The Cure Chronicles: HIV with Marnina Miller
Marnina is a Human Rights Activist, HIV advocate, Youth Ambassador for “Youth Across Borders'', and a recipient of the Violet Award which recognizes powerful voices in the LGBTQ+ community. As a 32-year-old Black woman who has been living with HIV for nine years, Marnina shares her story to help others by working with the Southern AIDS Coalition as an outreach coordinator. She also shares her experience on TikTok to build awareness about HIV and support people who are living with HIV. Marnina currently serves on the Board of Directors at the Positive Women’s Network-USA (PWN-USA).
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Jeff Galvin: Marnina, welcome to the show. Thank you for joining us.
Marnina Miller: Thank you so much for having me.
Jeff Galvin: Our pleasure. Of course. You've got a really interesting background and relationship to the AIDS community – or the HIV community, I should say.
So you do some stuff on TikTok. You are on the board of directors of the Positive Women's Network. You are working full-time in organizations that deal with this and LGBTQ community and so forth. So you know, clearly one of the things that inspired you to get into this would've been being diagnosed with HIV.
Can you tell us a little bit about how you originally came to realize that you had HIV and is that something you'd be willing to share with us? That experience of crossing the Rubicon, so to speak, going from a situation where maybe you didn't think about it at all to suddenly this is something, a factor in your life.
Marnina Miller: Definitely. So I'm definitely willing to share my story and I do so to increase advocacy and HIV awareness. And so my story began because I was a college student out partying, having fun. I was dating this guy that I fell madly in love with and I was a thousand miles away from home. I'm originally from Michigan, but I came to Texas to go to Texas Southern, which is an historically black college here in Houston.
And I really enjoyed myself. I was having a good time dating, and I got into a relationship with this guy and I said, you know what? After a couple of months of us dating, I said, we should go get tested cuz it was around the time in which I needed to go get my pap smear. You know how we do that every once a year.
And so I said, you should come with me and go get tested as well. And so when I went inside of the office, I got my results and they told me that I was a person living with HIV. I was devastated, I was shocked, I was hurt. And immediately I went to the desk to confront him to see was he outside of the waiting room?
Was he waiting outside in the car? He actually left. I think that he knew that he was living with HIV and he knew his test results and he knew that he made me contract HIV and he was possibly dealing with so much stigma that he didn't want to deal with his diagnosis himself. And so once I realized I was a person living with HIV and they gave me a huge pamphlet from the community – like the community organization that I was visiting at the time – I threw all the paperwork away. I did not want to be known as a person living with HIV. I didn't want this diagnosis. I didn't even know how HIV was transmitted because we often talk to children about STDs and STIs, but we really talk to girls about pregnancy.
That thing was drilled in my head since I was a little girl. Do not come home and be pregnant. So I've been on birth control since I was 16, so the last thing on my mind was HIV.
Jeff Galvin: Yeah. Wow. No, that's a shocking experience and it sounds like that was the end of your relationship with this person.
And it seems like almost overly understanding of you to say, maybe he was affected by the stigma, but I think that, it's critically important that people be responsible if they know their status to protect the people around them. So that I find to be. Very unfortunate. And really in the inexcusable category if in fact he did know that he had that.
You really flipped the script though, didn't you, from throwing away the pamphlet to getting out there and being an advocate and talking about this. And you said at the beginning of this last answer, that part of your goal was to reduce the stigma surrounding HIV. What do you see as being the factors, the forces of stigma and how they impact your life, other people's lives, and how they can understand that and be prepared and deal with it?
Marnina Miller: So for me, I really think that stigma really fuels the HIV epidemic. Stigma is so layered. You could deal with internal stigma. So I'm dealing with my own self, and then I'm dealing with external stigma, so what people may say about me at church or at school. And then on top of that, as a woman who identifies as queer, I'm also dealing with homophobia and my trans sisters may be dealing with transphobia.
So it's all of this layered stigma around HIV that keeps fueling this epidemic, especially among communities of color.
Jeff Galvin: Yeah. Interesting. So it's the people's fear and unwillingness to talk openly about these things and to actually deal with this stuff directly that can be perpetuating it or even increasing it within certain subcultures.
Your life up until when you were diagnosed sounds so normal to me. That's exactly what you're supposed to do. You go to college and you have fun. You start dating, you get that level of freedom and independence and it's a big part of growing up. And, of course I think all parents and certainly all kids hope that they won't carry anything away from that will be a burden in their life.
Like you said, everybody told me not to get pregnant, and you were being really careful about that. Okay. But sometimes it doesn't work out that way. Yeah. But, I guess I'm drifting a little bit away from the question. So my question was really, within the queer or lesbian or just LGBTQ community, in the black community, is that more of an issue than the white community?
