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A to Z of HIV
The medicine used to treat HIV is called antiretroviral therapy — more commonly known as ART. For most people living with HIV, ART consists of a single combination pill (usually containing three drugs) that has to be taken every day. World Health Organisation guidelines advise that a person with HIV commence ART immediately upon diagnosis. This advice came after a major international study found that the health benefits of starting ART ASAP were indisputable.
B Blood tests
Post-diagnosis, you can expect to have your blood screened every three months. This is so your doctor can measure the amount of HIV in your blood and count your CD4 cells. The CD4 count is like a snapshot of how well your immune system is functioning.
CD4 cells are a critical part of your immune system. They’re white blood cells that the immune system triggers to mount a defence against infection and illness. It is the CD4 cells that the human immunodeficiency virus specifically targets. HIV infects and destroys them until they are so depleted the immune system becomes weakened. If your count is low, you are more likely to get sick. Once on treatment, your CD4 count should go up preventing you from getting ill.
It’s important you get the emotional support you need, particularly in the early days of diagnosis. For many people that will mean reaching out to loved ones. Before disclosing your positive status, think about whether your information will be kept private. Remember, once you’ve told someone you have HIV you cannot take it back, so think about who best will be able to keep your confidence.
- Who can I trust with this information?
- Who will offer me the support that I need?
- Who will be able to accept this information without judging me?
- Who will respect my privacy and be able to keep this information confidential?
You do not have to disclose your HIV status to your employer, or work colleagues. You also do not need to tell your doctor, dentist or other health professionals (although it is often important to tell people providing medical treatment about your HIV infection as it gives them a clearer picture about your health).
It’s quite common — but not inevitable — that your HIV treatment may cause some mild side effects. These can include diarrhoea, nausea, headache, tiredness and rash (these usually dissipate after a while though).
Longer-term side effects may include increased cholesterol and disturbances in liver function. Be assured you’ll be regularly screened by your healthcare professional for these and other side effects as part of your routine HIV care.
Many people living with HIV are now aged over 50. Indeed, by 2020, 50 percent of Australia’s HIV population will be 50-plus. HIV infection —coupled with natural ageing — creates added challenges for maintaining good health.
Someone living with HIV may find certain health conditions occurring at a higher prevalence and at an earlier age. Your health will be monitored regularly and your doctor will provide additional treatment if needed. But be reassured, HIV-positive people responding well to treatment can expect to live a normal life expectancy.
If either you or your partner has a sexually transmissible infection (STI) the risk of HIV transmission can be increased. Common STIs include herpes, syphilis, gonorrhoea, chlamydia, genital and anal warts, hepatitis B and C. Most STIs can be diagnosed quickly and treated successfully.
It’s important to protect yourself from STIs because they can cause more severe symptoms and may be more difficult to treat in people with HIV. Condoms offer some protection against STIs but be mindful that they do not offer absolute protection against all STIs.
There is no need to go it alone. There are established peer-support organisations and networks around the country that you can access if you think talking to other people living with HIV will help you come to grips with your diagnosis. These organisations have staff and volunteers who have a good understanding of many of the issues you’re facing and will be able to offer up-to-date information, care and support.
Whilst medical advancements have made leaps and bounds over the past 30 years, unfortunately, when it comes to HIV, some people’s mindsets are stuck in the 1980s. If you encounter an ignorant reaction to your positive status try not to let it bother you.
It’s easy to start internalising stigma — this leaves people living with HIV grappling with feelings of shame, and low self-esteem (see M). Don’t allow people’s opinions to disempower you or make you feel bad about yourself. Discrimination on the basis of HIV status is unlawful across Australia. If you find yourself struggling because of stigma and/or experience discrimination, contact your local HIV org for support.
J Just diagnosed
Discovering you’re HIV-positive is a life-changing experience. Post diagnosis you may experience a whole range of emotions — shock, fear, guilt, anger, self-blame, sadness. If you find yourself overwhelmed at first, it may be useful to take a few days off to de-stress and think through how you want to proceed. Whatever you do, don’t do anything rash; delay big decisions. It’s important not to make any major life changes until you’ve had time to think about where you go from here.
Gradually, your way of dealing with your diagnosis will change and you may start to think about the reality of your positive status differently. Some people start to feel a lot calmer and more optimistic as they begin to learn how HIV can be successfully managed through treatment. If you are struggling with your diagnosis, however, consider seeing a counsellor that specialises in HIV.
Arming yourself with as much information about HIV as possible will help you become more proactive in managing your condition; it will also help you to make informed lifestyle choices. Staff at your local HIV org will be able to answer all your queries. You can also head to napwha.org.au for all the latest information. There, you’ll find a number of helpful resources designed to help you become an active partner in your healthcare.
Receiving an HIV-positive diagnosis is a lot to deal with, and people’s feelings about sex can vary greatly. It may be the last thing on your mind. You may feel “infectious”, angry or depressed, which can result in loss of sex drive (regardless of your partner’s HIV status). Alternatively, you may feel like having a lot of sex.
However you are feeling right now, your feelings about sex will probably change over time. It’s important to remember that HIV-positive people can enjoy a healthy and fulfilling sex life (see S). There are many people out there who will find you desirable regardless of your HIV status.
M Mental health
HIV comes with its share of mental challenges: from the shock of diagnosis to the dilemma of disclosure; from facing stigma to dealing with discrimination. It’s no wonder that depression and anxiety are experienced more commonly by people living with HIV — and often the symptoms are not obvious. Each time you see your doctor try talking about how you are feeling; your doctor can discuss the support services and treatment options available.
