Benefits of Treatment
HIV treatment is now approved for all people living with HIV (PLHIV) regardless of CD4 count. In addition, research has shown that commencing treatment as soon as possible after diagnosis is beneficial to your health and living well with HIV, as well as greatly reducing the chance of transmission. However, deciding when to start treatment is a personal choice that you should discuss with your doctor so that you can consider all the relevant factors and get all the information you need to make your decision. People benefit the most from taking treatment when they are ready to start and understand what taking treatment involves.
HIV treatments are now much easier and simpler to take. HIV treatments are made up of a combination of HIV antiretroviral drugs. Taking HIV medication has a positive impact on your health and the earlier you start treatment the better they will work for you in the long run.
Personal Benefits
“The personal benefit of taking treatment is that I can be sure I’m taking control of my health” TT, HIV positive.
There a range of personal health benefits that you will experience if you decide to start treatment for HIV earlier rather than later. The sooner treatment is started after diagnosis the bigger the impact the medication has on controlling the virus. Basically the medications help protect the immune system from HIV so that it can stay healthier for longer. The earlier treatment is started the less likely it is for you to experience having an illness related to HIV.
Another important personal benefit of starting treatment earlier rather than later involves the virus becoming undetectable and having what is known as an undetectable viral load (UVL). If you are unfamiliar with this term let’s break it down. Viral load refers to the amount of copies of HIV in the blood, or how active HIV is within the body. By taking treatments the viral activity is controlled and this in turn improves your immune systems functioning, so basically the lower your viral load is the better your immune system is functioning.
Now, the term undetectable viral load refers to a point at which standard blood tests used to determine how much HIV there is in your body cannot detect it anymore – this does NOT mean that HIV is no longer there, it just means that these tests are not sensitive enough to detect it. Research has shown that the sooner someone commences treatment the more likely they are to have an undetectable viral load. Having a sustained UVL, which is for a period of 6 continuous months, means that you can not transmit the virus to your partner during sex. To sum it up, the lower your viral load level is the healthier the immune system is, and if it becomes undetectable you won't transmit the virus onto you partner(s). So starting treatment earlier rather than later is much better for your health and the health of others.
Undetectable = Untransmittable (U=U)
Whilst it is really important to understand that there are a range of personal benefits to being on treatment and to commence treatment sooner rather than later, it is also important to know that by accessing treatment you are also protecting others. When people living with HIV are on treatments, there is a significant reduction in their individual viral load – often to the point where they may become undetectable. When someone who is living with HIV becomes undetectable they are unable to transmit the virus to others, so undetectable equals untransmittable. The sooner treatment is started then the greater the reduction in viral load levels and therefore everyone benefits.
For more information on U=U check out a fact sheet from Living Positive Victoria.
“Being on treatments takes away my anxiety regarding transmitting HIV. Allows me to be able to concentrate on other health and wellbeing aspects of managing living with the virus” Joel, HIV positive
I have concerns about HIV treatment...
There are many reasons as to why people may not feel ready to commence treatment. Commencing treatment is a personal choice and should not be forced upon anyone. The choice is completely yours! HIV treatments are most successful when you feel mentally ready to start taking them. This section is here to help provide some information so that you can make informed choices about your health. Below are common reasons why someone may not want to start treatment together with information that may help alleviate some of those concerns.
I'm not convinced
Some people remain sceptical about starting treatments and the benefits they have, especially if they feel healthy. Why should I start treatment when I am feeling healthy? This is a fair question. There is now a body of solid evidence showing that people benefit from early treatment. HIV treatment is now recommended for all people living with HIV as treatments are effective at stopping the virus from replicating and damaging the immune system. If treatment is started earlier rather than later this will improve your health outcomes, both in the short and long term. Early treatment can also be effective in lowering the amount of HIV in your body to below the level of detection, known as undetectable viral load (UVL). Having UVL also means that you can not transmit the virus during sex, whether condoms are used or not.
“Having an undetectable viral load reduces the risk of further damage to my body from the virus and enables me to be more relaxed about my chances of passing on HIV to a sexual partner”, David, HIV positive.
What about HIV stigma?
Some people do not want to take treatments because they feel that this will make them a target for stigma and that people will think of them differently. It is unfortunate that many people living with HIV still experience stigma in one form or another. Being on treatments should have no bearing on whether people will be stigmatising towards you. Being on treatments is a choice that you can make to control HIV and your health. Facing stigma regarding your status can be upsetting and confronting. Remember that having a great social support network is important and that speaking with people who understand your situation, be it a friend, someone living with HIV, a partner, a peer worker or a counsellor can be helpful.
