Reclaiming Our Health: A resource by and for Trans, Two-Spirit, and Non-Binary Youth
We believe that all youth, including those of us who are Trans, Two-Spirit, and non-binary (T2SNB) have the right to accessible and affirming information about our sexual health. Institutional barriers that our communities face have made knowledge on how HIV and Hep C relate to us harder to access, and in some cases, non-existent. The information in this booklet has been developed by community members, including past and present YouthCO staff, volunteers, and program participants who are Trans, Two-Spirit, non-binary, living with HIV and/or Hep C.
Each of us has a unique relationship with our bodies, sex, and sexuality. For many of us, the words used by others for our bodies and their functions are not the words we use for ourselves. We know that we have not used words in this resource that reflect everyone in our communities. We have tried to be as expansive with our language as we know how to while being as specific as possible about the ways that HIV and Hep C can be passed.
Language and experiences are ever-changing and evolving, so we invite feedback about the language we have used in this book so we can continue to make this information more accurate and accessible. You can reach the YouthCO team at [email protected], or give us a call at 1-855-968-8426!
HIV stands for Human Immunodeficiency Virus. It affects only humans and weakens the immune system by targeting CD4 cells. It can be treated with antiretroviral medications (ARVs), that reduce the impact it has on our bodies. Currently, there is no cure for HIV. ARVs can make it possible to live with HIV for many decades.
AIDS stands for Acquired Immunodeficiency Syndrome. It may develop if we have had HIV for years and are not taking medications. It is preventable with HIV medications.
There are more ways HIV cannot be passed than ways it can be passed. HIV can not be passed by simply touching, hugging, kissing, sharing a meal, or sharing cutlery.
HIV dies quickly when it is exposed to oxygen; it can only live about 30 seconds outside the body. In order for HIV to be passed, it needs direct access to our bloodstream. There are three ways this can happen:
- A needle injection to the bloodstream
- Fissures (small tears in soft tissues caused by friction)
- Receptor cells that are located in our soft and squishy bits (our bum, front hole, vagina, and the tip of a strapless, or penis)
* There is no information available yet on how HIV is passed for folks who have accessed bottom surgery. However, we know that our body parts can still get fissures if we do not use enough lubrication.
Only a few body fluids can pass HIV:
- Semen and pre-cum
- Rectal fluid
- Front hole fluid and vaginal fluid
- Human milk (also known as chest or breast milk)
There are only a few activities that can allow HIV to be passed:
- Sharing injection equipment that may come into contact with our bloodstream
- Having sex that involves inserting a strapless or penis in a bum or front hole or vagina without prevention methods
There are other activities that have a lower chance of passing HIV:
- Giving oral sex to a strapless or penis
- Sharing a prosthetic or sex toy without a condom
- Giving birth and nursing (chest or breast feeding)
Hep C, or Hepatitis C, is a curable virus carried in the blood that impacts our livers.
Hepat (liver) + itis (inflammation) = Hepatitis
The liver is our largest internal organ. It helps us fight infections, cleans our blood, and has hundreds of other functions. We can’t live without it.
* Hep C is different from Hep A and B. Hep A and B both have vaccines, which youth can often access at no cost! There is no vaccine for Hep C, but today’s medications can cure Hep C with minimal side effects.
Without treatment, Hep C will destroy our liver cells one at a time, causing damage to our liver over time. This liver damage can impact our overall health over years.
The damage to our liver cells causes scarring, which might worsen over time. In the most severe cases, untreated Hep C can lead to liver failure or liver cancer. We can live for 20 to 30 years without knowing this is happening.
Hep C treatment can cure us of the virus and prevent the most severe forms of liver damage.
Acute Hep C (0 to 6 months):
The first few months we have Hep C are called the acute phase. For up to 25% of people, our bodies cure Hep C on their own during this phase. We may have had acute Hep C in the past without knowing it.
Chronic Hep C (6 months to 20+ years):
Chronic Hep C is when the virus has been in our bodies for over 6 months. At this point, Hep C can only be cleared with medications.
It only takes a super small amount of blood with Hep C to pass the virus. It is important to know that Hep C can live for about 4 days outside the body, and for several weeks inside a needle and syringe. Hep C has been found in semen and rectal fluid among people living with both Hep C and HIV, even when blood is not present.
Hep C cannot be passed through casual contact like hugging, kissing, sharing toilet seats, sharing utensils, or nursing (chest or breast feeding).
