What is HIV?
HIV stands for human immunodeficiency virus. HIV is a virus that infects certain white blood cells of the immune system. These white blood cells fight off infections. These cells have got several names: CD4 cells, CD4+ cells, T cells, helper cells or CD4 lymphocytes. HIV destroys CD4 cells and makes the immune system weaker over time. This puts a person at risk of other serious infections.
People who are infected with HIV are called HIV-positive. People who are not infected with HIV are called HIV-negative.
How people get HIV
Children can get HIV in the following ways:
- A woman infected with HIV can unknowingly pass it onto her baby during pregnancy, at birth or after pregnancy through breastfeeding. Some women do not know they have HIV until they are pregnant and get tested. If you are HIV-positive and having a baby, please visit our page that explains how to lower the risk that your baby will get HIV and how to find out if your baby is infected.
- Some children get HIV through blood or blood products that have HIV in them. This usually happens in countries where the blood supply is not tested. Some children also get HIV through contaminated needles or surgical equipment, if the surgical equipment and needles are not properly cleaned and sterilized.
- Children who have been abused can become infected with HIV.
Teenagers and adults can get HIV in the following ways:
- Unprotected anal, vaginal or oral sex with an infected partner can lead to HIV infection.
- Sharing needles that have been in contact with contaminated blood, such as in drug use, tattooing or body piercing.
- Some people can get HIV through contaminated blood or blood products, or through needles or surgical equipment that were not properly cleaned and sterilized.
Medication
When is the right time to start a treatment?
There are many factors that must be considered when you and your health-care team start thinking about treatment. Some of the main factors that need to be considered when deciding to start treatment include:
- your history (time since diagnosis, symptoms, other infections)
- your CD4 count (the number of CD4 cells in your blood)
- your viral load (the amount of viruses in your blood)
Starting treatment is not just about medical reasons. You have to commit to taking the medications all the time for them to work effectively. Talking with your health-care team, your support network and some of your peers living with HIV might help you decide whether to start a treatment.
If your health-care team thinks you should start treatment and you feel ready to do so, the next step is to choose the right treatment. There is no single best treatment combination. You and your health-care team need to decide on a combination that will work for you.
Three important words for you to remember as you learn to manage your HIV medications are:
- Efficacy: How well they work to lower your viral load and increase your CD4 count.
- Durability: How long they remain effective.
- Tolerability: How easy it is for you to take the medications, what side effects may occur and how serious they are.
For more information on specific medications, visit SickKids Positively Good 2 Go website.
How to take your medications
Each medication has different dosing and frequency. Your health-care team will tell you how and when to take the medication. The most important thing is to remember to take your medications and create a routine with reminders that will help you. Your medications will only work if you take them at the right time every day.
Sticking to the schedule (adherence) can be difficult but is important for your long-term health. Becoming more independent in managing your medications will help you prepare for adult health care. Here are tips to help you remember your medications:
- Write a list with the medications, time and date and tape the list to the mirror in your bathroom. You can also print this on a grid and check off each medication after you take it.
- Put the pill bottles where you will remember them at the time of day they are scheduled. For example, put your morning dose beside your alarm clock.
- Use a pill box (dosette) to help you organize and remember to take your medications.
- If you use a computer, download 'sticky notes' to have a reminder on your desk top.
- Set alarm times on your cell phone or mobile device to go off when medications are scheduled.
The importance of not forgetting to take your medications
Missing doses of medicines can allow the virus to replicate more easily. This will lead to an increase in the amount of HIV in your blood (increased viral load). When this happens, the virus can become resistant to the medication you are taking. This also risks your immune system being further damaged. A few missed doses can be enough for this to happen. If the virus becomes resistant to the medications you are taking, other antiretroviral medications that work in a similar way may also become ineffective.
Do NOT stop medications without speaking to your doctor first.
Side effects of HIV medication
Most people do not have side effects from the anti-HIV medication. When side effects do happen, they can range from very mild to very severe. Every medication has its own unique side effects but there are some common ones. For unique side effects, refer to the information sheets for each medication.
The most common side effects are:
- digestive problem (such as nausea, vomiting, loss of appetite, diarrhea and excess gas)
- rash
Some more serious side effects may happen, but are rarer. They include:
- allergic reaction
- lipodystrophy syndrome (a rare syndrome affecting the location of the body fat)
- liver toxicity (damage to your liver)
For more information on side effects, visit HIV and AIDS and Positively Good 2 Go.
