New booklet: A long life with HIV

We have produced a new booklet that provides information on living well with HIV as you get older. A long life with HIV is available to read online, and in print through our patient information scheme.

The booklet is part of a range of resources available on aidsmap on health problems, co-morbidities and challenges that people living with HIV may face as they get older. You can find all these resources on our Living with HIV as you get older page.

A long life with HIV

Glossary

lipid

Fat or fat-like substances found in the blood and body tissues. Lipids serve as building blocks for cells and as a source of energy for the body. Cholesterol and triglycerides are types of lipids.

diabetes

A group of diseases characterized by high levels of blood sugar (glucose). Type 1 diabetes occurs when the body fails to produce insulin, which is a hormone that regulates blood sugar. Type 2 diabetes occurs when the body either does not produce enough insulin or does not use insulin normally (insulin resistance). Common symptoms of diabetes include frequent urination, unusual thirst and extreme hunger. Some antiretroviral drugs may increase the risk of type 2 diabetes.

acute infection

The very first few weeks of infection, until the body has created antibodies against the infection. During acute HIV infection, HIV is highly infectious because the virus is multiplying at a very rapid rate. The symptoms of acute HIV infection can include fever, rash, chills, headache, fatigue, nausea, diarrhoea, sore throat, night sweats, appetite loss, mouth ulcers, swollen lymph nodes, muscle and joint aches – all of them symptoms of an acute inflammation (immune reaction).

comorbidity

The presence of one or more additional health conditions at the same time as a primary condition (such as HIV).

high blood pressure

When blood pressure (the force of blood pushing against the arteries) is consistently too high. Raises the risk of heart disease, stroke, kidney failure, cognitive impairment, sight problems and erectile dysfunction.

More and more people living with HIV are now in their fifties, sixties or beyond. With the right treatment and care, most people with HIV can expect to have a near-normal life span.

Many people have concerns about getting older with HIV. A long life with HIV focuses on the practical things that people can do for themselves to look after their own health.

The booklet also provides information on health issues which may arise when living with HIV long term. This information can often be overwhelming but it’s been broken down into small sections. We’ve also included lots of illustrations throughout the booklet to help make it more accessible as well as visually appealing.

The booklet is not intended to replace discussions with medical teams – in fact, it should help you to engage with your doctor or healthcare providers about your health care.

A long life with HIV includes sections on:

  • HIV and your health: life expectancy for people with HIV, HIV and the ageing process, tailoring your treatment and multiple medications and drug interactions.
  • Other health issues: monitoring your health, and health conditions including raised lipids, high blood pressure, diabetes, bone problems and menopause.
  • Things you can do to look after your health: taking HIV treatment, stopping smoking and getting more physical activity.
  • Preparing for the future: work and employment, putting your affairs in order and learning how to manage multiple healthcare providers.

Each chapter also includes a ‘Find out more’ section, signposting to further information by NAM or other organisations.

One of our reviewers, Dr Tristan Barber from the Royal Free Hospital in London has commented:

“This brilliant booklet from NAM not only looks at the possible physical impacts of HIV and HIV therapy on people living with HIV infection as they age but also considers some of the psychological and social impacts too. It explains things clearly and is a fantastic resource for clinicians and patients caring for people living with HIV as they get older.”

Living with HIV as you get older

A long life with HIV is part of our Living with HIV as you get older range of resources which also includes:

  • Factsheets: 24 titles including HIV and the ageing process, Life expectancy for people living with HIV, Multiple medications and drug interactions and Dealing with multiple healthcare providers.
  • Side-effects checker: a tool to help you talk to your healthcare team about any side-effects or symptoms that you are experiencing.
  • Side-effects: a booklet that provides information about possible side-effects of HIV treatment.  
  • Translations: a selection of factsheets translated into Greek, Spanish and Portuguese.

NAM’s Patient Information Subscription Scheme

UK-based HIV and GUM clinics can order copies of A long life with HIV and Side-effects as well as all our other booklets and leaflets in our series The basics, through our online portal as part of our patient information subscription scheme.

To find out if your clinic is registered or for information on joining the scheme, please contact Susan at susan@nam.org.uk or call 020 7837 6988.

Thank you

A huge thank you to the following people for their assistance in reviewing this booklet:

Professor Jane Anderson, Homerton University Hospital NHS Foundation Trust; Dr Tristan Barber, Royal Free London NHS Foundation Trust; Clive Blowes, Terrence Higgins Trust; Garry Brough, Positively UK; Darren Brown, Chelsea & Westminster Hospital NHS Foundation Trust; Dr Stuart Gibson, Barts Health NHS Trust; Dr Tom Levett, Brighton and Sussex University Hospitals NHS Trust; Jo Josh, UK-CAB; Dr Fiona Lampe, University College London; Dr Frank Post, King's College Hospital NHS Foundation Trust; Dr Damien Ridge, University of Westminster; Dr Dana Rosenfeld, Keele University; Chris Sandford, Bloomsbury Patient Network; Dr Andrew Ustianowski, Pennine Acute Hospitals NHS Trust; Dr Jaime Vera, Brighton and Sussex University Hospitals NHS Trust; Dr Shema Tariq, University College London; Shaun Watson, Chelsea & Westminster Hospital NHS Foundation Trust; Professor Alan Winston, Imperial College Healthcare NHS Trust; Dr Mike Youle, Royal Free London NHS Foundation Trust.

NAM is grateful to Gilead Sciences Europe Ltd, Janssen-Cilag Ltd, Merck Sharp & Dohme Corp and ViiV Healthcare for funding the development of A long life with HIV and other resources in the Living with HIV as you get older project. Our funders have had no editorial control over the content.

Edit: This booklet is now only available through the Patient Information Subscription Scheme. Ask at your clinic for a hardcopy or online PDF version of the booklet.

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