HIV Prevention: Living HIV-Free with PrEP

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HIV Prevention:

In 1987, the FDA approved AZT, the first treatment for acquired immune deficiency syndrome (AIDS). At the time, AIDS wasn't curable. Of the more than 32,000 Americans who had tested positive for the human immunodeficiency virus (HIV) that causes AIDS, almost 60% had died.

AZT offered the first glimmer of hope that we might one day stop AIDS.

Randy Gould

Randy Gould was only 12 years old in 1987. When he came out and started dating 16 years later, HIV was still a specter hanging over the gay community.

"I remember those early days of taking an HIV test and freaking out every single time," says Randy, who is now 47 and a sales executive in New York City. "Whenever I had a sore throat or a cough, I wondered, 'Do I have it?' "

A Lot Has Changed

In the past few decades, researchers have made many gains in the fight against the virus. HIV-positive people can now take antiretroviral therapy (ART) to stay healthy and avoid transmitting the virus. Pre-exposure prophylaxis (PrEP) medications protect HIV-negative people from getting the virus through sex or injected drug use.

PrEP stops the virus from multiplying in your body if you're exposed to HIV. It can reduce your risk of getting the virus through sex by around 99%, and through injected drug use by 74% or more. But not everyone who could benefit from PrEP takes it. Only 1 in 3 gay and bisexual men at risk for HIV are on this preventive medicine.

One big barrier to using PrEP is a lack of awareness, says Samuel Merrick, MD, a professor of clinical medicine at New York Presbyterian-Weill Cornell. "People have no idea that there is something you can take that can prevent HIV."

"Once you're able to sit with someone for a few minutes and explain PrEP, usually people feel pretty comfortable about it," says Merrick, who is also medical director of the Center for Special Studies, the Adult HIV Clinic at Weill Cornell.

Educate Yourself to Reduce HIV-Related Anxiety

Why I Decided to Take PrEP

Randy Gould

Randy says it wasn't originally his idea to take PrEP. "The nurse practitioner at my doctor's office handed me a pamphlet and said, 'We're recommending that gay men of your age who are sexually active take this,' " he says.

He wanted to do some research. "I was definitely interested, but my first thought was, 'I've got to take a pill every day. What will it do to me?' "

After a few weeks of thinking on it and some coaxing from his doctor, Randy made the decision to get on PrEP. He says most of his friends are on some form of PrEP, too.

He doesn't regret his decision. "When I came out and there wasn't PrEP, HIV was always hanging over my head. The possibility of it was always looming," he says.

Now? "I don't think about it as much."

Why Aren't More People on PrEP?

A lack of awareness is just one reason more people don't use PrEP. A few other barriers that stand in the way include:

Stigma.

More than 40 years after the discovery of HIV, negative stereotypes about the virus are still out there. Stereotypes exist that people at risk are sexually loose and immoral. Black and Hispanic Americans are at highest risk for HIV, and they face the greatest stigma.

As a result, "People are not comfortable identifying as at-risk. They don't want to bring it up with their health care provider," Merrick says.

Doctors don't get it.

You'd think doctors would be the most informed about PrEP. But fewer than 1 in 5 doctors have prescribed it to their patients, and only 1 in 3 are willing to prescribe it. A lack of training, negative attitudes about PrEP, and uncertainty over choosing the right people to take PrEP are some of the reasons why more doctors don't write this prescription.

"Even if they're aware of it, they're not comfortable with it because it seems exotic and complicated and they're not familiar with the side effects," Merrick says. "Which is a bit silly, because it's pretty straightforward." PrEP is safer than many of the other medications primary care doctors prescribe, he says.

Fear of side effects.

It's normal to worry about side effects with any medication, but that fear sometimes prevents people from starting PrEP or staying on it.

The reality is that PrEP is safe. Most of the side effects it causes are mild, like headache, diarrhea, stomachache, and nausea. They should go away once you've been on the medicine for a few weeks. "When you compare them to the risk of acquiring HIV if you're in the group that's at higher risk, it's a pretty clear trade-off," Merrick says.

Rarely, these drugs cause more serious problems with the kidneys or bones. Your doctor will monitor for any complications during routine checkups while you're on PrEP.

Cost.

Once Randy made the decision to go on PrEP, he still had a few hoops to jump through with his insurance company, which didn't want to cover the cost. With a price tag of around $2,000 a month, "It was one of the most expensive medications I'd ever been on," he says.

The Affordable Care Act requires most private insurance plans and state Medicaid programs to provide PrEP at no cost. "That doesn't mean some insurance companies don't try to put up barriers, which they try to do with anything that's expensive," Merrick says.

Having no health insurance can be a "huge barrier," he says. Financial assistance for PrEP does exist, but it may be hard for some people to find or get. Some states, including New York, have PrEP assistance programs. In states without these programs, copay help is sometimes available from the companies that make PrEP.

Bias.

You may be more comfortable taking PrEP if your doctor suggests it. Yet some doctors don't recommend this medication equally to all their patients. Research finds that doctors are less willing to prescribe PrEP to Black patients than to white patients. This difference in prescribing could stem from unconscious biases or racial stereotypes.

Practical HIV Prevention Tips

PrEP Is Just One Part of Prevention

Randy says PrEP has eased his fear of HIV, but it can be a double-edged sword. "Yes, you're preventing HIV, but you're not preventing STDs. The problem in the community is that people think, 'I'm taking this, I'm OK. I can do whatever I want,' " he says. "You still need to be aware of everything else you can contract."

Other preventive measures like condom wearing, limiting your number of sexual partners, and knowing your partners' HIV status will give you even more peace of mind.

While you're on PrEP, you do have to remember to take a pill every day or see your doctor every couple of months for shots. But in time, PrEP should become just as routine as taking a daily vitamin.

Randy has been on PrEP for 9 years. He doesn't have to think about it anymore. "It's not a big deal. That's what I want people to know," he says. "But it is a big deal to know I'm taking something that's going to protect me."

Reviewed by Neha Pathak, MD, on Dec. 14, 2023

Sources

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BMC Public Health: "The relevance of pre-exposure prophylaxis in gay men's lives and their motivations to use it: a qualitative study."
Catie: "Post-exposure prophylaxis (PEP)."
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HIV.gov: "Black Communities: Facing HIV Together," "Pre-Exposure Prophylaxis," "Who is at Risk for HIV?"
Journal of Acquired Immune Deficiency Syndromes: "Providers PrEP: Identifying Primary Health Care Providers' Biases as Barriers to Provision of Equitable PrEP Services."
Kaiser Health News: "HIV Preventive Care Is Supposed to Be Free in the US. So, Why are Some Patients Still Paying?"
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PrEP Daily: "What are the Side Effects of PreP?"
Randy Gould, sales executive, New York City.
Samuel Merrick, MD, professor of clinical medicine; medical director, Center for Special Studies, the Adult HIV Clinic, New York-Presbyterian-Weill Cornell.
Virginia Department of Health: "Frequently Asked Questions About PrEP."
Washington Health Institute: "What is PrEP and How Does it Work?"
World Health Organization: "HIV."

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