What about the side effects?
Many people do not want to start treatment because they have heard about the side effects of taking medication to treat HIV. HIV medications have come such a long way over the past 30 years. Some people experience no side effects at all while others can sometimes experience mild to more severe side effects, but this is less common. The milder side effects are usually the result of your body adjusting to taking the medication and they are also commonly short term. The less common but more serious and persistent side effects can be managed by medication but it is important that you report any symptoms to your doctor and continue to take your HIV medication. There are several strategies your doctor will have to manage treatment side effects.
Do I have to take medication every day?
Some people say that they do not want to take medication every single day. However, HIV is a chronic manageable condition that needs to be controlled. This may require you taking a pill every day, and if it helps you improve your health and adds years to your life then isn’t taking a pill every day worth it?
Others think that remembering to take a pill once a day can be difficult as our lives can be busy with work, friends, family and many other things. There are devices and reminders that you can put into place so that you can be reminded about having to take your medication daily. Have a look at some of them here, these products can be used for reminders to take medications, vitamins or supplements – they are not HIV specific.
I'm fearful
Deciding to start treatment can be a daunting decision that some people may be fearful of. How is it going to work or how will I manage? Whilst not everyone has an easy time when they decide to start treatment, many people have found it liberating to take control of their health and to be in charge of HIV. It is also important to point out that thousands of people around Australia have HIV and take medication to improve their health. Talking about what you are experiencing, whether it is fear of what is to come or what you might expect if you were to start treatment can be very helpful. You can do this with someone you trust, like a friend, a doctor, a peer worker or a counsellor. Having a support network is extremely important for your mental and physical wellbeing and there are many people, social groups and organisations that can are willing help. Check out the support information below on what is available.
Treatments
HIV treatments have dramatically changed over time and can now offer people living with HIV a long and healthy life. The combinations of drugs that make up HIV medications or treatment regimens, which help keep the immune system healthy, can vary from person to person, as they can depend on a range of factors such as; how long you have had the virus before being diagnosed or what combinations of drugs works best for you without you experiencing any side effects. Most HIV treatments today involve taking a pill once a day with none to very minimal side effects. There are however a few combinations that involve a few tablets once or twice a day. It is up to you and your doctor to find a combination that is right for you.
"Taking my HIV meds has now become a habit – virtually as automatic as brushing my teeth. I take two tablets every morning when I wake up, and that’s it." Phillip, HIV positive.
There are a few really important things that you will need to know about taking HIV medications. The first is that you need to take the pill/s as they are prescribed. Taking your medications as prescribed is the best way to; maintain a healthy immune system, maintain an undetectable viral load and to keep disease progression under control. If you miss a few doses or decide to stop taking treatment you should discuss this with your doctor beforehand because resistance to the drugs can occur. Resistance is a term that refers to when HIV is no longer controlled by the medication, or in other words, it has become resistant to the treatment. The best way to conceptualise this is by imagining that your antiviral drugs can completely suppress HIV if you take them all the time, as prescribed. If you start to miss doses then the virus has a chance to start replicating inside you, causing damage to your immune system. If this occurs, then you will have to change the medication that you are taking and this may end up resulting in a more complex combination of drugs, not to mention potentially triggering a significant deterioration in your health.
Your doctor will help you decide on a treatment combination that best suits your lifestyle and they can also offer information and strategies to help you to take your medication all the time, as prescribed. Information and support can make adherence to your drug combination easier and therefore help you avoid any type of resistance. The best outcome to maintain a healthy lifestyle, maintain adherence and avoid resistance is to take control of your treatment and get mentally ready to start treatment, and this can happen by taking control and getting to know all the facts.
Side Effects
The issue of side effects varies with different people. Some people may experience no side effects at all while others can experience mild to more severe side effects, but this is less common. The milder side effects are usually the result of your body adjusting to taking the medication and they are usually short term. The less common but more serious and persistent side effects can be managed by other medications or diet/lifestyle changes. It is important however that you report any symptoms to your doctor and continue to take your HIV medication while you sort it out. When commencing treatment, it is important that you are monitored closely for the first few months to check and see that the drugs are not having any unwanted side-effects that you may not notice. Your doctor will recommend some regular blood tests to ensure that they are working properly. If side effects become apparent or are more severe and persistent, then you and your doctor can talk about potentially changing treatment regimens.
