Do people still die of HIV or AIDS?


That’s a great question.

The answer is yes.

So while HIV is no longer a death sentence like in the early days of the pandemic, the reality is that not everyone is able to get into and stay in treatment. Left unchecked, HIV will still progress to stage 3, also known as AIDS.

What do we know about stage 3 HIV? (Source: CDC HIV Basics)

  • It’s the most severe stage of HIV
  • People with stage 3 HIV can have a high viral load and may easily transmit HIV to others
  • People with stage 3 HIV have badly damaged immune systems. They can get an increasing number of opportunistic infections or other serious illnesses
  • Left untreated, people with stage 3 HIV typically survive about three years.
102 deaths

Sharing this information about stage 3 HIV isn’t to portray people as somehow bad or negligent or something against which the general public needs to be protected. If anything, the system is failing them because medication isn’t getting to them. And until it does, individuals are more likely to die from stage 3 HIV and related complications. And that is angering because for once, we finally have the medicine to end the HIV epidemic.

In Marion County, Indiana alone, approximately 102 people have died where HIV is the primary cause of death since 2016. (In the same timeframe, a total of ~321 people who were living with HIV died, regardless of cause of death – but for this conversation, I believe that how they actually died matters.) I picked this timeframe because the concept of U=U was launched in 2016 given the amazing progress made in HIV treatments. Source: Marion County Public Health Department

In my mind, these 102 deaths were preventable. We have the science to not only prevent the spread of HIV, but the science to lower the levels in the body where HIV can’t be found. That’s called U=U, or undetectable is untransmittable. U=U helps the person with HIV to live a healthier life without damaging their immune system. The sooner someone gets into treatment, the better chance they have a minimizing long-term effects on their immune system.

U=U research also shows that a person follows their treatment and whose viral load is suppressed, or undetectable, can NOT transmit HIV sexually to other people. That’s HUGE. We can get back to having hot sex without the fear of giving HIV to someone else. Combined with PrEP, we literally have the science across the board to squash this bug.

Testing, prevention and treatment matter in this fight – but especially treatment. But shame, stigma, social determinants of health, lack of awareness and other factors keep people from getting treatment.

What’s gotten better?

Since 2016, the medications for prevention and treatment continue to get better with less side effects. Since 2021, an extended release monthly injectable option is available to people living with HIV. Also since 2021, injectable PrEP is available to prevent the transmission of HIV, and is given every two months to people not living with HIV. These options can be particularly helpful for people who find it difficult to take a pill every day. They are seen as key to ending the HIV epidemic.

With the Affordable Care Act in 2010, the fear of pre-existing conditions that could jeopardize one’s insurability are a thing of the past. That’s huge for people who get their health insurance from the marketplace or from their employer.

People may not realize there is government assistance for health insurance for people living with HIV. The Healthy Indiana Plan (HIP) is the name of the State of Indiana’s health insurance program. It is one of the Medicaid programs available to Indiana residents. It can assist people who make less than 300% of the federal poverty level.

There is also assistance for wraparound services through the Ryan White Federal HIV/AIDS Program. Check out the Indiana State Department of Health website for an Indiana HIV Care Site Directory.

In Marion county, we are a designated “hot spot” by the CDC. In 2019, we were one of the top cities & counties that contributed to half of the new HIV cases that year. Things have not been getting better – if anything, we get new cases at a higher rate than the national average. And, in general the trend has been upward (more new cases) since the county began reporting data in 2010. With this designation as a hot spot comes additional federal assistance for 10 years, leading up to 2030. This is called the Ending the HIV Epidemic program, which is managed by a steering committee and task force for Marion County.

HIV Care Coordination

For more information, contact your care coordinator. If you don’t know what that means, contact me and I’ll do my best to connect you with resources.

While all of this can be complicated, there is free assistance through care coordinators at AIDS Service Organizations (ASOs) or large healthcare systems like IU Health or Eskenazi Hospital.

For more information in Marion & surrounding counties go to the SIDE by SIDE website or social media. You can also check the Marion County Ryan White Services page for current providers in Marion & surrounding counties. For information statewide, check out the Indiana State Department of Health website for an Indiana HIV Care Site Directory.

HIV Peer Support

If you or someone you know is newly diagnosed with HIV, I invite you to join the Hoosier HIV+E Support Group. It’s peer led, so everyone in the room is living with HIV. We are not therapists or counselors, but we are people with lived experience. You don’t have to go through this alone.

The Hoosier HIV+E is also open to people who have been living with HIV a little while. Basically, it’s open to all Hoosiers living with HIV. All are welcome.

We meet on the 2nd and 4th Tuesday of the month via Zoom, from 6:30-7:30pm ET / 5:30-6:30pm ET. For more information on the Hoosier HIV+E, click here.

