Tag: AIDS

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

How does it make you feel? Art, Artivism & Art Therapy


This has become a bit of an inside joke with my therapists over the years.

“Yes, Todd. But how does it make you feel?” usually comes after I describe an event or situation with clarity & objectivity from my analytical left brain. It is harder for me to connect with the emotions and feelings that come up.

This question has also started to permeate my creative work. I’m a queer artivist – I bring my activism into my art. It’s also a form of art therapy, helping me to reclaim the shame & stigma I experience in life through digital creations. Music and art have the power to heal. 

I will also tell you that I struggle at times to identify the emotions in a photograph – or the emotions I want a given image to convey to the viewer.

When I was encouraged to create a piece for the HIV Is Not A Crime art contest, I was initially frozen in my tracks. How could I best convey how I feel when I think about HIV criminalization? What does stigma feel like? Where do these feelings come from?

Working in this space can be traumatizing for many different reasons. Thinking about HIV criminalization and the effects it has on my mental health can be heavy at times, bringing up sadness, shame, guilt and other difficult emotions. 

With this project, I wanted to rescript the negative messaging around HIV criminalization. I wanted this to be a positive message. It is easy to identify the negative effects of criminalization – much harder to find and hold onto hope. Hope for change. Hope for a cure. Hope for a world free of stigma and discrimination. 

That first required me to search my soul and imagine – what would it feel like for our laws to finally be repealed and modernized? 

Two words came to mind – joy and dance.

I could literally picture myself dancing, which is my happy place. 

From that inspiration came this piece which I call “Happy Dance”

I will be exhibiting Happy Dance along with several other original art pieces at the Phoenix Theatre Nov 3-13, 2022 as part of the Spirit and Place Festival. This year’s theme is Identify. My pieces will be part reflection, part therapy, part celebration! Join us on November 9th for the main event, which includes the visual art show along with a panel discussion.

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).

Explore the exhibit and interact informally with artists beginning at 5:30. The Talk will begin at 6:15 moderated by Terrell Parker and will include HIV Modernization Movement Chair Dr. Carrie Foote, and Co-Chair Mark Anthony Hughes. The Phoenix bar will be open, and snacks will be provided.

A partnership between Phoenix Theatre Cultural Center and HIV Modernization Movement Indiana.

Contact the event organizers at 317-635-7529 or cmacy@phoenixtheatre.org.

Walk-ins welcome, but registration is strongly encouraged by Nov. 9.

ABOUT SPIRIT & PLACE. The Spirit & Place Festival (Nov. 3-13) celebrates the powerful role the arts, humanities, and religion play in community life and is housed in the IU School of Liberal Arts at IUPUI. Learn more at spiritandplace.org

Register here

Remembering friends…telling their story


In the last couple days two very dear friends have been on my mind and help me with some things I’ve been facing. As such I wanted to take time to honor them and remember them because telling their stories keeps their memories alive in our hearts.

First was Phil. Phil was a very dear friend of mine in the early 90s – A mentor of sorts as I came out of the closet for the second time. (That’s another story for another day…) Phil taught me about living with dignity, enjoying the passion of music, and the value of investing time and energy with young adults. Phil was the first choral director for the Northernaires at North Central high school – a gospel choir at a public high school. He was also a man and lived with HIV. This was at a time when the world was very different. Our understanding and acceptance of the disease was far from what it is today. Phil took a calculated risk to share his same-sex partnership and his health situation (carefully and appropriately nonetheless…) with many of the students in his choir, particularly towards the end of his life in the mid 90s, as he died of complications related to AIDS. By doing so, Phil educated those kids, at a very critical time in their life, about HIV/AIDS…surely helping to reduce the stigma and misunderstanding among those teenagers, which played forward across relationships in future years & generations. He also showed them how to live with dignity…and ultimately how to die with dignity.

I was away on an international business trip when he passed. And fortunately my boss was very understanding and allowed me to fly home early in order to attend his memorial. The gospel choir performed at his memorial for a packed church (I believe at Trinity Episcopal in downtown Indy). And I will never forget seeing the one girl in the front row start to cry…and from there there was not a dry eye in the house. Those kids learned how to get through grief and loss at a very young age because let me tell you… They loved and respected their choral director. You could see it in their faces at the rehearsals and at their concerts.

I’ll never forget how Phil would remind them to tighten up their muscles and project… You should be able to hold up a quarter in the grip of your butt cheeks. And all it took on the night of the concert was still taking out a quarter and holding it up to the kids to remind them of proper posture and projection and muscle control. They knew the secret sign…and the audience had no idea what was being “passed” from director to singers in that moment…

Of course Phil was also the famous one who, at a house party at my place on Central, called out across the living room “hey everyone, let’s all chip in and buy Todd a butt.” Yes I have a flat ass thank you very much Phil for pointing it out. I love you dearly.

The second man that came to mind this week was Scott. Scott was our lay leader at Broadway. During my unemployment in 2010, he left his full-time career as a HR executive to follow his dream of helping people in the community through his gift as a life coach. My pastor recommended that I perhaps pair up with Scott and indeed I did. He became my life coach during my unemployment…as well as a close friend. Unfortunately, within months of starting our relationship, he was diagnosed with lymphoma. And within 6 to 8 months, passed away.

He, too, taught those around him how to live and how to die with dignity. Unfortunately, he also faced discrimination at the hands of our healthcare system in Indiana. Due to a loophole in our laws, he was unable to receive the care that he needed here in the state of Indiana because it was illegal for a person with HIV to be able to use their own blood or bone marrow for medical treatments, since it is illegal for people with HIV to give blood or be organ donors. This,of course, does not make sense in these cases…since it was for their own use and treatment. As a result of this discrimination, he had to fly out to California to seek the necessary treatment and by the time he got out there, it was too late.  They sent him back home to Indiana, where he lived out his final weeks with his hallmark smile and care for others.  The nurses on his floor, I remember, were particularly moved by Scott’s spirit…

Fortunately, his quiet legacy lives on, because his family took on the doctors and the hospitals…and with their support, got the law changed.  Now blood or bone marrow from an HIV/AIDS patient, for one’s own medical care, is  permitted in the State of Indiana. For those of us who know the story, we fondly call this the Scott C law. We know the story…and the legacy he left behind.

I think of Scott often when I use his life coaching techniques in my day-to-day life. And I think of Phil when I hear or see the Northernaires perform.

I love you both. Thanks for being my friend.