Do you know? Do you have people within your organizations that give you perspective on how, you know their families are dealing with it and their friends and their communities are dealing with it? What are those special considerations for you?
Marnina Miller: So personally, I could possibly only talk about being a black woman that's queer living with HIV, but I do look at my white brothers and sisters, and I am noticing that, what really impacts stigma is not only someone's identity, but it's also someone's health efficacy. The fact that black folks are less likely to have healthcare and health insurance and have health equity and know about all of the ways to prevent HIV.
Typically, when you look at HIV prevention campaigns, they don't feature women, cisgender women who are like me, that are black, that are, going to college.
They typically don't feature folks that look like me. And so those are some of the things that impact stigma as well, even structural stigma. So if my doctor is not culturally competent, they may further stigmatize me and I may not go back to my physician. So previously when I got my diagnosis, the lady was extremely disingenuous.
She was rude, she was careless. She just handed me the piece of paper and just said, oh, look on there, call the physician and you'll be fine. There was no care. There was no concern. She didn't think about the fact that this is a life-changing diagnosis. And so that goes back to structural stigma. So whereas black and brown communities may have more of a stigma around homophobia and transphobia, I think a lot of times white communities may have structural stigma that's in place that may impact someone's diagnosis in a different way.
Jeff Galvin: So you're you, it sounds like you don't know specifically what the differences are, but you imagine that there are some differences and that there are certainly a lot of forces of stigma within your own experience. This is a great, story that you're telling, or an important aspect of it that at the point of diagnosis, some empathy, some, some genuine e exhibit of caring, some the empathy really needs to be for the shock value, like the, to throw a pamphlet at you and say, call the doctor, you'll be fine.
As opposed to recognizing, what a shock it must be.
Marnina Miller: So you do have organizations that now have peer advocates. They didn't really have peer advocates back in 2012-2013 when I got diagnosed.
But there are peer advocates now that when you are diagnosed with HIV, they will hold your hand and go to the doctor with you. And there are people living with HIV that are these advocates and they are in these organizations that are paid members of staff that are living with HIV, that know what that diagnosis means. And so I think had I had that person, my diagnosis probably would've been totally different.
Jeff Galvin: So now you've flipped the script and you're out there and so you are one of these advocates. You're helping people to come forward and deal with their diagnosis, and I think in some cases, be open about it.
Join advocacy groups. Be a support system for people that are newly diagnosed and for each other too, right, because it's nice to have people around you that understand what you're dealing with every once in a while when you know people look at you crosswise for one reason or another.
It's great to have a community, right?
Where are you having the most impact? Is it TikTok? Is it being part of the Positive Women's Network? What, tell us about all the different things that you're working on and how that's changing the picture.
Marnina Miller: That is a huge question, Jeff.
I think that there are multiple ways in which I, myself, have been able to really hone in on HIV activism. I think the most creative and fun way to me is my use of TikTok, and I have named myself Marnina the Queen, and folks really love Marnina the Queen. I have made kinda like infotainment, entertaining and also informational.
And so what I do on TikTok is I talk about ways in which HIV is transmitted. And if you look at the trends of the folks that are on TikTok, it's mostly younger folks because TikTok is a very quick video app where people are thumbing through videos. And so to get and disseminate information to younger people between the ages of 18 to 29, it is really easy for them to see me dance into a hip hop beat while also talking about the ways in which HIV is or is not transmitted.
Then I also talk about the ways in which I'm talking about my own sex positivity and how HIV is not transmitted as long as I am undetectable and I could still have a healthy and sex sexual sex life. And how sex doesn't stop just because of your diagnosis. Also with Positive Women's Network, it's an organization that's near and dear to my heart.
PWN is a national organization that really hones in and puts a gender lens on the HIV epidemic. A lot of times women are left out of the conversation around HIV because the epidemic originally started around as, white gay men. And so a lot of the epidemic really left our voices out.
So Positive Women’s Network really inspires and mobilizes women living with HIV to advocate for changes to our lives and to really uphold our rights. So we not only do federal policy work, but we talk about leadership and how to do that at the local and state level. So we're talking about ending criminalization, universal healthcare, and talking about ending the violence against women living with HIV.
Jeff Galvin: That's a lot to take on. I think you made another really big point there is that there is, part of the stigma out there is that only gay men get this disease. And that certainly leaves a lot of women unprepared to understand that taking precautions even would be important, right? And straight men are gonna do the same thing. And then, to think that there's this whole concept of criminalization that I, that I just don't get – again, coming from my background.
