Pre-fix: A guide for people with Hep C or HIV who inject drugs

How do you know if you have Hep C or HIV?

How does someone get Hep C or HIV?

Both Hep C (hepatitis C) and HIV pass through blood-to-blood contact (when blood carrying the virus gets into another person’s bloodstream). HIV can also be spread through semen (both cum and pre-cum), vaginal, front hole or anal fluids and breast/chest milk.

You cannot get Hep C or HIV from hugging, dry kissing, shaking hands or eating together.

Hep C can pass from someone who has Hep C to another person when sharing anything with blood on it, even if you can’t see the blood. The blood with Hep C must get into the bloodstream of the uninfected person for Hep C to pass. Hep C virus can live outside the body for many days. Hep C often passes when sharing needles. This includes sharing equipment to inject or inhale drugs or re-using tattoo or piercing equipment. Hep C may also pass when sharing razors, nail clippers, toothbrushes or earrings. It is rare for Hep C to pass during sex, but it can, especially during rough, condomless anal sex.

HIV can pass through sharing needles and other drug use equipment, and it can pass when equipment is shared for tattooing or piercing. HIV may also pass during condomless sex and during pregnancy, birth or nursing.

Sharing pipes is a part of some spiritual ceremonies. There is no research about the risk of passing Hep C and HIV when sharing a ceremonial pipe, such as the Aboriginal tobacco pipe, but the risk is likely very low.

There are ways to stop Hep C and HIV from passing from one person to another. Learning about these can help you protect yourself and the people you care about.

Tests for Hep C and HIV

The only way to know for sure if you have Hep C or HIV is to get tested. It’s a good idea to get tested for both Hep C and HIV if you haven’t already. You can have Hep C or HIV and not feel sick for many years. By the time you do feel sick, the virus has already done a lot of damage to your body. The sooner you find out you have Hep C or HIV, the more you can do to stay healthy.

The tests for Hep C are different from the tests for HIV, so you need to be tested for both viruses. If you are told the test result is “positive,” it means that you have Hep C or HIV.

If your test result shows you don’t have Hep C or HIV, it is still possible to get them in the future. If you have had Hep C before and cleared it, it is possible you could get it again. Think about getting tested regularly, every six months to one year.

Hep C testing: how does it work?

You need two tests to know for sure if you have Hep C. Both are blood tests. The first test checks for Hep C antibodies in your blood (Hep C antibody test). Antibodies are like flags that tell you if the Hep C virus has ever been in your body. If the first test finds Hep C antibodies, you need to get a second test to see if Hep C is still in your body, since some people can clear the Hep C virus without treatment. The second test is called the RNA test or PCR (polymerase chain reaction) test; it will tell you if you have the active virus. If this test is positive you have Hep C. Hep C testing is confidential. Anonymous Hep C testing is not available in Canada.

HIV testing: how does it work?

There are different kinds of HIV tests: standard blood tests, rapid blood tests and, in some places, oral swab tests. All tests check for HIV antibodies. Antibodies are like flags that tell you if HIV virus is in your body. A positive test result means that you have HIV. Your body cannot clear HIV on its own.

With standard testing, a blood sample is sent away to a lab and you should get the test result in about two weeks. With rapid blood testing and oral swab testing, the results of the test are available to you in minutes. HIV testing is available as confidential testing or anonymous testing, although anonymous testing is available only in some parts of Canada. You may want to talk about your options with someone you trust before deciding which type of test to do.

“I thought I had hepatitis C for 15 years. I never talked about it. I kept it hidden from my family and everything because I didn’t want them to know. When I got tested and I found out [I was negative] it was shocking but I was also happy because I didn’t have to go through the treatment.” Nancy

Confidential versus anonymous tests

Hep C and HIV are reportable infections. This means that a positive test result must be reported to the local public health unit. This section describes the amount of privacy with different types of testing.

Confidential testing means that the test can be linked to you either through your name or a code. Your test result will only be seen by healthcare workers who need to know. They are not allowed to tell anyone else without your permission, except for the local public health unit. If the test result is positive, your name and the result will be reported to the public health unit in your region for followup.