Managing side effects
Always talk with your health-care team as soon as possible about any symptom you have. It may be a side effect of a medication. If the side effect is not too serious, waiting it out may be an option. Sometime side effects improve or go away on their own.
If the side effect is severe, or bothers you too much, the medicine may need to be stopped. Discuss your options with your health-care team before stopping any medications.
Make sure your health-care team knows all the medications and supplements (such as vitamins and herbal medicine) you are taking because sometimes side effects can be due to interactions between medications.
You should speak to your health-care team about possible side effects before starting any new treatments (including natural and herbal).
Medication interactions
Antiretroviral medications may have interactions with other medications. Other medications may lower or increase the effect of antiviral medications, or in some cases, the antiviral medication may lower or increase the effect of other medications.
Keep a list of all medications you are taking, including other prescription medications, medications that you can buy in the pharmacy without a prescription, and vitamins or herbal supplements.
HIV disclosure
Disclosure is telling others that you have HIV. You might feel like it is one of the hardest parts of HIV. It is a process and takes a lot of time and consideration.
You do not have to tell everyone about your HIV diagnosis. You may just want to tell some of the people who are closest to you. You also need to tell your doctors and other health-care providers, such as your dentist, to get the best care possible.
Disclosing to sexual partners is required.
There is no best way to disclose but thinking ahead is the first step.
Tips to help you decide who to tell, when and how
- Take the time to choose carefully who you tell. Make sure you are ready and you disclose your status for the right reasons. For example, disclosing your HIV status to sexual partners can be emotionally challenging.
- Pick a safe, comfortable place to talk. Disclosure should happen at a time when you and the person you are talking to are comfortable and in an environment where you can be open and honest.
- Prepare yourself as you can never know how others will react. Some people may react negatively, judge you or be mad at you. Some people may feel special that you trusted them enough to share such intimate information.
- Make sure they understand this is private. It is secret information not to be repeated to everyone.
- Discuss your plan with someone who already knows you and who can support you. This might be someone on your health-care team, family member or friend.
- Plan ahead.
In Canada, it is now the law that you must inform your sexual partner of your status before having sex. You may face criminal charges if you knowingly keep your HIV status from a sexual partner. Disclosure is one way of protecting yourself and your partner. To find out more information about legal cases related to disclosure visit www.aidslaw.ca.
If you feel you cannot disclose to someone, whether they are a partner or a more casual contact, then you should not have vaginal, anal or oral sex with them.
If you do not feel comfortable getting in touch with previous sexual partners, then in the province of Ontario, Public Health can notify them anonymously.
Sexuality and HIV
Decide when the time is right
The decision to begin having a sexual relationship is a complicated one no matter who you are. Because you and your partner are unique people, every relationship will be different. Here are some keys to healthy relationships:
- You and your partner feel good about the decisions you are making together.
- You can have fun with and without each other, and you can always be yourself.
- Decisions about being intimate are individual. Nobody can make these choices for you. Here is a checklist of questions to think about before you make your decision.
- How comfortable do you feel about becoming intimate with your boyfriend or girlfriend? How comfortable is your partner?
- Have you disclosed your HIV status to your partner or do you have a plan in place to make this disclosure before you have sex?
- Are you feeling pressured or is this decision mutual?
- Have either of you ever had sexual contact before? If so, perhaps you need to check for sexually-transmitted infections (STIs). Remember, some STIs will have no signs or symptoms.
- Do you have protection, which means condoms and lubrication? If not, how are you planning on getting them?
- What is your method of contraception? Remember, it is best to use condoms AND lubrication AND contraception.
- What is your timing? Where and when do you want to have sex?
- Have you talked about what kind of things you are okay to do, what things you do not like and what you would like to try?
Before you have any kind of sex, it is important to make sure that your partner has agreed. Either of you can say no at any time. Part of this consent includes disclosing your HIV status.
Safer sex choices
Safer sex is about keeping you and your partner healthy while also preventing the spread of HIV. Most sexual activity carries some risk of spreading sexually transmitted infections. To reduce the risk, make it more difficult for blood or sexual fluid to get into each other's bodies. Pay attention to your body and your partner's. Cuts, sores or bleeding gums increase the risk of spreading infections. Rough sexual activity also increases the risk. Even small injuries give STI germs a way to get into the body.
There are many different kinds of sex that you and your partner may want to try. Kissing, touching, watching each other masturbate and sharing sexual fantasies are all very safe activities.
It is important to remember to use a barrier to prevent contact with blood or sexual fluid.