So how are people facing this concept, or this attempt to criminalize their status? We don't criminalize people with diabetes, or cancer even. Or even, it's known that there are lots of viruses out there that travel between all of us and that spread around freely that can lead to cancer. We're not criminalizing any of that stuff. But you're saying that HIV somehow is getting some special spotlight showing on it. Tell me a little bit about that.
Marnina Miller: So I'll say that the government's failure to address pandemics and epidemics have always led to criminalization. As we've seen previously with Covid.
Covid was trying, folks were trying to criminalize people with Covid because the government's failure, once again, was not allowing people to have access to life-saving measures. We saw how rich folks were getting the vaccine first. We saw how the most marginalized folks were dying at rampant rates.
Black and brown communities were so impacted by Covid and the death rates of Covid. And so it's the same thing with HIV and the 1990s. The government saw that folks were willing to add criminalization laws to their specific states just to receive life-changing measures of HIV care and treatment.
And so what happened is in the nineties, you have all of these HIV criminalization laws that are now saying that, hey, once you know your status, you're now responsible for yourself. And so now you have created what I like to call a patient to prison pipeline. So now that I know about my status, I'm automatically more likely to be criminalized for it.
A lot of states are now looking at the HIV criminalization laws and are trying to modernize it. One that I really love is in Cal. Currently, California has no HIV criminalization laws, and if it does in certain cities, it's only a misdemeanor. And on top of that, as long as you are undetectable, you do not have to talk to your partner about your status as long as you remain undetectable.
But in Texas, currently, my body is considered a deadly weapon. Even though we don't have any HIV criminalization laws, we do have what we call sentencing enhancement. And so a district attorney could look at a case, let's just say, I get into an altercation with someone. I can get charged with assault with a deadly weapon because in Texas, my body is now considered a deadly weapon.
And so we also know that mass incarceration also impacts the epidemic because there are more Black and brown bodies that are impacted by these HIV criminalization cases. Currently in Texas, there's a woman that's doing 20 years in prison for spitting on a police officer because she was living with HIV at the time of her arrest.
And so HIV criminalization laws are really impacting the way in which we service communities and the way in which people know about their status.
Jeff Galvin: Mind blowing. That was a very succinct but informative overview of the kind of things that you're talking about. Like you could understand the idea, and I suppose this would be true no matter how somebody did this, but if they knew they had HIV and they intentionally gave it to somebody else, that would fall into existing laws, right?
It wouldn't be about HIV, it would be about them actually leveraging something that they knew would cause harm to the other person. And you don't need any new laws for that. But the idea that somebody who spit on a police officer, so you have a hundred people spit on a police officer, that probably happens every day in America – somebody gets into a situation with a police officer and they react in a negative way. And that may be something that happens, right? And they get arrested or whatever, but spit is not dangerous because it came from an HIV infected individual, especially if they're well controlled.
There's zero chance of getting an infection from that. It wasn't like they took out a knife and stabbed themselves and then stabbed a police officer and rubbed it together. We know how these things transmit. So that's nothing. And somebody's serving 20 years for that.
Marnina Miller: Yeah, because our HIV criminalization laws are not modernized. Science has not caught up with a lot of criminalization, even with other ways in which folks are criminalizing. So this idea of mass incarceration has now impacted the HIV epidemic.
Jeff Galvin: Yeah, that's interesting because all these viruses move from a phase of misunderstanding to eventually understanding, so all the reactions that happened in the early stage where it's just, it's characterized by fear and uncertainty, right?
And then, as certainty starts to come and we know exactly how to avoid problems. Covid, we have a vaccine now, we even have some treatments that can minimize it. We know how to avoid it with masks and stuff like that. The laws don't catch up right. Or they take a long time to catch up.
And that's amazing that something that's been around for 40 years. And when you look at the amount of research that's been done in HIV and how much scientists know about it. Our whole HIV Cure program is based on what has been learned over 40 years about HIV.
And it is amazing to me how much we know about it. You could clearly update everybody's understanding of this and it would make a better world. I just did not realize that one of the places that we need to dig down into is, these leftover statutes on the books that are unfairly punishing people or limiting people or characterizing people based on something that really has no really no impact.
Marnina Miller: They’re still based in the southern states, so they are in the states that have the least access to care. No Medicaid expansion. Places where people are the poorest in these states is where the HIV criminalization law still exists, unfortunately.
Jeff Galvin: What do you think is holding them back – like in New York, I interviewed somebody from New York, and when he moved up there, the first thing that they did was, attach him to a doctor, and give him a bus pass and a place to live.
To make sure that he wouldn't be homeless and miss his appointments, and that he had appointments. He wouldn't spread it, right? That's the whole point is that, this sounds like expensive stuff, but it actually saves money. It saves lives, right? It's efficient to give people care. It's efficient to make it easy for them to get that care.
