If you or someone you care about has been diagnosed with HIV, you probably have many questions. We hope to answer most of them: why and how it occurs, what the treatment options are, and how to live your life to the fullest despite the challenges HIV brings.
Information for people with HIV, their partners and caregivers
What is HIV?
Human immunodeficiency virus (HIV) is a virus that spreads from person to person through body fluids. The virus attacks your body’s natural defence system (the immune system).
How does someone get HIV?
People are most often infected with HIV through sexual intercourse or through shared intranasal or injectable drug use with shared equipment (needles, syringes, straws, drug preparation equipment). HIV can also be passed from a mother to a child during pregnancy and breastfeeding.
How does HIV become AIDS?
If left untreated, HIV weakens the person’s immune system to the point that it can no longer fight off serious infections. The risk of certain types of cancer can also increase. When a person becomes sick with these infections or these types of cancer, they are said to have “acquired immunodeficiency syndrome” or AIDS.
Is there a cure for HIV?
There is currently no cure for HIV, but medication can control the virus. Anti-HIV medication allows a person living with HIV to enjoy a long and healthy life—in many cases, as long as someone who doesn’t live with HIV. If medication is taken properly, it also lessens the risks of passing the virus along to others.
5 steps to take now
Remember that, if you take your HIV treatment regularly and lead a healthy lifestyle, your life expectancy will be the same as that of a person living without HIV.
A healthy lifestyle is the key: stop smoking, don’t do illicit drugs, lower your alcohol consumption, exercise regularly, keep a healthy and balanced diet, and be sure to maintain good sleep hygiene.
Be very selective in entrusting people with your HIV diagnosis. However, it may also be important to share this difficult moment with someone who you know will understand you.
Keep those around you healthy: use a condom every time you have sexual intercourse to protect others and to protect yourself.
Talk to a doctor with experience in treating patients with HIV.
Advice and stories from patients diagnosed with HIV
“I never really engaged in risky behaviours. I’m not one to party or do drugs—you know, all of the stereotypes associated with it. So, the diagnosis came as a shock.”
“I started the medication on Friday morning and I was violently sick throughout the whole day and night. And on Saturday, my doctor wasn’t available. I went to the pharmacy, which was situated in the same building where the clinic was, and I spoke with the pharmacist. I told her my concerns and that I didn’t know whether to go to the hospital or to the pharmacy. The pharmacist [helped me adjust the timings of the dosage]. I’m glad I did go to the pharmacy; she was very, very supportive and she told me what to do and not to worry.”
“Accept the diagnosis. Accept that things are going to change. But don’t give up: life does go on and things do get better. The good thing that came out of it is that I’m more careful in terms of my health: exercising, trying to keep fit, eating healthy. I feel that I have to be more careful, and, in the end, being more careful is not such a bad thing.”
“Ask a lot of questions. If you’re not comfortable with your doctor, switch over and find somebody with a good bedside manner.”
“I was diagnosed before I met my partner, and we’ve been together now over three years. When I first met him, I told him about my diagnosis. He’s not HIV positive, so it was really hard at the beginning. I was afraid of rejection. It had happened before. I was very honest with whoever I met, and sometimes it worked out and sometimes it didn’t. He had a hard time, and he needed time to think about it. Sure enough, he came back 24 hours later; he didn’t want to give up on us.”
“With [partners], it’s important to tell the truth; it’s best for everyone.”
“I’ve been undetectable for the longest time.”
Advice and stories from partners and caregivers
“He is monitored, like with any other illness, such as diabetes and other chronic illnesses. By adhering to the treatment, he lives well. We are always looking out for new [treatment] information, to see if they’ve discovered anything new.”
“I used to wonder, will he be more fragile, will he be more sensitive? But no. In fact, for more than five years, he’s been undetectable and his health is just like mine. When he catches a cold, it lasts the same as mine, same amount of time. You just need to monitor the illness well and take the medication. It’s very reassuring.”
“When I saw how destroyed he was [with the diagnosis], I told myself, I have to be supportive, I have to help him. I sort of put my own feelings aside in order to support him. But it’s not the kind of news you want to hear, ever, that’s for sure. It’s really terrible... The world stops turning.”
“If someone, say, a friend received this news, I would be the first to tell them that there’s nothing to worry about. It’s not like it used to be; things have changed a lot. I would give them the maximum amount of information on how we live with HIV and how things work, and show them that there’s absolutely nothing to worry about. You just need to monitor regularly and follow the treatment faithfully.”
