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 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