Ask your Doctor
When deciding to start treatment one of the most important factors influencing the success of taking HIV treatments is your relationship with your doctor. It is best to see a doctor who is classified as an S100 prescriber. S100 prescribers are medical specialists who are specifically trained about HIV and associated treatments. You need to feel comfortable speaking openly and honestly with your doctor and for them to be someone who supports you and your treatment decisions.
“It is so important to my own well being knowing I can discuss anything I am concerned about” Max, HIV positive.
When deciding to start treatment there is a list of questions that may help you out if you wish to chat with your doctor about HIV and about taking treatments:
- What are the best available treatments?
- What is involved in taking medications?
- What side effects will occur from taking medication?
- How do I recognise if I am having a side effect from the medication?
- What are the short term/long term consequences of taking treatment?
- What happens if I miss a dose?
- What else can I do in conjunction with taking this medication to help my body fight the virus?
- What effect will alcohol, smoking or other illicit drug use have on my HIV or my treatment?
- How do I keep track of any physical developments related to my HIV?
- What will happen if I don’t take treatment?
- What if I have other chronic conditions (i.e., diabetes etc)?
FAQs
Why should I treat HIV earlier rather than later?
It is better to start HIV treatments earlier rather than later because they can have a better impact on your health, and help you live a longer and healthier life with HIV. There is also the added benefit of reducing your viral load, or the amount of HIV in the body, which has an impact on whether HIV can be transmitted during condomless sex.
What are the side effects of taking treatment?
Side effects vary from person to person. Some people experience no side effects at all. Some people do experience side effects that can often be short term and mild because the body is getting used to taking HIV medication. For a few people, the side effects can range from mild to severe, and they differ from person to person. If you do experience any side effects it is best to chat with your doctor about them to see whether other types of treatment may avoid you experiencing side effects.
What does taking HIV treatment involve?
Taking HIV treatments usually involves taking one pill a day, however depending on several factors, such as how long you have had HIV and what treatments you may have already had, you may have to take two or more pills maybe once or twice a day. Your doctor will be able to explain what is involved in taking medication, but the important point is that you take the medications as prescribed so that no adverse reactions occur such as resistance, whereby the medications stop working and the immune system can become compromised.
Why should I take treatment if I feel healthy?
Untreated HIV is a progressive condition, you may feel perfectly well, but if your HIV is untreated it is doing damage to your immune system every day. If untreated, over time, HIV can destroy a healthy immune system, leaving you vulnerable to a wide range of HIV related diseases, also known as an AIDS defining illness. Many of the conditions associated with AIDS are life threatening. Research has shown that taking treatments for HIV, regardless of whether you feel healthy or not has a positive impact on your health outcomes, especially in the long term because they help to keep your immune system healthy.
Can I still have sex if I am not on treatment?
Yes, you can still have sex if you are not on treatment, but without treatment your viral load may be high, which means that passing the virus on can be more likely if you do not use condoms or if the condom were to break or slip off.
What does having HIV mean in the long term?
HIV is now a manageable chronic condition. It is no longer associated with life threatening illnesses and death the way it was decades years ago. This is because there have been enormous advances in HIV treatments. Someone who becomes HIV positive and decides to start treatment earlier rather than later can live a very long and healthy life.
What if I stop taking my treatment?
If you stop taking your treatments then your body has no protection against HIV, the virus will start reproducing and gradually destroy your immune system leaving you vulnerable to a range of very serious opportunistic infections that can be fatal. In addition, if you stop treatments then it is possible that you may become resistant to the medication if you start it again, meaning you may have to try different or more complex treatment regimens. If you are considering stopping treatment, then you should first speak with your doctor so that you can be informed about the risks.
Living with HIV
HIV Stigma
Unfortunately, many people living with HIV experience stigma in one form or another, regardless of whether this is with people who you love, people you work with or people you have sex with. Despite advances in HIV awareness, there will always be people who remain ignorant or uneducated, and this can manifest itself both directly and indirectly. Facing stigma regarding your HIV status can be upsetting and confronting. Remember that having a social support network is important and that speaking with people who understand your situation, be it a friend, someone living with HIV, a peer worker or a counsellor can help you deal with HIV related stigma.
“Stigma is everywhere. It is how we respond to stigma that matters in life. We are all born as equals” Nathan, HIV positive.