In order for Hep C to be passed, it needs direct access to our bloodstream. It can only get there through:
- Burns and sores
- Fissures (small tears in soft tissues caused by friction)
- A needle injection
We can come into contact with Hep C when doing the following:
- Sharing injection equipment for drugs, hormones, or silicone
- Sharing pipes, straws, and other drug works
- Sharing tattoo or piercing equipment
- Having some kinds of penetrative sex without condoms
Now that we know what HIV and Hep C are and how they are passed, this section provides some ideas and tools that we can use to take care of ourselves and each other, and to reduce the impacts of HIV and Hep C in our communities.
It is important to note that as T2SNB youth, we may face challenges accessing some of these options. Even if we do have access, we may be in situations where we might not be able to use them or might choose not to use them.
As T2SNB youth, we also know that having access to the right supports makes navigating the challenges of transphobia, HIV and Hep C a lot more possible. Our goal at YouthCO is to support other youth in getting the information and support we need to make the choices that work for us!
Knowing our status is really helpful in figuring out how to best take care of ourselves, our partners, and our friends. The only way to know our HIV or Hep C status for certain is to get tested!
Both HIV and Hep C are tested for with a blood sample. Testing is usually available at youth clinics, sexual health clinics, and health centers. We are able to request a test from our doctor as well. We can find a testing site near us at www.youthco.org/test.
When accessing testing for sexually transmitted infections (STIs), our healthcare provider may ask about our sexual and drug use practices to decide what tests to give us. These questions may be personal, hard to answer, and not gender-affirming. Often times, the decision to test us for HIV and/or Hep C is based on stigmatizing ideas and misinformation. If we know we want to get tested for HIV or Hep C, stating or insisting that we want and know we need to get tested may help get our needs met.
If we test positive, we may have lots of feelings and questions all at once! Finding support that is right for us, such as peers, culture, or a clinic, can help us take care of ourselves.
Medications may be part of how we take care of ourselves, whether or not we are living with HIV or Hep C. If we are living with HIV or Hep C, a health care provider will help connect us to medications that are right for us. There is medication we can take if we are HIV-negative to prevent HIV. There is not medication that we can take to prevent Hep C. We get to make our own decisions about whether or not to take medications when it comes to HIV, Hep C, and our other health needs. When making decisions about taking medications, we may want to consider benefits and potential side effects, our relationship with our doctors, and if we are able to share that we are taking HIV or Hep C medications with other people in our life.
It is possible to take HIV and Hep C medications at the same time as hormones or other gender-affirming care. Some health care providers may not know that the hormone replacement therapy that some T2SNB folks are on is possible to take alongside most Hep C and HIV medications. Healthcare providers should not refuse us HIV or Hep C medication based on our use of gender-affirming hormones. We may need to monitor our liver and kidney function more closely while taking treatment, and/or take different hormones to avoid interactions with certain medications. It is always our choice if we want to do this or not. It is also important to know that if we are looking at HIV or Hep C medications, we may want to talk to our doctors if we may become pregnant or are pregnant now. These medications can impact our pregnancy and the development of the baby.
For over 95% of people, treatments will be able to cure us of the virus. For most of us, treatment lasts between 8 and 12 weeks. Treatment is made up of pills taken every day for 8 to 12 weeks. If we come into contact with Hep C again, we could get Hep C again and need treatment. Whether or not we are ready for treatment, we can reduce the impact of Hep C on our bodies by drinking less alcohol, reducing our drug use, smoking less, eating fruits and vegetables as much as possible, being physically active, getting enough rest and sleep, and accessing a healthcare team that supports our sexual, mental, and physical health. We can also take care of ourselves and be cared for by connecting to our culture and our communities.
If we choose treatment, we may want to plan for common side effects like tiredness, headaches, and nausea. We may also want to consider that some Hep C treatments can be harmful during pregnancy, and that some may interact with other drugs or medications we’re taking and cause more damage to our livers and other parts of our bodies. Depending on our drug or alcohol use, we may be able to take Hep C treatment while using. Some doctors may not want to give us Hep C treatment while we are using drugs because of stigma. That’s not okay! If that’s happening to you, get in touch with Help4Hep or YouthCO.
For some of us, many of the recommended aspects of treatment, such as eating fruits and vegetables, may be inaccessible or impossible. There are many reasons these options may not work for us, especially if we don’t have a steady income, stable housing, or access to support networks. Some HIV and Hep C clinics are able to offer practical support connecting us to services that may be able to help us with accessing treatment. YouthCO can be a good place to connect with if we don’t know where to go for this kind of help.