Public health workers will talk to you about informing people who may have been exposed to Hep C or HIV, such as people you have shared drug injection equipment with or your current or former sex partners. This is so these people can get tested for Hep C or HIV. Different options exist for telling these people, and it is possible to do so without identifying you or your status. Public health workers do this so they can help stop the spread of Hep C and HIV.

In smaller communities, where most people know each other, it may be difficult to get tested and not have people find out about your test result. If you can travel to a community where you know fewer people, you may want to get tested there.

Anonymous testing means that no name is put on the blood sample, clinic paper work or test results, so no one can identify you by looking at the test. A positive test result is reported to the local public health unit, but your identity is not reported. Anonymous HIV testing is available in some parts of Canada. Anonymous Hep C testing is not available in Canada.

Once a person with Hep C or HIV sees a doctor about their infection, it is recorded in their medical file that they have Hep C or HIV.

Hep C and HIV testing in Canadian prisons

Voluntary Hep C and HIV testing is offered to all prisoners on admission to a federal prison. Federal prisoners can also request to be tested. Testing may be offered in some provincial prisons.

If you get tested for Hep C or HIV while you are in prison, your test results will be available to prison healthcare and possibly to the local public health unit. If you think you may have been exposed to Hep C or HIV, you may want to get tested. Getting treated for Hep C or HIV will help you stay healthy.

If you want support or information before or after getting tested in prison, you can contact PASAN, an HIV and Hep C prisoner support organization. You can visit www.pasan.org or call collect 416-920-9567 or if you are in a federal institution you can call 1-866-224-9978. PASAN is on the Common Access list in federal prisons.

Bad veins and blood tests: things that help

Many of the tests for Hep C and HIV require blood to be taken. This can be hard if your veins are bad. There are some things you can do to make it easier to have your blood taken:

  • Show the health worker which veins are good to draw blood from.
  • If you feel comfortable, ask a health worker if there is a person on staff who is good at taking blood from damaged veins.
  • Get your body warm. This can make it easier to take blood. Take a hot bath or shower before you go to get a blood test. Keep as warm as you can on your way to the appointment. 
  • Drink two to three glasses of water a couple of hours before your blood test. This will make it easier to find a vein.
  • If these things feel hard or scary to do, bring a friend, peer or harm reduction worker to the appointment with you.
  • Try to save a vein for hospital emergencies or blood work.

If you take care of your veins, they can last a long time. To learn about how to inject in ways that keep your veins healthy, check out Safer Injection.

Finding out you have Hep C or HIV: what do you do now?

Finding out that you have Hep C or HIV can be hard. It’s normal to feel scared, angry, sad or hopeless. You may also feel like you are numb for a little while. You may use more drugs than you normally do, or you may decide to cut back or stop.

It may be hard to believe at first, but lots of people live long and healthy lives with Hep C, HIV or both. There is treatment that can cure Hep C that works for many people and medication for HIV that can keep you healthy for a long time.

“It gets better. That’s what people really need to know. When you first test positive, your whole life centres on it. That’s all you can think about, every minute of the day, all the time. But it gets better. I don’t think about my HIV on a daily or even weekly basis anymore.” Cindy

The first few days or weeks after you find out you have Hep C or HIV can be the hardest. Here are a few things that other people have found helpful after they got their test result:

  • Talk with a trusted friend, peer, counsellor or family member about how you feel. Try to find as many supportive people as possible.
  • Try to meet some people who have Hep C or HIV who will talk about their experiences. You may be able to meet someone at a local community health organization.
  • Find stories of people who have Hep C or HIV and how they managed. One source is The Positive Side.
  • Learn whatever you can about Hep C or HIV and what you can do to stay healthy.
  • Join a support group for people living with Hep C or HIV, if there is one in your area.
  • If you have access to the Internet, you may want to check out online support groups.
  • Try to remember that living with Hep C or HIV gets easier over time.
  • If you are a spiritual or religious person, your beliefs and spiritual community may be a source of support and strength during this time. 

Once you’ve found out you have Hep C or HIV, it’s a good idea to visit a doctor or nurse regularly so they can work with you to take care of your health. Even if you don’t feel sick from Hep C or HIV, the virus is attacking your body and causing damage. Treating the infection early will slow that damage and help you stay healthy. This may be hard if you’ve never had health problems before or if you’ve had bad experiences with doctors, other health workers or the healthcare system. Check Working with a doctor and other health workers for more info.