Sex and HIV transmission
Whether you are HIV positive or HIV negative, sex is an important part of life and relationships. Everyone can enjoy a very happy and fulfilling sex life regardless of what your HIV status is. Sometimes HIV positive individuals can feel that they may potentially be putting their partners at risk when engaging in sex where transmission is possible. However, there are ways to help reduce these feelings of anxiety or worry. There are a range of risk reduction strategies that both positive and negative individuals can use to guard against the risk of transmission; and not just of HIV but other STIs too. This may include:
- Condoms and water based lube;
- Viral load, which refers to the amount of the virus within the blood. Having an undetectable viral load refers to when someone who is HIV positive has been able to reduce the amount of HIV in their blood to a level that is ‘undetectable’ by current day tests and this reduces the risk of transmission to zero percent during condomless sex. It is the most effective tool in HIV prevention;
- Sero-sorting, which refers to when two people of the same HIV status engage in condomless sex, which eliminates the possibility of HIV transmission;
- Strategic positioning, which refers to when the negative person takes the insertive or fucking role, and the positive person takes the receptive role, or is the one being fucked.
- PrEP, which stands for Pre-Exposure Prophylaxis. This is when the negative partner uses antiretroviral medication to protect them against contracting HIV. It is the next most effective prevention tool besides UVL.
To find out more about these risk reduction strategies and why some reduce the risk more than others or why they may not work at all, head to Top2Bottom.
To find out more about PrEP head to Thorne Harbour Health’s PrEP Information Page.
If you do feel uncomfortable about engaging in sex because you are worried about transmitting HIV, there are a range of other behaviours that you can engage in where the risk of HIV transmission is eliminated. HIV positive and HIV negative individuals are in charge of their own sexual health, so using these risk reduction strategies should help to reduce the risk and any fear that either partner may be feeling regarding HIV transmission.
Co-infection and STIs
In recent years, there has been a small but significant increase in people living with HIV also having Hepatitis C, although this has been primarily amongst HIV positive gay men. Whilst Hepatitis C is most commonly transmitted through injecting drug use it is important to note that it can be transmitted through condomless anal and/or vaginal sex where blood is present. Evidence has suggested that HIV worsens hepatitis C related illnesses, and thus it is important to get regularly tested for Hepatitis C if you are HIV positive. Having HIV can also make treating Hepatitis C more difficult and the disease can progress more aggressively, so if you have both HIV and hepatitis C (known as co-infection), the monitoring of treatment for each is more involved and will require a specialists’ knowledge and attention. Having a regular sexual health check up is very important. Some STIs do not show symptoms and therefore you may have an STI and not know it. Whilst condoms are an effective prevention strategy, they are not 100% effective against all STIs. So the general rule is; the more partners you have the more regular your sexual health check-ups should be, ideally every three months.
Disclosure
Telling people that you are HIV positive is a very personal decision. You cannot know for sure how people are going to react. They may be shocked, concerned, scared or confused. Being open about your HIV status is completely up to you. You decide who you want to tell, when and how. It is important to have people that you can talk to about being HIV positive, but it is also important to think about whether they might tell someone else without you wanting them to, and if so what that may mean for you. If you think that someone may react badly then you may want to wait until you are more confident and think that you can handle it. There are some simple questions that you can ask yourself when deciding to disclose to someone about your status:
- Can I trust you with this information?
- Will you offer me the support that I need?
- Will you be able to accept this information without judging me?
- And will you respect my privacy and be able to keep this confidential?
“I chose carefully whom to tell, so feedback was always positive and compassionate” unknown, HIV positive
The other thing to consider is that once you have disclosed, the person you told may need to debrief with someone about how they are feeling with the situation. You can always suggest a few other people such as peer workers or counsellors that they can speak to, as they can do this without breaking your privacy and trust. If you can’t figure out who to speak with from your social network, then it might be best for you to start talking with a peer worker or counsellor, you can run through different scenarios and how you would handle another persons’ reaction to your disclosure. If you do not want to tell anyone you don’t have to, it is completely up to you. However, having a good social support network and being able to talk to someone about what you are going through can be important to both your mental and physical wellbeing.
Disclosing to partners
If you are in a relationship but haven’t told your partner about your HIV diagnosis, you need to think carefully about where, when and how you want to broach the subject. Your HIV status may come as a shock to them, and they may be confused or scared. In some instances they might also want to be tested for HIV. Just remember that there is support out there for you to work through this process.
It is important not to delay telling your partner for too long as the longer you leave it, the more difficult and complex it may become. Some people react badly to the idea that their partner has been keeping their HIV diagnosis a secret from them. However remember that you need to feel comfortable and ready when you decide to share the news of your HIV status with them.
