What Do Young Women with HIV Need?

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

April 10, 2015 – This National Youth HIV/AIDS Awareness Day (NYHAAD), Positive Women’s Network – USA honors young trans and non-trans women living with HIV – long-term survivors as well as more recently diagnosed individuals – and affirms the unique needs of young people with HIV.

In conversations and advocacy around issues facing young people living with HIV, “youth” is often considered synonymous with young gay and bisexual men; and this focus is certainly warranted, given the rates of HIV incidence in this group. However, all young people living with HIV have distinct needs and challenges, and require culturally relevant, coordinated, expert care and support to thrive. It’s not clear that there has been adequate attention to the particular issues that may face young women with HIV, including transgender women.

gaps_nyhaadIn the US, more than half of women and girls diagnosed with HIV in 2010 were between the ages of 13 and 34. Young women of color, and particularly young Black women, bear the heaviest burden of HIV in this group. HIV diagnoses continue to increase among young people, and CDC’s latest surveillance report shows that rates of death for young adults with AIDS diagnoses who acquired HIV perinatally are increasing.

This points to a need for more programs of the kind provided under Part D of the Ryan White Program – including comprehensive services that help young people with HIV transition to adult care – not fewer. And while more information about transgender women in general is sorely needed, the data that do exist show that young transgender women are profoundly impacted not only by HIV and its stigma, but also by transphobia, discrimination, and lack of family support.

tranisha_PWN quote picture
Tranisha Arzah.

“As a young women living with HIV, I want to see an integration of HIV and sexual and reproductive health services in place,” says Tranisha Arzah, a 24-year-old peer advocate in Seattle, Washington, who was diagnosed with HIV in 1990. “We need to face these gaps as intersectional barriers to change.”

Grissel Granados, who has been living with HIV all her life, echoed the call for holistic sexual health care for young women with HIV, and adds a call for more spaces for women living with HIV to connect with peers. “It is not acceptable to have absolutely zero resources for young women when it comes to social-emotional support,” she says. Granados is a social worker by training, works at Children’s Hospital Los Angeles, and serves on the Presidential Advisory Council on HIV/AIDS. “Young women living with HIV feel stigma as it is; we can’t isolate them further by not providing spaces that are supportive of their unique needs and experiences.” Read more of Granados’ perspectives on the needs of young women with HIV

whatplwhneedThis dire need for increased emotional, psychosocial, and mental health support for young people living with HIV hit close to the hearts of many in the HIV community at the beginning of this year, with the passing of Chakena “CC” Conway / David Isaiah Joseph. CC was an artist, and advocate, and the youngest founding member of PWN-USA, only 21 years old at the convening of 28 diverse women living with HIV that gave birth to the network in 2008.

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CC Conway / David Isaiah Joseph.

Born with HIV, CC (who identified for several years as David, a transgender man, but was, according to friends, going by “CC” at the end of their life) had loving friends and mentors, and benefited from advances in medication. However, in facing a lifetime of challenges – including lack of family support – “We get tired,” says Quintara Lane, a longtime friend of CC’s and an advocate who has also lived with HIV since early childhood. “Even adults need motivation to push [toward being healthier and taking meds] – that hand-holding situation. CC was tired of taking meds. Now CC knows a life without HIV.” Read what fellow advocates and loved ones had to say about CC

What did CC need in order to know a life of well-being and dignity, with HIV? Did providers ever ask them, and tailor programs accordingly?

To commemorate NYHAAD, and in memory of CC / David, PWN-USA invites young women with HIV to tell us what they need – to share opinions, thoughts, experiences, and demands in response to the question:

What do you think are the greatest needs of young women living with HIV today?

We strongly encourage young women living with HIV to respond to the survey below (also linked above); and PWN-USA looks forward to advocating more effectively for the needs of young women with HIV.