Many AIDS Service Organizations will also offer support groups. These are usually led by a staff person, who is often a therapist or counselor. But not always. Things will vary from organization to organization. Ask your care coordinator about options. Check out other organizations too. There’s nothing to keep you going to a support group at ASO #1, while getting your card coordination from ASO #2. Go where you find help & support.

Educate Yourself

When I was first diagnosed, my doctor recommended TheBody.com as reputable online resource. It’s a trusted resource, and easier to read than a lot of the official websites from the CDC or state and local health departments.

Thanks for listening.
Keep tellin’ the story

Professor Peacock

What questions do you have?

I’d love to hear from you. What did you learn from this post? What do you see differently? What could I have said in a different way that would have been more helpful? What information would you like to share from your experience?

102 deaths

Spirit Journey 2: HIV Crim Artivism at Spirit & Place


When I was approached to create art for a recent Spirit & Place event around HIV criminalization and stigma, I was scared to death. How could I convey something meaningful through photography? I literally thought – I’ll have nothing. I can’t do this. Why did I agree to this?

I struggled in fear for several weeks, which I’ve learned is part of my process. Sans the fear, it’s actually a great way to percolate ideas and let them grow. I’ve also learned the best way to dispel fear is to act. So one day, I sat down and started to create some prototypes in Photoshop. It worked! I suddenly had several ideas I loved that really spoke to how I was feeling.

I’ve used the term “artivist” in my signature line for awhile. I picked up this term working on CelebrateUU. Since the initial rush of creation in 2019/2020, I hadn’t really done much work on artivism apart from social media. So I dove head first into creating pieces that used photography & art to address the topic of HIV criminalization.

How does it make you feel?

“How does an image make you feel?” This is the question that is always in the back of my mind as I create digital art from photographs. This questioning is also a form of art therapy, helping me to reclaim the shame & stigma I experience in life through digital art.

There is so much fear living with HIV. It’s kind of on “slow repeat” in the background of my life.

Fear of disclosure.

Fear of sex.

Fear of not being loved.

These are by far the top 3.

From that, came my first piece. Fear of…

Fear Of
Fear of…

Looking for something positive

Pun aside, I wanted to show more than fear or shame based art. I wanted to use this experience to bring healing, reclaiming the shame and stigma I experience living with HIV.

It was easy to identify with the stigma and fear created by our HIV criminal laws. wanted to go beyond that to rescript the negative messaging around HIV criminalization. 

I reflected on “what will it feel like when these laws are modernized?” Immediately, I thought of joy. And when I feel joy – I love to dance. From there flowed my central piece of the exhibit, Happy Dance

Happy Dance
Happy Dance

Expand my skills, sharpen my tools

With artivism, words and graphic design are an important element of the creative process. I had seen a great example of images and text in a marketing banner for a local university. Students faces were used to mark out text in a cutout form. It was really cool. And I had almost no idea how to do it in Photoshop.

So this gave me an opportunity to sharpen my tools, and expand my skills in Photoshop. Most of the tutorials I found were for text cutouts based on a single image. I had multiple images, which needed to be moved around to align with the text. It was more complicated than the marketing banner. But each time I reworked it, I found a smarter way to do things. Would started out as a manual process, requiring lots of rework if I tweaked the design turned into a pretty slick smart object that allowed me to move the images around to show up best under the text.

I used this technique in the next two pieces – HINAC Warriors and 1 Every 14 Days.

HIV Is Not a Crime
HINAC Warriors

1 Every 14 Days

Every 14 days in Indiana, someone in Indiana has court contact under outdated laws that unfairly criminalize people living with HIV or viral hepatitis. Nobody  should ever be arrested because of a health condition. 

“There is a movement in the U.S. to modernize HIV-specific criminal laws to bring them in line with current medical sciences and best criminal justice practices. …Experts argue that law reform is needed to effectively end the HIV epidemic.” – HIV Criminalization in Indiana Law Enforcement Research; Authors: Foote, Cisneros & Sears; 2022. 

For more information on efforts to modernize Indiana’s outdated criminal and public health laws,go to hivmodernizationmovement.org.

1 Every 14 Days

Manifest destiny – intention in art

I have seen how setting any intention can bring about the very outcome we desire, even when things are outside of our control.

We’ve gotten a fair bit of decent news coverage this past year with HIV modernization in Indiana. I wanted to use these to tell part of the story. At one point, they were going to be part of Happy Dance, to somehow convey the moment when we were successful in changing that laws. In the end, I found they stood on their own – and were a way to set an intention for our work.

From there came the final piece around HIV Criminalization, November 2022 Future State: Will Life Imitate Art?

November 2022 Future State: Will Life Imitate Art?

