Each year, millions of people in the U.S. get tested for HIV as part of their routine health care. But just as many people avoid these check-ins due to stigma and fear of what they will discover—according to Centers for Disease Control and Prevention (CDC) findings, fewer than 40% of Americans have ever had an HIV test.
That fear is completely understandable because, even as HIV is treatable, the prospect of living with a chronic infection for the rest of one’s life can be overwhelming. That’s why TheBody recently spoke with David Malebranche, M.D., M.P.H., an internal medicine physician based in Atlanta specializing in HIV treatment, about the most important things to keep in mind when processing a positive diagnosis.
At the top of his list, says Malebranche, is to keep in mind that there is no “cookie-cutter template for dealing with HIV.” He recalls that when he was diagnosed with the virus in 2007, he had already been treating people living with HIV for 10 years and knew what to do. However, when his own doctor confirmed as much and asked if he wanted to start taking medication immediately, he responded, “Pretend that I’m not a doctor. What would you tell me?”
Juan Michael Porter II: Right, because even if you are an expert, you’re still a vulnerable person with needs. What did your doctor say?
David Malebranche: He told me to start the medication immediately. After hearing that, I was good. But everybody is different. I have had people start crying after I told them that they’re living with HIV. A young man I’m treating hasn’t started his meds yet. He cries every time he comes in because he’s still grieving his previous life, and we sit and talk every single time I see him.
Porter II: I feel like talking always helps. Especially if someone is feeling dejected.
Malebranche: It does. This past Monday, I was going to give him a one-month supply of medication until his ADAP [AIDS Drug Assistance Program] kicks in. I told him, “You don’t have to start until you’re ready. Just take these home.” But he knows that once he starts, he has to stay with it—and that makes it more real.
Porter II: The fact that he is living with HIV?
Porter II: I think it is difficult for some people to understand that swallowing a pill every day in order to stay alive can be really depressing. Did your patient take the samples?
Malebranche: Unfortunately, we were out of them at the time. I think he was relieved, but I know he’s gonna come back, so I’m not worried. Though some doctors would say, “You need to get him on meds right now! All the studies say—” I already know what those studies say, but I also know that this is a 27-year-old human being who is struggling. I’m not gonna shove pills down his throat, especially because his viral load and T-cell [count] are OK for right now.
So, I watch him closely because it’s more important for me to get him to take this big step rather than shove it onto him literally and figuratively. People cope with things in different ways, but I think the bigger picture is talking to people and encouraging them to go with how they feel at the time.
Porter II: You mean their emotional health?
Malebranche: Yes. A big push in the HIV movement is rapid treatment: You get people in, you find out their diagnosis, and then, boom! “You’re on Biktarvy.” But some people need to process their diagnosis, even though a lot of the messaging is, “We have to keep the community viral load down, and if you don’t get them on meds, then you may lose them.” Actually, we lose them when we try to force them to do stuff they’re not ready for.
Porter II: I hadn’t thought about that. I understand the panic to get people on meds right away, but I also know people who needed time before they started. What’s a better approach for this?
Malebranche: Listening. Not talking—asking a question and listening. Ask patients what they want to do, give them their options, and let them choose. Some people will be like, “Yeah, bitch. Give me the pills now. Tell me which one’s best. You’re the doctor. I trust you.”
Some people are very businesslike. They say, “Thank you. Let me move on. I’ll see you in a month.” Other people need to figure it out on their own. I offer them information, they take it home, we circle back on the phone or have a virtual visit, but eventually, they figure it out. Unless someone is in a dire situation and needs to start antiretroviral therapy immediately, I think doctors and providers have to give their patients options.
Porter II: This is a reminder that there is no singular way to process an HIV diagnosis. But, regardless of how one deals with seroconversion, the medical response should be centered on the patient’s needs rather than a ready-made checklist.
Malebranche: Checklists are important so that steps don’t get skipped, but the whole template with a lot of clinics is, “Get the social worker on board, and get this person here to do this or that.” That can get dehumanizing and rob people of their agency.
Porter II: Right! Like, “I get that you want to save my life, but can you still treat me like a person?” Otherwise, I’ll fall out of care.
Malebranche: I’ve had patients say to me, “Oh my god! That doctor got on my fucking nerves. They left me in that room and had me waiting for the social worker, and I didn’t want to talk to somebody I didn’t know. I just wanted to talk to the doctor that I was with.”
Porter II: Especially if you already had a bond with that doctor or were looking to them specifically for help.
Malebranche: It’s interesting because that’s the difference between the algorithm of medicine and the art of medicine. The art of medicine will dictate that you say, “How can I be there for you in the best way?” Or, “What can I do? Here are your options. Would you like to speak to a social worker? Would you like to speak to somebody from mental health? Do you just want to sit in the room for a little bit with me and talk? Do you want me to step out for a little bit so you have a moment? Is there anyone who you’d like to come be with you?”
And then we have options. We have ways to give them what they want, so if the patient says, “I really think I’m about to break down. Do you have a therapist or social worker I could speak to?”—we absolutely do. Or if the response is, “No, doc. I’m good. I got a lot of friends living with HIV, and I know what to expect. Can you give me the pills?”—we can do that too. It’s important that we let them drive the bus.
Porter II: Is that your approach?
Malebranche: Yes. I’m all about options and tailoring the treatment to the person in front of me.
Porter II: I like that word: tailoring. It sounds like you’re tailoring a suit to fit a specific patient, rather than trying to squeeze them into something that worked for someone else.
Malebranche: Again, that’s the art of medicine. I had a student at Morehouse College who had been misdiagnosed with the flu. So we did blood work and learned that he was living with HIV. He was shocked, but he didn’t go crazy. After giving him the option to talk, he was like, “To be honest, Doc, it’s 11:30 and I have a presentation I need to give at 1.” That motherfucker went and gave that presentation for his class and then came back to see me afterwards.
Most people would cringe at that, because they think, “He’s not gonna be in the emotional state to do that.” But something about this kid told me that he knew what the fuck he was doing. He was very much about taking care of his classwork and was like, “It’s going to wreck me if I have to come back to this presentation that I’ve been planning all month, so I’m going to finish this and come back to see you.” And he did.
Everybody is different. Yes, we have algorithms, cookie-cutter approaches and templates that we like to go by, but those things aren’t set in stone, because human beings aren’t set in stone. And medical professionals have to be flexible with the variety of human reactions they’re going to receive. Especially when they’re dealing with an HIV diagnosis, which can be all over the map.