 

NYHAAD Blog Entries

Mina Meet Mina, a Teen Living with HIV

Resources and Reproductive Justice for Young Women Living with HIV

Resources and Reproductive Justice for Young Women Living with HIV

By Grissel Granados

In my opinion, the greatest needs of young women living with HIV include, but are not limited to, adequate medical services that are responsive to our sexual and reproductive health needs.

As a young woman living with HIV, I had a terrible experience related to my sexual and reproductive health. Once, I was denied a birth control refill and was told that I would be okay without it since I should be using condoms with my partner anyway. I stormed out of that clinic and was out of care and medications for several months because I refused to go back to that place that insulted me.

grissel granados
Grissel Granados.

Young women must be able to access HIV care with providers that are able to treat women holistically, instead of just looking at viral loads and CD4 counts. The full sexual lives of young women must be acknowledge by providers. Doctors need to ask about young women’s sexual practices without making assumptions. Case managers and therapists must support young women in being able to explore their sexuality in a healthy way, since many young women live in fear of their own sexual selves. I have met young women born with HIV who have grown up in such fear of themselves as sexual beings that they cannot even fathom dating, much less having healthy children someday.

The other big need for young women is to have space. Granted, the numbers of young women living with HIV are small; however, space must still be created to build relationships with other young women living with HIV. It is not acceptable to have absolutely zero resources for young women when it comes to social-emotional support. Young women feel stigma as it is already by living with HIV; it is not OK to isolate them further by not providing spaces that are supportive of their unique needs and experiences.

Grissel Granados is the coordinator of the Los Angeles Integrated Center for Care and Supportive Services at Children’s Hospital Los Angeles. She has spoken, presented, and advised on youth and the HIV response, as well as sexuality and sex positivity in youth work, locally and internationally. Granados was recently appointed to the Presidential Advisory Council on HIV/AIDS. She was born with HIV in Mexico City.

Meet Mina, a Teen Living with HIV

By Mina

Hi! I’m Mina. I’m a teenager and I’m in middle school. I’m adopted and I have a big family. I’m HIV positive. I’m the only one of my family members that has HIV. My brothers and sister didn’t get it when they were born because only some babies born to a mom with HIV actually get HIV. I am one of the ones that did.  I’m just like any other middle schooler that you could ever think of except I just have one difference – HIV. Nobody can see it; it doesn’t show. I have to tell them.

I’m a very goofy and silly girl. I love to have fun with my friends and enjoy myself. I want to be a psychologist when I grow up. For some reason I get really good grades in English class even though it’s not my first language and sometimes I still say stuff wrong! I am good in science too. I like math a lot, but I totally suck at math. It’s so hard!

My hobbies are dancing and Kpop (Korean pop). I love watching people dance and copying their movements, especially hip hop dancing. And I like to choreograph – make up – my own dances for my friends and I to do for fun. But I like listening to Kpop music and watching Kdramas (Korean dramas) even better than dancing.

youngwomen_nyhaadSince I’m a kid, I thought it was a good idea for me to write something for National Youth HIV/AIDS Awareness Day. It’s a day when people think about HIV and issues that are important to kids and teenagers. We are different from adults and have our own problems and our own things going on. But there are some things that are a problem for kids and for adults too, no matter your age. Like getting treated badly, or being hurt by the things people do to us or say to us.

 

Words that Hurt

I did not like it at ALL when I found out that people with HIV and AIDS were being called “HIV infected.” I DO have an infection, but I don’t like to be called that. And if they think about it, no one who is HIV positive would want to be compared to an infection. No one period would want to be called that. It’s just not a very nice thing. It’s almost like calling someone the “R” word instead of saying they have intellectual disability. Something that is called “infected” sounds really disgusting, and gross. I have HIV, and I know for sure that I am NOT disgusting or gross.

It hurts my feelings a lot to be called “HIV infected.” A LOT. I would rather be called an HIV positive person, or a person with HIV. Not an “HIV infected person” or a “person infected with HIV.” If you have HIV you already know you got it through an infection, so isn’t it kind of like overkill to say “HIV infected” anyway? I mean, there’s no other way to get HIV. You can’t buy it from the store or order it online. So by saying “infected” next to HIV you’re saying something extra you don’t need. We don’t say “mammal dogs” when we talk about dogs because we already know they are mammals.