“I was a bit scared at the beginning, but mostly for myself, because I’ve always taken care of myself, and I didn’t really want to date someone who was HIV positive. I never really dated anyone who had HIV, so I thought it was just like a terminal illness. But he explained to me more about the treatment that he takes, and I’ve actually met his doctor, too, who explained to me what it means to be HIV undetectable. So, things have changed, because I feel more reassured. I feel differently now. I think it’s more like any other person who is receiving treatment for diabetes or any other disease.”
“I’m still conscious about the disease, but less than before, because after talking to the doctor and knowing more about the treatment that he takes, I’ve been more reassured.”
How is HIV treated?
Everyone living with HIV should receive treatment to keep the amount of the HIV virus in their body (known as “viral load”) as low as possible. Treatment usually includes a combination of several anti-HIV or “antiretroviral” drugs often referred to as ARVs. These drugs prevent the virus from reproducing itself inside your body. If you take your anti-HIV medicines as prescribed, it lowers your risk of becoming sick or passing on HIV.
What happens if I forget to take my medication?
It’s extremely important to take your medication exactly as prescribed by your doctor. If you forget to take your medication, take it as soon as you remember, then continue according to your usual schedule. Ask your pharmacist about compliance blister packs, a medication packaging system that can reduce the risk of forgetting your pills.
If you don’t take anti-HIV medicine properly, your HIV infection may become resistant to the drugs, and the amount of the virus in your body (the viral load) will begin to rise again. This could cause potential damage to your vital organs—such as kidneys, heart or brain—by the process of inflammation. If your viral load becomes detectable, you also risk passing your HIV infection along to any sexual partners.
What about other medications I take—will the anti-HIV drugs affect them?
Speak with your doctor or pharmacist about every medication you’re taking—even over-the-counter pills and health products.
Once you start taking anti-HIV medication, be sure to speak with your doctor or your pharmacist before starting any new medications, prescription or otherwise.
If you use illicit drugs, some may interact with your anti-HIV medication. Talk to your doctor or pharmacist about them.
Are generic anti-HIV drugs just as effective as the brand-name ones?
Generic drugs in Canada are tested to ensure they deliver the same active ingredient, in the same dose and for the same length of time as their brand-name equivalents.
What’s on the horizon in terms of treatments or a cure?
Currently, several new anti-HIV drugs are being studied and developed. Some are:
- pills that have a better tolerability and drug-drug interaction profile than their relatives of the same class
- new classes of medication using novel routes to halt virus reproduction or to prevent the cells from being infected
- new ways of administering the drugs, such as implants or injections that can be performed weekly, monthly or even every two months
Unfortunately, we are still far from finding the real cure for HIV. The virus is very tricky and likes to hide in different cells and tissues of the body. We refer to the hidden virus as the “reservoir.” Even if a patient is treated and has an undetectable viral load, once he or she stops the anti-HIV treatment, the hidden virus sneaks out of the reservoir and restarts its devastation. Several approaches are currently being studied, including the use of cells infected by different genetically modified viruses like the cytomegalovirus (CMV), which then attack the cells infected with HIV and eliminate them.
As of today, one patient, known as the Berlin Patient, achieved a “functional cure” for HIV after undergoing heavy chemotherapy treatment with bone marrow transplant for his leukemia. This patient has been with no viral replication since his treatment in 2007.
Why do we call him functionally cured, rather than simply “cured”? We cannot call him cured, because he still has cells containing the HIV virus; however, his transplanted new cells (stem cells) do not contain the type of receptor, called CCR5, necessary for his type of virus. His cells contain only the CXCR4 receptor.
Essentially, imagine a very round, short person; a very tall, slim person; and a very tall, narrow door. The round person won’t be able to enter the room. This is what happened with the patient’s virus: the patient’s new cells have a “door” (receptor) that does not suit the shape of his existing virus, thus he has no viral reproduction and has achieved a functional cure.
What about my partner—are they now at risk of getting HIV, too?
Your sexual partner is at risk of getting HIV. Follow these tips to help prevent spreading the virus:
- If you don’t have a steady partner, always use a condom, even if your viral load is undetectable. You don’t want to contract a resistant strain of HIV or other sexually transmitted infections (STI), such as syphilis or hepatitis C, which might impact your immune system.
- If you are in a long-term relationship, make sure your partner is not at risk of getting HIV. First, make sure you get treated. If you take your HIV medication exactly as directed and have regular follow-ups with your doctor, your viral load will become undetectable within six months of initiating the anti-HIV treatment. Once your viral load is undetectable, if you continue taking your treatment and you don’t have or acquire any other STI, you are very unlikely to transmit the virus to anyone. The key is not to forget your anti-HIV pills and not to get any other STI.
