Do You Know About HIV?

Dr. Gretchen Arnoczy serves patients in FirstHealth's Infectious Diseases Clinic and FirstHealth's hospitals. In recognition of World AIDS Day on Dec. 1, she wrote the following piece about the importance of HIV/AIDS education.

I’ve been a local HIV doctor for more than 13 years. When I first arrived, that wasn’t the original plan. Most people thought we didn’t have that many people around here living with HIV, but really, they were just driving elsewhere to get their care.

I quickly learned who wasn’t making the drive when I met them in the hospital. Seeing someone hospitalized with AIDS always guts me. It’s preventable. We can treat and prevent AIDS. I was only here six months before I said, “ENOUGH. I know how to do this and it’s not as hard as you think.” I started treating patients living with HIV.

I grew up in Florida and was raised by Pennsylvanians. I said "Y'all," and my parents hated it. I consider myself a Southerner, but an adopted Southerner. I love it here. Cheese grits, Cheerwine, and southern hospitality? Sign me up.

The southeast United States has about 37% of the US population but 45% of people living with HIV. Almost half of the people living with HIV in the U.S. live in the South.

Do you know about HIV?

A lot of my non-medical friends don't. People my age remember red ribbons, Ryan White, Magic Johnson, and AIDS as a death sentence. People remember the "cocktail" of medications that was complicated and difficult. A nurse in the hospital pulled me aside and asked, "My cousin was just diagnosed with HIV... what should I expect? I just want to be ready."

She seemed to be bracing herself for the worst. I said, "I'd expect he'll take a pill every day and live a long healthy life."

I made a mental note to work on an HIV talk for the next nursing education week. It's not like it used to be. It's not like "Rent." Did you notice that Magic Johnson is fine? He is a healthy billionaire diagnosed with HIV more than 30 years ago. He doesn’t get secret treatments. Everyone can get those treatments.

Most of my patients take one pill once a day with very few side effects. Most of my patients see me every six months where we talk about their lives – full-time jobs, travel plans, kids, how their favorite football team is doing - before doing a quick exam and a blood draw and a hug and see you next time. Some of my patients get injections every two months and don’t take pills at all. Most of my patients are fine.

If their viral load is undetectable (more than 90% of our clinic), then they're also not contagious. They can get transplants. Their partners don’t get infected. They can be an organ donor to other HIV patients. They can (and do) get pregnant - then bring their adorable HIV-negative kids to clinic visits where my staff supplies coloring sheets and crayons while they wait.

People living with HIV have a normal life expectancy. I used to tell patients they'd have to take a pill for the rest of their life, but some of my patients have 50+ years of life ahead of them. I tell them they will take a pill until there’s a cure, and then we'll cure them. I’m an optimist, but I bet I’m right.

I tell them, "Managing this is easier than diabetes."

HIV is transmitted through sex and blood. You don't get it from kissing, you don't get it from a hug, you don't get it from sharing a Cheerwine.

I remember a person living with HIV telling me why they don’t go to their sister's house. He frowns, "They made me eat on plastic." Everyone else was eating on the good china and he had a disposable plate. You don’t get HIV from dinnerware. I’m sure she was just worried, but it made him feel terrible.

I remember a patient with AIDS. He was diagnosed with HIV 8 years before I met him, and the first clinic he went to arranged for medicine to be delivered to his house, for free, every month. All he had to do was answer the phone when the delivery company called so they could confirm when he'd be home. He took the first month of medicine and never answered the phone again. He changed his number. He never went back to that clinic.

I met him when he was hospitalized with AIDS many years later. He was sick. I asked him why he never answered the phone. He answered quietly, "What if someone saw the pill bottle?"

This is the quiet bargain a lot of patients make. They'd rather die. It sounds like an overdramatic teenager's eye-rolling statement but it's the choice they make. They choose to die rather than risk the people they love knowing they have HIV. Hey everybody - listen up. We need to fix this.

Can you imagine someone you love choosing to die of a completely treatable disease because they don’t want you to find out they have it? We need to fix this. Because sometimes the family finds out.

And sometimes it changes everything. The next thing you know mom is driving to the visits, sister is texting medication reminders, cousin calls my office to ask if the patient would be a candidate for a clinical trial he found on the internet. That family is supportive, loving and helpful. All that worry for nothing. And suddenly my patient who lived in and out of the hospital becomes an undetectable-viral-load superstar. Soon my every-six-month hugs include whichever sister/cousin/grandma came with them – they rode along and they’re going out to lunch after the appointment.

I tell patients the diagnosis is no one's business but their own, but it is a lot easier with support.

Maybe this World AIDS Day you could commit to being that kind of family for the people you love. You could casually tell everyone you know that you learned a lot about HIV. You learned how treatable it is now. It's just an infection. It's nothing to be ashamed of. It's a manageable problem. Easier than diabetes.

You could work into the conversation that if anyone YOU love had HIV, you'd hope they were getting treatment and taking good care of themselves. You could mention that if anyone YOU love needs any help or someone to talk to - you've heard that there are some great lunch places near the clinic.

You know, drop it into conversation - over cheese grits and Cheerwine.