I want to change this. I don’t want any other kids or adults with HIV to have to feel the way I feel. To be hurt and feel like something is wrong with you when you hear or read how you are “infected.” I want kids with HIV to be proud of themselves. So a few months ago I talked to my mom about how I was feeling and I decided to start “Mina’s Law” and to let the whole world know that I am #NotYourInfection. I’m a girl, not an infection.

 

“Mina’s Law:” The #NotYourInfection Campaign

NotYourInfectionThe reason why I started the Mina’s Law thing is because I read in school about “Rosa’s Law” and I thought it was really cool. I don’t know if you ever heard of “Rosa’s Law” before. Rosa is a girl who is a little younger than me. She has intellectual disability just like my brother does. People kept calling Rosa the “R” word and since that was the actual name back then, it was hard to get people to stop using that word. But when people realized that that word was being used to bully people, they found something better to call it. They did this even though the “R” word was the real name and was very common, because people are more important than words. They changed all these laws and got rid of every place where they said the “R” word. So now Rosa and lots of other people don’t have to worry about being called words that hurt them.

I hope that I can change things for people who have HIV like me, just like Rosa did for people like her and my brother. I can’t make people stop calling us “infected” but the governors and the President and all those people in charge of laws can. I want “Mina’s Law” to be passed. I want all the laws to be changed so that they say “HIV positive” instead of “HIV infected.” I know that HIV IS an infection, but it’s also just a disease. And unless I’m hearing other diseases like measles and the flu that you also get through an infection being talked the same way, using “infected” all the time, I don’t want HIV getting treated that way. Actually, I don’t want any disease or sickness to be called that, even if it would be more fair. I’d rather it happen to none of us. It frustrates me to think about all these laws and all these different places where “HIV infected” is written. It doesn’t sound right and it doesn’t make sense to me. Am I supposed to feel okay when I get older reading that stuff about people like me? I’m young now, but I will get older. It doesn’t sound very pleasing to me, and I don’t think using “infected” helps other people accept us.

People are already scared of HIV and words that remind them that people have “HIV infection” just make them more scared so that they will keep thinking bad things about HIV and people with it.  Some people might not think being called “HIV infected” is a big deal. I think it is. It hurts and it makes me feel like I am dirty and unworthy and like I’m not a real person but just someone who can “infect” people. The word HIV doesn’t make me feel that way. Only the “infected” part does. To the people who don’t think it’s a big deal, I want to know how many of you actually have HIV? Maybe it’s not a big deal to you because nobody is ever going to call you that. You don’t live with HIV like I do, so maybe it doesn’t seem important. But has anybody ever called you a name? Didn’t that hurt?

My parents told me a long time ago before I was born they used to call black or African American people “Negroes” and they used to call Asian people “Orientals.” Nobody gets called those things anymore because it hurts people. Even if I AM a “Negro” I don’t want to be called that. I think that the people should get to pick what we want people to call us. Even if doctors and everybody else doesn’t see what’s wrong with saying “HIV infected,” they should care that it is hurting our feelings. I have HIV and I hate being called infected. And I bet if they take some time to think about it, other people with HIV don’t like it either.

A lot of people panic over HIV, but it’s not the worst thing in the whole entire world. I’ve been taking my meds since I was young and I feel healthy.  I feel like any regular teen; I just take meds. By looking at me, nobody would ever guess that I have HIV because you can’t tell by looking at people. We don’t look sick and we don’t look “infected” the way a cut or something that gets infected looks all nasty with pus and stuff. People are trying to stop a lot of the bad ideas and wrong stuff that is out there about HIV so that we can be treated like everyone else. But how is that going to ever happen if we use these kinds of words? If I tell somebody, “I’m Mina and I’m HIV infected,” or “I’m Mina and I’m infected with HIV,” it’s like I’m saying it’s okay to describe myself the same way you describe something that is disgusting. And nobody thinks infections are good things and I think the only reason people don’t seem bothered about it like I am is because they are used to it being called that or calling other people that. They don’t think it’s bad because that’s what people have always said. But just because something has always been that way doesn’t mean it’s right. I’m a regular kid LIVING with HIV and I don’t want to be called “infected with HIV.” Call me HIV positive, or call me Mina. Don’t call me infected. I’m #NotYourInfection.

