive Perspectives study:

Polypharmacy statistics
Polypharmacy statistics
Polypharmacy statistics
Polypharmacy statistics
Polypharmacy statistics

The study results showed a strong link between polypharmacy and poorer health, wellbeing and treatment satisfaction.

“I’m hoping that very soon we’ll have long-term therapies so that we don’t have to take medication every day. I would want medication which I could take like once in a year.”

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Thinking about your long-term health
Thinking about your long-term health

What's next?

Understanding the different types of HIV medications available to you can make it easier to talk to your doctor about your treatment options.

Different medicines can cause different side effects: short-term, longer term, drug-to-drug interactions. These may be the result of the drugs being used to treat HIV – not because you’re doing anything wrong.

Working together with your healthcare team to understand what's going on within your body may be the best way to get the most from your HIV care.

References:

  1. National Health Service. Treatment – HIV and AIDS. Available at: https://www.nhs.uk/conditions/hiv-and-aids/treatment/ [Accessed: November 2021].

  2. NAM AIDSMAP. Life expectancy for people with HIV. Available at: https://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv [Accessed September 2021].

  3. Okoli C, et al. Prev Chronic Dis. 2020;17:190359

  4. UNAIDS. Get on the fast-track. The life-cycle approach to HIV. Available at: www.unaids.org/sites/default/files/media_asset/Get-on-the-Fast-Track_en.pdf. [Accessed September 2021].

  5. World Health Organisation. Physical activity. Available at: https://www.who.int/news-room/fact-sheets/detail/physical-activity [Accessed September 2021].

  6. Gallagher M, et al. Front Psychol. 2015;6:1281.DOI: 10.3389/fpsyg.2015.01281.

  7. Psychology. HIV/AIDS in Later Life. Available at: https://oxfordre.com/psychology/view/10.1093/acrefore/9780190236557.001.0001/acrefore-9780190236557-e-430?rskey=KlnJN6. [Accessed September 2021].

  8. National Health Service. Living with HIV and AIDS. Available at: https://www.nhs.uk/conditions/hiv-and-aids/living-with/ [Accessed September 2021].

  9. Althoff K, et al. Curr Opin HIV AIDS. 2016;11: 527–536.

  10. NAM AIDSMAP. End-stage liver disease is a concern for people with HIV and hepatitis B or C co-infection. Available at: https://www.aidsmap.com/news/apr-2015/end-stage-liver-disease-concern-people-hiv-and-hepatitis-b-or-c-co-infection [Accessed November 2021].

  11. Burki T. Lancet HIV. 2019;6:e816–e817.

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