- If you’re in a long-term relationship with an HIV-negative partner and you are in the first six months of treatment, your partner can benefit from pre-exposure prophylaxis (PrEP). PrEP is a treatment in which your HIV-negative partner takes a very specific anti-HIV medication proven to lower the risk of acquiring HIV from you. In clinical trials, PrEP was shown to be more than 90% effective in reducing the risk of acquiring HIV when used consistently. PrEP would only be indicated for your partner until you become undetectable and stay undetectable for at least six months with no other STI.
What if I’m pregnant—will my baby have HIV as well?
If you’re pregnant, or planning a pregnancy, know that HIV can be transmitted during pregnancy or breastfeeding. However, if you take your medication correctly, you can avoid passing the virus along to your baby—by some estimates, you can reduce the chance by 99%.
I feel like I should tell my family and friends, but I’m not sure—should I?
Many people are worried about whether or not to tell others about an HIV diagnosis. If you’re newly diagnosed, you don’t have to tell everyone immediately. Start with your partner, who needs to know. You may also want to talk with a close friend or family member.
If you don’t feel comfortable speaking with people you’re close to, you may prefer to speak with a healthcare professional or join a support group. The important thing is to make sure you don’t get isolated, especially in the first few weeks after your diagnosis.
- DO take your HIV treatment regularly as prescribed. This is the best way to keep your immune system strong and to prevent passing on the virus to someone else.
- DO keep healthy: lower your alcohol consumption, exercise regularly, keep a healthy and balanced diet, and be sure to maintain good sleep hygiene. Keeping your body healthy can help you prevent or minimize many of the effects of HIV infection, such as weight loss, loss of muscle mass and even stress or depression about your condition.
- DO use a condom every time you have sexual intercourse—for your protection and the protection of others.
- DO see your doctor regularly. Your doctor or HIV specialist can help you monitor your condition and ensure that your treatment plan is adjusted when needed.
- DO get support if you need it.
- DON’T despair: if you take your medication as prescribed, HIV will have a minimal effect on your life.
- DON’T get isolated, especially in the first few weeks after your diagnosis.
- DON’T start any new medications without speaking with your pharmacist.
- DON’T have unprotected sex: it could place you at risk of getting a resistant strain of HIV, which could cause your antiretroviral treatment to fail.
- DON’T smoke or do illicit drugs.
Whether you’re caring for a partner, family member or friend with HIV, there are a few things you can do to help them:
- Listen. An HIV diagnosis can feel like the world has been turned upside-down. Listen to their concerns and fears, as well as their hopes for the future.
- Educate yourself. If your partner has been diagnosed, you will need to take extra precautions to avoid getting HIV.
- Remember that they are the same person as before the diagnosis. They will still enjoy the same activities and should eventually expect to have the same hopes for the future. Your life together can get back to virtually normal, especially if the person follows the treatment plan.
- Help them take their medication as directed. This will ensure that HIV has a minimal impact on your lives.
Take care of yourself
- If your sexual partner has been diagnosed with HIV, you also need to get tested. If you test negative, talk to your doctor about ways to prevent exposure.
- Until your partner’s viral load has become undetectable, be careful to avoid any exposure to the virus—apart from sexual transmission, you also need to avoid sharing items like toothbrushes, razors, etc. Also, handle any exposed items with gloves.
- Get support if you need it. Sometimes you may need to talk about your own fears and concerns, and a support group can be very helpful in expressing your feelings without feeling guilty.
- Keep healthy. Taking care of your own health will ensure you can be the best support possible for your partner or family member when they need you.
Online and community resources
Your doctor, nurse, pharmacist or social worker can help connect you to resources and support that are available in your community. You can also explore these websites:
CATIE is a national non-profit that provides information and support to people living with HIV, caregivers, medical providers, AIDS service organizations and the general public across Canada. Information in English and French.
This is the official U.S. Department of Health and Human Services (DHHS) site featuring treatment guidelines, information on clinical trials and treatment issues, and links to US government HIV/AIDS resources. AIDSinfo is the result of a merger of two previous DHHS projects—the HIV/AIDS Treatment Information Service (ATIS) and the AIDS Clinical Trials Information Service (ACTIS).
POZ is a print and online publication for people living with and affected by HIV/AIDS.
Avert presents global information and education on HIV and AIDS from the United Kingdom.
This community-oriented commercial site features information on prevention and treatment, coverage of major HIV/AIDS conferences, online community discussion threads, and an extensive ask-the-experts feature. Its companion site, The Body Pro, offers information for healthcare providers.