 

Life with HIV

If you’re wondering if it’s troublesome for me to have HIV, it’s not. Listen, please: other people who have HIV – especially someone who just got it, because they might be panicking. Listen, young people, older people, teenagers, kids, whoever. It’s going to be okay. If you take your meds properly – even if you have to take it every single day of your life – at least it’s keeping you healthy. At least you can keep living your life and doing stuff like every other person, just with meds.  Just imagine it. I understand that some people might get annoyed by taking meds every single day, but try not to stress about it. If you have a migraine you take meds and if the first dose doesn’t work when it’s time you take another one. If you have a cold you take meds and you keep taking them every day until it is gone because you know by taking them you’re going to get better. Our HIV meds help us get better. If you decide not to take them, you might be okay for a while, but eventually you will probably get sicker and sicker and then when you go back on meds you have to take even more meds than you had in the first place. So what’s the point?

Me having HIV – it’s not a big deal. When I heard the news about me being HIV positive when I was young at first I didn’t really understand it because I didn’t know much about health stuff, plus I didn’t really know English. But when I got little bit older, I started to tell my friends and stuff.  I told my teachers and people at my church too. Everybody I know doesn’t know I’m HIV positive, but a lot of people do know. When I first told them, some of my friends got paranoid, but most got over it. And some of them didn’t have a problem with it at all in the first place. All of these people who know are still my friends today.

I know it’s different too because I’m young. Lots of HIV positive people who are older are going through a whole lot of bigger troubles and they have a lot of things going on in their lives. They might be worried about telling friends, telling their boss, telling the people who you date, stuff like that. Everybody is different, but I believe that I’d rather just tell them. When you’re ready. You might need some time to get ready. Get to know the people to make sure they’re someone you even want to have in your life. You might need weeks. You might even need a whole year! But you need to know that some people DO have a bad reaction. I’ve had that problem. Even though it’s not as easy to get HIV as everyone thinks, some people still freak out about it. You might have to lose some people if they can’t deal with it. But there may be some people who don’t react well but when they take some time to think about it then later they’re okay. They might need to search up some stuff about HIV and then they’ll realize that it’s not terrible.  People need to realize that people like me aren’t like some vampires or werewolves out to get people. We just have a disability – HIV.

I’m glad I got a chance to write this because I am too shy to talk on stage in front of big groups but I am fine writing down how I feel. Since I am a teenager I have changed from when I was little. I used to tell almost everybody I had HIV. Now I think it over first and take some time to get to know people. It’s NOT a secret, but it is private. Just because you might not tell the whole world doesn’t mean that you think it’s a bad thing that you have to hide. It’s like if you have a crush on a guy. That is SO not a bad thing. You might think it’s the best thing ever. But I would totally keep that private because it’s so important and you have to be careful who you tell to make sure you can trust them with something like that. HIV is like that kind of.  It’s only one thing about you. It’s not the only thing or the most important thing, but it is still important.

Please help me to get the world not to be so scared of HIV and people with it. Mina’s Law can help. I hope you will sign my petition to get Mina’s Law passed. There’s hardly any signatures right now and we need a whole lot more. And please tell other people. You can also do some #NotYourInfection selfies holding a sign with the hashtag on it. I have a selfie stick and I’m going to do one for #NYHAAD. Will you join me?

 

NotYourInfection

Related Stories:

Words Matter: Sharing as Much as I’m Comfortable to Stand Up to HIV Stigma