Marnina Miller: So, as you know homophobia and transphobia really run really deep in Bible belt spaces.
So currently in Texas we have over a hundred anti-trans laws. So we have laws that are directly impacting trans communities. We have laws that are impacting people who are undocumented. So if I'm undocumented or I'm a trans woman, how am I, why would I go seek treatment and care if I could be essentially locked up or jailed or, not being able to afford medication due to the lack of economic opportunities in the South.
And you also have legislators who are making it extremely difficult for folks to even live freely. And so it is all these compounded structural stigma layers that are directly impacting the HIV epidemic.
Jeff Galvin: And it's so much deeper than just misunderstanding, right? Now you've codified a lot of this old misunderstanding and also a lot of just conflicting feelings and fears again, in the system.
And it occurred to me when you were talking about the risk of getting arrested for just being who you are, even though you're no danger to anybody else. And that would prevent you from dealing with your diagnosis and dealing with your treatment and they're creating people that are like your old boyfriend.
Marnina Miller: And also, if you look at the rate at which black trans women are dying here in the south, the average lifespan of a black trans woman in the southern states is only 35 years old. And we know that the lifespan of a cisgender black woman is 75. That in itself shows you the violence that's perpetuated against my sisters of trans experience. And so it is all of these layers of social injustice that directly impacts this epidemic.
Jeff Galvin: So how can people that are listening to this contribute positively – that is, what are the sort of things that we should be looking for or, being sensitive to supporting, and so forth.
It sounds like you do a lot of that work in Texas, people from all over the world are on the internet listening to your TikTok and hopefully listening to this too. What can we personally do to help to mitigate some of this stigmatization and all these antiquated legal situations.
Marnina Miller: I would say educate and inform yourself. Positive Women's Network does an amazing job by having this thing called Speak Up. And if you go onto their website, PositiveWomensNetwork.org, you'll be able to add yourself to their listserv. And they have so many different opportunities in which you're able to talk directly to your legislator and people in your community about the impacts of stigma or HIV criminalization in your particular state.
I will also say provide tangible and accessible information to counter misinformation. So if you're seeing someone who's using inappropriate language to talk about the epidemic directly, tell them about that. We no longer say I'm HIV infected. I say I'm a woman living with HIV. Because we use people-first language to talk about the epidemic and also building trust with healthcare providers and patients.
So if you're a healthcare provider, make sure you're culturally competent. If you're a patient, make sure that you're going to your care provider with a list of questions. And if you don't feel comfortable, take someone with you . Comfort folks and make sure that you're combating the fear that you may have with real honest conversations and facts.
So if you're having issues around, wanting to talk to a woman of trans experience, there are so many different organizations that have advocates that are there to talk to you. I would also say at the Southern AIDS Coalition, I work alongside people living with HIV to really help with the HIV epidemic in the South.
We have grant opportunities for 501C3 organizations. If you have a nonprofit you can apply for grant funding, so that you can start doing some of these conversations in the south or in any southern states where you could talk about HIV criminalization or you could have honest conversations about stigma.
Jeff Galvin: Great overview. And, so hopeful in a way, right? In other words, yes, if you hear about all these problems even educating yourself and being careful with your language can help to reduce stigma. But then there's so much more that you can do, and I assume that you can apply for grants at the Southern AIDS Coalition, or you could donate money there too, that could be granted out.
So that's something that I would encourage everybody to think about to help organizations like this, to build better infrastructure in places that may be more neglected in the United States or around the world that can give support to folks that are living with HIV and can help to minimize the stigma.
Not just on those people, but on the people around them. We don't want to force people into hiding and/or unwillingness to find out their status or deal with their status. And I think you provide an amazing example of kind of empowerment in a way. Like I just love the way you talk about this, you sound informed and confident about it.
And I that's one of the takeaways that I'm feeling from our interview. I hope other people saw that as well. Where can we get in touch with you? People want to see those TikTok videos. People want to see more of the queen. Tell 'em where they can.
Marnina Miller: You can find me on any social media site, Facebook, Instagram, and TikTok. Marnina the Queen, so M A R N I N A, the Queen and also at SouthernAIDSCoalition.org. We do a lot of work around the South, so if you're in the southern states, make sure you're looking at our Instagram because we are currently traveling to a lot of different states to do a lot of work around empowerment.
And I would say thank you so much, Jeff, for your kind words. I'm definitely a reflection of my community and those that have really taken intentional time to pour into me. So thank you for that.
Jeff Galvin: Thank you for sharing your time to educate me and hopefully some of the people that are watching this are also getting a similar benefit from listening to your experience and your wisdom on this topic, and your passion and energy for it as well.
Thank you so much for being on The Cure Chronicles today.
Marnina Miller: Thank you so much for having me.