“Whoever tells you the news really needs to stress that your life is not over. If you’re using or drinking, you may rebel and go out on a bit of a bender after finding out, and you shouldn’t feel guilty or shameful about that. It’s important to know that your life isn’t over, but the reality is that there are some precautions you need to take now.” Cindy

Sharing your test result: to tell or not to tell

If you find out you have Hep C or HIV you may decide that you want to tell some people. It’s a good idea to tell your doctor or nurse so they can help you take care of your health. You may also want to tell a friend or family member so they can support you. In some cases you may want to keep the information private. For example, your landlord, parole officer or shelter staff worker does not need to know if you don’t want them to know.

Privacy and your rights

Under Canadian law you have the right to decide when, how and who you tell your health information to. There are some exceptions to your right to keep your health information private. For example, health workers must share test results for some infectious diseases with public health. The information can also be shared if there is a risk of you harming someone else or if the information is needed for a legal investigation or court case. If you think your health information has been shared without your permission, you may be able to file a complaint.

Are there times when you have to tell people you have Hep C or HIV?

Yes, if you have HIV you have a legal duty under criminal law to tell your sex partner(s) your HIV status before sex that poses a “realistic possibility of transmitting HIV.” It is not clear whether this legal duty would apply to sharing drug use equipment when you have HIV. It is also not clear whether people living with Hep C have any legal duty to disclose before sex and/or sharing drug use equipment.

If you have HIV and are having sex

In Canada, if you have HIV you have a legal duty to tell your sex partner(s) before having any kind of sex that poses a “realistic possibility of transmitting HIV.” People with HIV have been convicted of serious crimes for not telling their sex partners they have HIV. The law might evolve or be applied differently depending on available medical evidence in a particular case. But based on the current state of the law, it is safest to assume that you do have a legal duty to disclose your HIV status before having:

  • vaginal, frontal, or anal sex without a condom; and
  • vaginal, frontal or anal sex with a condom unless you have a low viral load (less than 1500 copies/ml.)

You do not have a legal duty to disclose before having vaginal sex if your viral load is low (or undetectable) and you use a condom. It is not clear whether this also applies to anal sex or frontal sex.

It is not clear how the law applies to oral sex.

Telling the person you want to have sex with that you have HIV can be hard, but it often gets easier the more you do it. If someone doesn’t want to have sex with you because you are HIV positive, that may be hard to hear, but they do have the choice. Just like you have the choice to say no to someone who wants to have sex with you.

“You just have to give people the opportunity to make up their mind about whether they want to have sex with you. If they don’t, there are still other people who will. I’m at the point where my self-respect and self-esteem can handle that rejection. You start to see it as a reflection of the other person, not you,” Cindy R.

If you have HIV and are sharing injection equipment

As far as we know, no Canadian court has yet decided whether an HIV-positive person who uses drugs has a legal duty to tell their HIV status to someone with whom they are sharing drug-use equipment (for example, syringes, needles and crack pipes or stems). Sharing certain drug-use equipment (such as needles and syringes for injecting) is a high-risk activity for transmitting HIV. Therefore, you may have a legal duty to disclose your HIV-positive status before sharing.

If you have Hep C

While the Supreme Court said the criminal law could be used to address non-disclosure before sex involving other sexually transmitted infections, it is unclear if this is true for Hep C. We are aware of at least one case of Hep C non-disclosure before sex which resulted in an acquittal (not guilty).

Sharing certain drug-use equipment (such as needles and syringes for injecting) is a high-risk activity for transmitting Hep C. Therefore, you may have a legal duty to disclose before sharing.

Discrimination and your rights

Discrimination is being treated unfairly simply because of who you are. As a person who uses drugs and has Hep C or HIV or both, you may experience discrimination because of some or all of these things. Some other reasons you may be discriminated against include ethnic origin, sexual orientation, gender, gender identity, age or disability. Laws have been put in place to prevent people from being treated unfairly. If you want to file a complaint about discrimination you’ve experienced in most cases you can usually do that with your provincial or territorial human rights commission.

Check out Legal issues from Managing Your Health for information on privacy, discrimination and HIV transmission and the law.

For more Hep C legal information, check out When is a person legally required to tell other people about his or her hepatitis C infection?