Even if you and the person you are going to have sex with are both HIV-positive, it is still important to use safer sex practices. You could give each other different strains of the virus or other STIs.
Protection against STIs and contraception
1. Protection against sexually transmitted infections (STIs)
Protection against sexually transmitted infections (STIs) is all about creating a barrier that stops one person's bodily fluids (blood, saliva, semen and vaginal secretions) from getting onto or into someone else. Barrier methods protect both you and your partner from STIs. They include:
- the male condom
- the female condom
- the dental dam
2. Contraception (birth control)
Contraception is anything that stops a woman from getting pregnant. Many contraceptive methods do not protect against STIs. They work as birth control only, which is why it is recommended using both a barrier and non-barrier form of contraception. They include:
- hormonal-based contraception, such as the pill, the contraceptive patch, the vaginal ring or injection
- non-hormonal-based contraception, such as intra-uterine systems (IUS) or a diaphragm
- barrier methods such as condoms
For more information, check out sexualityandu.ca. Discuss with your health-care team the best barrier and birth control methods for you.
Substance use
Part of being a teenager is making choices about drugs and alcohol. You will be offered some of these at some point. You may want to take them, or you may feel pressured into taking them. There are risks, so you should never use drugs or alcohol if you do not want to. Drug or alcohol use can lead to legal problems, as drug use is illegal and alcohol consumption is limited by age. Drugs and alcohol can also affect your heart, liver and brain.
Interactions with medications
Alcohol or any other substance you take may interact with your medication, if you are taking any. They may decrease their efficiency.
Risky behaviour
Drug and alcohol intoxication can affect the way you make decisions about taking medications, unsafe sexual practices, driving and other behaviour. If you are using alcohol or substances, be safe. Protect yourself and the people around you.
Wear a MedicAlert bracelet. If you are in an accident, you want to make sure that the Emergency Department knows that you are on medication.
Transition into adult health care
When you turn 18 and become an adult, you will leave your child health-care team and you will transition into the adult health-care system. This means you will be responsible for taking care of yourself and you will have to make your own decisions. Think about this transition as a graduation rather than a transfer. To make it easier, it is best if you prepare yourself ahead of time. The Hospital for Sick Children provides tools to help you with this transition on its Good 2 Go website.
Transition tools
The following tools and resources can help you make sure you have the knowledge and skills you need to maintain your healthy lifestyle.
Readiness checklist
- How ready are you to move into the adult health-care system? The Readiness Checklist helps teens assess their readiness for transition.
- Access it yourself or talk to your health-care team about working on it together.
- There are also checklists for your parents and/or guardian if you think this might help them prepare for the change as well.
The three-sentence summary
The three-sentence summary helps briefly recap your health history.
- Sentence one states your age and your main medical problems (example: I am 18 and have had HIV my whole life. My most recent viral load and CD4 count were ... and these have been stable for the past ... months. I am otherwise healthy.)
- Sentence two states hospitalizations, your medications and any problems you are having with them (example: I had one hospitalization last year for an infection and am taking....)
- Sentence three states any current problems you are having (example: Everybody in my family is sick with a cough and I have it too.)
Being able to tell your health history in three sentences sends the message that you know about your health and that you can focus on what is important.
Follow up questions are common. This does not mean that you have left out important information, just that you have given enough information so that the provider knows what to ask next.
MyHealth Passport
It is a wallet sized card that lists your medical conditions, past procedures, treatments, medications, allergies and other health issues. The HIV/AIDS template has specific questions regarding HIV which make the passport very useful.
The first time you create a passport, work with your health-care provider who can provide you with accurate information.
It is a good idea to carry the passport with you at all times and show it to all providers. Email it to yourself to have an electronic version.
Getting Ready for Adult Care Booklet
This booklet helps you make sure you know all you need to know about your condition, your treatment and how to get ready for an appointment. It also helps you remember things and tell you where to find information.
Ask your health-care providers to help you find your future adult clinic.
Transition timeline
Now that you are actively thinking about transition, a good resource is the ID2 Ready, Set, Good 2 Go Timeline. This timeline can help you and your parent or guardian make plans about how you can become more independent in your family and support system, with friends and in relationships, at school and with your health-care providers.
First adult appointment
Making it to your first appointment in the adult system can be difficult. Your health-care team will help you decide which clinic or program will be right for you. Some of the things to think about when making this decision are:
- location
- type of clinic
- where your family and friends might go
- school or work plans
Touring your new adult clinic before the first appointment is sometimes possible and could be a good way to get ready.