#CelebrateUU

I wanted to bring in U=U to the conversation, because our HIV criminal laws are based on 30 year old science. Since 2016, we know that when modern treatments reduce HIV to undetectable levels, it can’t be sexually transmitted. That’s also known as U=U – undetectable equals untransmittable. That’s huge.

If I my viral load is undetectable – which it is – why should I even have to disclose, because there is no risk of transmission? 

CelebrateUU builds on the concept of Undetectable=Untransmittable (U=U), calling on individuals living with HIV to start recognizing and celebrating our anniversaries of having an undetectable viral load. With this movement, we are putting a face and story to HIV and educating people about the science behind U=U. This is one powerful way to help end the stigma associated with HIV/AIDS.

I started CelebrateUU with 3 other individuals in 2019 & 2020. I had shared their stories on my CelebrateUU page, but had never shown them in a gallery setting. I’ve learned that every art pieces changes me, and that becomes even more true when I print them out. There’s something tangible and real to the story.

I also reached out to two friends who work in the HIV modernization space here in Indiana to include them as two new stories. Their faces & voices were premiered at Spirit and Place.

HIV Modernization
Ending The Stigma of People Living with HIV
Part of the Spirit & Place Festival

About this event

Through an art exhibit and panel discussion, learn how people living with HIV and their allies are working to end HIV stigma by modernizing Indiana’s outdated HIV criminal laws.

People living with HIV often face stigma and discrimination related to Indiana laws that criminalize them due to their positive HIV status. This event features speakers living with HIV who are working to end HIV criminalization through legislative change, activism, art, and community support.

A visual art show featuring Indy-based artist Contonnia Turner, Jr. and photographer/digital artist Todd Fuqua will provide a backdrop for the discussion. Contonnia Turner, Jr. is a talented young Black Hoosier with multiple layers of intersecting identity who creates artwork that reflects who he is physically, mentally, and spiritually. Todd Fuqua is an Indianapolis-based artivist (activism through art) who started a social movement called CelebrateUU, building on the concept of HIV Undetectable=Untransmittable (U=U).

Top Tips for Dating When You’re a Person Living with HIV (revisited). When WebMD lets you down (surprise), take artistic license! I know that’s a long title. Sorry, not sorry.


Today, I came across TWO sponsored ads on Facebook my WebMD. The worst of the two was about dating for people living with HIV. It sucked.

Needless to say both ads by WebMD left me wanting better.

For my sanity, I needed to right this wrong. So I’m re-writing their article with my own voice.

I’m admittedly plagiarizing in a creative licensing approach to bring at least one additional voice of lived experience. I really don’t think anyone is going to sue me over this, but if so, this is my act of corporate and civil disobedience.

Disclaimer: I’m SURE WebMD reviewed this content with their internal panel of people living with HIV for stigmatizing language for things that didn’t quite land right. The people involved did the best they could and intended no harm. In fact, it may have been written by someone who is also living with HIV. We are all human (including me).

Nonetheless, they fall short (as I’m sure I will from my narrow, majority-except-for-the-gay-thing GWM perspective). But here I go because I can’t be silent.

WebMD – get into 2022 and rework your language! Make it person-centric and don’t put the burden of discussing sexual health primarily on the person living with HIV. Consensual sex between two or more adults mean all parties are responsible for their own health, for asking the right questions, and for sharing important health information. Be precise with your language – language matters. We need medically accurate information.

Someone probably got PAID to write the WebMD article. I’m not getting paid. So please receive these edits as a Letter to the Editor, bringing about change by taking control of my own narrative.

For everyone – I want to learn more complete, helpful and accurate ways of writing too – so your comments are welcome. Your trolling is not – so don’t make me close comments.

Top Tips for Dating When You’re a Person Living with HIV (revisited)

Finding a partner while living with HIV may feel scary. Here are some tips from others who understand what you’re going through, who are also living and even thriving with HIV.

I give credit to WebMD for most of this content – source article here. I have added or edited content where I thought the information was dated, inaccurate or poorly worded. I’ll underline text where I made edits

Living With HIV

Finding a partner when HIV is something you’re living with can feel scary, but you can have a fulfilling relationship. HIV is treatable, and with treatment, you can live a long and normal life. Your partners can also take steps to minimize their personal risk of getting HIV.

Be Informed

It’s sometimes hard to talk about HIV with new or potential partners. It’s normal to feel stressed or embarrassed, but learning more about your condition can help. Ask your doctor about how and when to disclose your status. Do your own research online or by talking to a care coordinator, case worker, self-advocate, peer support, mentor, or other trusted, knowledgeable people in your community. Find a support group, in person or online. More information and conversations about HIV will make it easier to talk about living with HIV.