In relation to sex, whether with a regular or casual partner(s), the laws about disclosure differ between states. Here in Victoria, if you are HIV positive and use condoms then you do not need to disclose your HIV status. Unfortunately, some people are rejected as sexual partners when they disclose their HIV status. There are several reasons as to why someone may reject you based on your status and this may have an impact on your mental wellbeing. Remember that having a great social support network around you can help you deal with some of these feelings.
“There’s always a little bit of HIV related stigma when disclosing, but part of being open with your status is you become an educator” Campbell, HIV positive.
Illicit drug use and HIV medication
Many party drugs like ecstasy and ice can sometimes interfere with the ability of HIV medications to work properly. However, there is really only a very limited amount of knowledge regarding how HIV medications and illicit drugs actually interact. There are a few things to consider if you intend on taking illicit drugs whilst you are taking HIV medications:
- Avoid taking HIV medications and illicit drugs at the same time.
- Some HIV treatments slow down the body’s elimination of recreational drugs, which can cause dangerous or even fatal interactions.
- Some recreational drugs lower the levels of HIV treatment in your blood so less of the dose is absorbed.
- As a general rule you should start with a smaller amount of any illicit drug and monitor for unusual responses.
- You should also speak with your doctor frankly about the fact that you may at some point use illicit drugs so that you can talk through what some of the chemical interactions may be, and they can point out some of the warning signs of a negative interaction.
Adherence
It is extremely important to take HIV medication as prescribed. By adhering to your treatment regimen you will have the best health outcomes achievable and also be able to prevent the development of drug resistance, which is when the medication stops working against HIV. This occurs mainly when people stop their medication and the virus then has the ability to adapt so that the medication cannot protect the immune system. If you don’t adhere to the treatment regimen then you may need a more complex, complicated and involved treatment regimen.
Support
It is very important to have a strong support network. This network could be made up of family, friends, your partner(s), peer workers, your doctor, a counsellor or anyone that you feel can help you out if you needed it; and whether that is a brief chat or an in depth discussion about something that is concerning you. Evidence has shown that having a strong support network improves a person’s mental health and wellbeing along with helping them to maintain adherence to their treatment regimen.
“My family have been great, close friends have been amazing” unknown, HIV positive.
There are a range of organisations, peer education workshops and social groups that you can connect with to get the support you need. They can provide you with information, care and support. Getting support can be critical to your overall health and wellbeing. You can find the support you need from the list of organisations and services below:
Thorne Harbour Health
Thorne Harbour Health provides counselling, support and a range of services for people living with HIV. This includes peer-based support for people newly diagnosed, available at the Positive Living Centre and from the Community Support Program.
Living Positive Victoria
Living Positive Victoria is the peak advocacy organisation for people living with HIV in Victoria and provides support and a range of services for people living with HIV
http://www.livingpositivevictoria.org.au/
Positive Women Victoria
Positive Women Victoria provides advocacy, support and a range of services for women living with HIV in Victoria
http://www.positivewomen.org.au/
Harm Reduction Victoria (HRV)
HRV is a peer based support service dedicated to providing advocacy and support for people using illicit drugs to help reduce the risks associated with their usage
Australian Federation of AIDS Organisations (AFAO)
AFAO is the national federation for the HIV community response.
National Association of People living With HIV/AIDS (NAPWHA)
NAPWHA is the peak national agency representing community based groups of people living with HIV in Australia.
Clinics & GPs
This is a list of high case load clinics, or clinics that work with HIV positive people. These clinics are staffed with S100 prescribers, medical practitioners who specialise in HIV and can prescribe HIV treatments. Below these clinics is a link to a list of the S100 prescribers in rural and regional Victoria, along with those in other states and territories. Having an open and honest trusting relationship with your doctor is very important and the clinics listed below are staffed with doctors who have had many years’ experience in HIV medicine.
The Centre Clinic
77 Fitzroy Street (rear entrance),
ST KILDA, 3182
(03) 03 9525 5866
Prahran Market Clinic
Prahran Central – Mezzanine Level
Corner Commercial Road and Malvern Road,
PRAHRAN, 3181
(03) 9514 0888
Melbourne Sexual Health Centre
580 Swanston Street,
CARLTON, 3053
(03) 9341 6200
Northside Clinic
370 St Georges Road,
NORTH FITZROY, 3068
(03) 9485 7700
National HIV Specialists
Here is a link to all of the HIV specialists in Australia. Check out your state or territory for a listing.