Good nutrition and good health go hand in hand for everybody. But for positive people, having a healthy diet is particularly important. A well-balanced, varied diet is one of the most effective weapons the body has to defend against illness. Choose a diet with an emphasis on fruits, vegetables, wholegrains and beans. Fish and lean meat both get the tick of approval, as do healthy fats found in olive oil, nuts and avocados.
While we’re talking health, remember to exercise regularly (30 minutes every day should do it) — it gets the blood pumping and reduces the risk of cardiovascular disease. It has also been shown to improve CD4 counts and increase a general sense of wellbeing.
O Overseas travel
For many people with HIV, travel is a regular part of life — whether for work, study or pleasure. In most cases, HIV is not a barrier to traveling. However, HIV continues to be heavily stigmatised in many countries. To avoid problems, it’s probably best not to disclose your HIV status unnecessarily — not to other travellers, customs or other immigration officials.
An HIV-positive woman can give birth to a perfectly healthy baby. As with sexual partners, the risk of transmitting HIV to your baby is greatly reduced when you’re on treatment. It is recommended that babies born to HIV-positive women are given antiretroviral treatment for some weeks after delivery to further reduce any risk of infection.
It’s important to be aware, however, that HIV can be transmitted via breast milk. Once again, this risk is significantly reduced when the mother is on ART. However, in Australia, it is advised that HIV-positive women avoid breastfeeding and instead formula-feed their babies. This is a discussion you can have with your healthcare providers.
If you are HIV-positive, stopping smoking is one of the most important steps you can take to improve your health. A recent study has found that the life expectancy of a 35-year-old smoker living with HIV is reduced by eight years. HIV-positive non-smokers doing well on treatment, however, were found to have a similar life expectancy to non-smokers in the general population. If you’re finding it tough to quit, some HIV organisations have programs in place specifically for HIV-positive people who want to stop smoking.
It’s important that you take your HIV medicine strictly as prescribed i.e. taking the correct dose at the right time. To help with adherence, keep your medication in a place where you will remember to take it; try to associate ‘pill time’ with other habits and routines — getting up, going to bed, meal times etc. Set the alarm on your mobile phone as a reminder. If you do happen to miss the occasional dose, don’t beat yourself up — you’re only human.
You may be worried that you may never have a sex life again. Be assured, a person living with HIV is able to enjoy an active and satisfying sex life. If you’re worried about the possibility of passing the virus on, there are a number of options that substantially reduce the risk of HIV transmission during sex.
- Correct use of condoms prevents HIV transmission. Condoms also prevent transmission of most STIs which can increase risk of HIV transmission and also compromise your health.
- Effective treatment can significantly reduce a person’s viral load until it is ‘undetectable’. If you have had a stable undetectable viral load for at least six months, taken your treatment consistently, and you and your partner have no other STIs, you can be confident you will not pass on HIV.
- Pre-exposure prophylaxis (PrEP) is used by HIV-negative people to prevent infection. It is a single pill that has to be taken daily. If used effectively, PrEP can dramatically reduce the risk of HIV infection.
- There is hardly any chance of passing on HIV through oral sex, however the risk increases if a person has cuts or ulcers in their mouth, has an STI or if the positive partner is menstruating.
- Having sex when you have your period can increase the risk of HIV transmission so it’s a good idea to consider using condoms during vaginal sex or dams during oral sex.
- If you think your partner has been exposed to HIV there is a course of treatment available to minimise the likelihood of them becoming infected with HIV. This is called post-exposure prophylaxis (PEP). It involves taking a course of antiretroviral drugs for a period of four weeks. Your partner will need to visit a doctor and commence PEP within 72 hours although treatment is more likely to be effective the sooner it is started. A national list of PEP prescribers is available here.
- If you and your partner are both HIV-positive, you may not want to use condoms. But remember, it is important to protect each other from STIs.
TasP — Treatment as Prevention — is one of the most significant advancements in the field of HIV prevention in recent years. Modern treatment is so effective that a person living with HIV with an undetectable viral load is unable to pass the virus on — even during condomless intercourse.
If you have an undetectable viral load it means your HIV medication is working successfully and that the level of virus in the blood is so low that it can’t be picked up in tests.
V Viral load
Your viral load is the measurement of HIV in your bloodstream. The lower your viral load, the better. You will be regularly screened by your doctor so as to ensure the treatment is working and that your viral load remains undetectable.
There are around 2,700 women living with HIV in Australia. While HIV affects everyone differently, women often face specific challenges. Gender impacts the progression of HIV infection, comorbidities, how HIV is treated, and a range of possible side effects.
HIV-positive women also experience a number of specific issues such as interactions with contraceptive and HIV medications, pregnancy and delivery, breastfeeding, menopause, increased risk of thrush, pelvic inflammatory disease (PID), and cervical cancer. A new website — womenlivingwell — is full of valuable, up-to-date information for women living with HIV.
HIV replicates and spreads throughout the body. HIV medicines are grouped into different drug classes according to how they fight the virus. There are six classes of antiretroviral drugs which work in distinct ways to make it difficult for HIV to reproduce.
How you deal with your HIV diagnosis will be unique to you. There is no right or wrong way. It may take you some time to work out how HIV fits with your sense of self or sense of ‘identity’. Talking to other positive people about their experiences and how they have coped can be useful. Contact your local HIV org for peer support.
Zidovudine was the first government-approved medication to treat HIV in Australia. However, the drug was extremely toxic and the side effects considerable. These days, HIV treatment works miracles allowing positive people from all walks of life to enjoy full and active lives.