Remember That Treatment Is Prevention and U=U

HIV medication lowers the amount of HIV in your blood until it’s undetectable. This helps your immune system repairs itself and stops you from getting other illnesses. If you’re taking medication as directed and are undetectable for at least six months, the virus is untransmittable – a nerdy way of saying you cannot sexually transmit HIV to your partner. That’s right. U=U. Undetectable=Untransmittable. Can’t find it, can’t share it. It’s that simple.

Decide when it’s best to disclose

There are many factors to consider when deciding whether or not to disclose to your partner. Your safety is just as important as the safety of your sexual partner. There may be laws in your state that require you to tell your partner that you are living with HIV before having sex or sharing needles.

It is everyone’s responsibility to get tested for HIV and other sexually transmitted infections (STIs). No one can force you to disclose, but in most cases it is recommended to avoid misunderstanding and to do no harm.

But the world is grey, so here are some factors to consider in deciding when it’s best to disclose:

  • Knowing when to disclose your HIV status during dating can be a big worry. If you aren’t having sex, you can decide when to tell a potential partner. Talk about it when you’re both sober, and you feel safe.
  • In a safe, consensual relationship between two or more adults, it’s helpful for all partners to take the initiative to know and share their HIV status, either HIV negative or positive. In this way, everyone is taking responsibility and making decisions for their own sexual health.
  • In other circumstances, it may be unsafe to disclose your status to your partner because of abuse, domestic violence or other real life situations. Consider reaching out to a local domestic violence advocate for help in getting out of an unsafe situation. In some states, there may be legal risks for not disclosing. This is where harm reduction comes into play. What poses the least risk of harm? Do that first. But get help. You do not have to do this alone.
  • Knowing that an undetectable viral load poses no risk of sexual transmission means you can make informed decisions about whether or not to disclose your status. This is all about risk management and making informed choices based on your circumstances and the best information possible.
  • In some states, laws may be written that make it “their word against yours” if you were to be charged with a crime for not disclosing your status to a partner. Consider following up any important conversations with a brief email or text message as written proof that you disclosed your status. It may sound awkward to do, but the law isn’t always fair. Alternatively, send that email or text to yourself or make a note to a written diary of the date, time and details of the conversation.
  • Knowing the legal realities in your state for people living with HIV can help reduce fear, shame, stigma or other barriers to disclosure. Most states have information on HIV criminalization, or contact these national organizations [SERO, Health Not Prisons Collective]

Practice Harm Reduction to minimize risk

There are many things you and your partner can do to minimize risk associated with HIV and other sexually transmitted infections. The relative risk of any behavior increases if you have multiple partners.

  • Knowing the relative risk of various sexual behaviors, you can decide when to tell a potential partner based on whether you are engaging in behaviors that have no or negligible risk of transmission. [POZ Magazine Article on HIV Transmission & Risks] Talk about it when you’re both sober, and you feel safe.
  • Consider using condoms, which prevent HIV transmission as well as other sexually transmitted infections.
  • Practice safe sex by engaging in activities that pose no risk of HIV transmission. Oral sex has no risk of transmission as long as there are no open sores or cuts in the mouth or on the genitals. Touching, use of toys, frottage and mutual masturbation are examples of other safe sexual activities. Toys should not be shared, or if they are, clean them in between use. [POZ Magazine Article on HIV Transmission & Risks]

Request Your Partners to Take PrEP

Encourage your partners who are not living with HIV to talk to their doctor about PrEP. PrEP stands for pre-exposure prophylaxis, which means they take it before sex or needle sharing to lower their risk of infection. It’s a highly effective medicine. PrEP for your partner would make most sense if you aren’t undetectable or have trouble staying undetectable or in situations where there may be multiple partners involved.

Practice Self-Care

Whether or not you are living with HIV, dating and finding the right person takes time. You might feel stressed about your love life and how HIV affects your relationships, but be kind to yourself. Take time to do what makes you feel good and helps you maintain your sense of self.  

Find Support

Living with HIV can be stressful and lead to a lot of emotional distress. You might find it helpful to talk to a counselor about ways to cope with your feelings and your condition. Finding other people who live with HIV can help you feel a sense of community. Plus, you can ask them for advice.

Be Yourself

If you feel embarrassed about living with HIV, you’re not alone. But remember, it’s not something to feel ashamed about. Look for a partner who appreciates you for who you are. Be yourself and ask for help if you’re struggling to feel confident.

I will improve this, but wanted to get SOMETHING out that spoke more to my truth, to my experience, to my learning. I could do better. There are some places to flesh out. But it’s a start.

Keep tellin’ the story.

Sawubona

Professor C Todd Peacock III
Community Artivist, Connector, Storyteller & Healer