The medications we use to treat HIV are called antiretrovirals (ARVs). ARVs work best when taken every day at the same time. They make it a lot harder for HIV to make copies of itself and this makes ARVs an option if we are or are not living with HIV. If we are living with HIV they reduce the amount of HIV we have in our bodies. The lower our viral load, the less HIV can harm our immune system. If we are able to take ARVs regularly, they prevent HIV from developing into AIDS. If our viral load becomes very low, we cannot pass HIV on to our sexual partners.
If we are HIV-negative, post-exposure prophylaxis (PEP) can be taken after we have come into contact with HIV. PEP involves taking ARVs every day for 30 days, starting as soon as possible (within 72 hours or less) of coming into contact with HIV. PEP is available at emergency rooms throughout BC. It may also be available at some specialized clinics. Staff at emergency rooms or other medical settings may be unaware that PEP is something that we may need and have a right to access. YouthCO may be able to help us find PEP or advocate for us to get PEP if the staff we encounter are not aware.
If we know that we may come into contact with HIV on a regular basis, we may want to use pre-exposure prophylaxis (PrEP). Using PrEP means we take a pill on a daily basis or intermittently before and after activities where there is a possibility of coming into contact with HIV. This medication dramatically lowers the chance of becoming HIV positive if we come into contact with it.
At YouthCO, we want to work with youth who want PrEP to get it! It can be challenging to navigate the healthcare system around this at times, and we can help!
PrEP is prescribed based on provincial guidelines. A healthcare provider is responsible for assessing whether we fit into these categories and if we would benefit from PrEP based on our sexual and/or drug use practices. If we meet the guidelines, we are able to access PrEP for free. PrEP is free for most people who live in BC, including those of us who are refugees or Indigenous, whether or not we have status. PrEP is available for free if we are men who have sex with men, transgender women, heterosexual people who have partners living with HIV, and people who use injection drugs.
Learn more at www.youthco.org/prep.
The PrEP guidelines do not recognize the identities, bodies, and experiences of all T2SNB youth. At YouthCO, we think that PrEP should be made available to all youth who need it, and that youth know our needs best. We encourage T2SNB youth to get our needs met in the best ways we know how, and to contact us for support.
Whether we are taking meds for treatment or prevention, there may be times we forget to take our meds or skip taking them. We may or may not have control over this. If we miss doses of our medication regularly, it may change how HIV or Hep C medications impact our body. We may want to talk to our doctor, find someone who shares our experience to get support from, and/or change our approach to medications.
Condoms are a way to prevent HIV, Hep C, and other STIs from being passed during any form of penetrative sex. They can also prevent pregnancy.
There are two kinds of condoms that we can use:
- External condoms: can be placed on a penis, strapless, prosthetic, or sex toy.
- Internal condoms: can be used in a front hole, vagina, or bum. These can be worn for up to 8 hours and be used by people of any gender, but are unfortunately branded as "female" condoms.
We know that sometimes T2SNB people are unable to negotiate condom use with our partners because we may not know what words to use or may be afraid of what might happen if we do. Condoms are not the only option we have—PrEP, treatment, and getting tested regularly are also great options to take care of ourselves.
Using our own new supplies can prevent HIV and Hep C from being passed. Here are a few tips for each.
Whether we’re injecting drugs, hormones, or silicone, using our own new injection supplies can prevent HIV and Hep C from being passed. Hormones and silicone are not commonly injected into a vein like drugs are, so this is a less common way for HIV to be passed. Hep C may be passed by hormone or silicone injections. Even small amounts of blood that we cannot see on a needle can introduce a high chance for Hep C to be passed.
Pipes & mouthpieces:
Sharing a pipe to smoke drugs can cause our lips to crack or burn, providing direct access to our bloodstream.
• Chapstick or vaseline can keep our lips from cracking and burning.
• Chewing gum before and after smoking can help keep our mouths moist.
Straws & bills:
Snorting drugs can irritate the nose, create fissures, and provide direct access to our bloodstream.
• Cutting a straw into multiple smaller straws allows each person to have their own straw.
• Sniffing water before and after snorting will help take care of our nose.
YouthCO can help connect us with HIV and Hep C related information, health services, and community support.
Trans Care BC can also help connect us to gender-affirming services and community supports across BC.
Help4HepBC is a free phone line led by people who have or have had Hep C.