The Surprising Reasons People Aren’t Taking PrEP to Prevent HIV

Once a day, Trevor Allen, a 29-year old from Miami, swallows a little blue pill. It doesn’t affect his mental state. It doesn’t alleviate any illness, and it doesn’t dull any pain. Yet Trevor — and many like him — considers the medication an essential part of his health care routine. 

Allen’s compact pill is called Truvada, and it prevents him from contracting HIV. Commonly known as PrEP, short for pre-exposure prophylaxis, the release of this two-medicine combination pill marked a significant advance in the fight against AIDS when it became available in 2012. 

Although PrEP went on the market six years ago and has become increasingly easy to access through sites such as Nurx.com, only a small number of people who are considered high-risk for HIV are actually taking it. Among the estimated 1.1 million people who are thought to be strong candidates for Truvada, only 8 percent have a prescription, according to data released by the Centers for Disease Control and Prevention. 

So why hasn’t this seemingly miracle treatment, a preventative measure that boasts a 92  to 99 percent success rate, been swept off the shelves? Why aren’t people who are at risk of contracting HIV flocking to drugstores? Though the answer is nuanced and somewhat elusive, one thing remains clear: We as a society need to do a better job at getting medication into the hands of those who can benefit from it.

Here’s a look at the reasons for this lack of usage and also some stats to help explain the discrepancy.

Key Trends 

It’s important to note that the actual number of PrEP users may vary; this number is difficult to track because data isn’t centrally located.

The Southern United States has the highest number of new HIV diagnoses, yet has a disproportionately small number of people taking PrEP.

• The Southern U.S. comprised only 30 percent of all PrEP users in 2016, and yet the region represented more than half (52 percent) of all new HIV diagnoses in that same year.

Men and people age 25 to 44 are the most likely to take PrEP.

• In 2016, 93 percent of all PrEP users were male, which is roughly 14 times higher than the number of female PrEP users. Males accounted for 81 percent of all new HIV diagnoses in 2016.
• In the same year, 64 percent of all PrEP users were 25- to 44-years old. This age group comprised more than half (54 percent) of all new HIV diagnoses during 2016.

Between 2012 and 2016, the number of PrEP users inflated 880 percent, thereby averaging a 73 percent increase year over year during that time.

Reason 1: Lack of Awareness

The old adage says that ignorance is bliss, yet this can hardly be true when it comes to PrEP. Just ask the millions of people who aren’t even aware there’s a medicine available to help prevent HIV.

Although heterosexual contact accounted for 24 percent of new HIV diagnoses in 2016, there is surprisingly little outreach about PrEP within this community. Right now, it’s primarily LGBT health clinics that are spreading the word — not insurance companies, state officials, family physicians, or pharmaceutical companies. With smaller staff and smaller budgets, it’s no wonder these smaller clinics struggle to raise awareness.

It’s worth mentioning that awareness of the medication has been shown to substantially increase usage. In a 2014 study with 144 at-risk women in six different cities across the United States, many women were simply unaware of PrEP’s existence. When informed, they expressed anger that they hadn’t previously been knowledgeable about its availability, and many of them eagerly signed on as a patient.

Nurx continues to build awareness about this important preventative measure, with campaigns designed to target diverse populations in all regions of the country. 

Reason 2: Expense

In today’s climate of skyrocketing pharmaceuticals, it’s no wonder PrEP falls victim to a price increase. For people without insurance, it can cost upwards of $2,000 for a month’s supply. “If we don’t make it possible for those that need it to have access to it, we will continue to have new infections of a completely preventable virus,” said Jaasiel Chapman, clinical research community educator at the University of Cincinnati. 

Since many insurance companies recognize that the cost of HIV and AIDS treatment is far more expensive than preventative measures, most insurance plans cover a significant chunk of PrEP’s expenses. In the case where people don’t have insurance — or in situations where insurance doesn’t cover enough of the cost to make it feasible — there are financial assistance programs available.

For instance, Nurx makes it easy to access the following payment programs to compensate for lack of insurance coverage: Gilead’s Co-Pay Card, Gilead’s Advancing Access Card, and the Patient Advocate Foundation. More details about these programs can be found on the Nurx’s website.

Reason 3: Stigma

Stigma surrounding sex, gender identity, HIV, and drug use only serve as a means to amplify all the other obstacles preventing the most at-risk people from acquiring PrEP. There is already a well-known bias against patients with HIV and AIDS, as well as people who identify as LGBTQ. Coupled with physicians acting as gatekeepers of behavior, wherein they determine if someone is morally reprehensible or deserving of a medication, there is a natural tendency for certain groups to shy away from traditional health care. 

This internalized judgment sits comfortably with the external judgments people pass every day. In many communities, there would be an immediate sense of shame, humiliation, and fear if someone discovered a patient’s use of Truvada. 

Consider this: It wasn’t all that long ago that nearly everyone shared the belief that only men in the LGBT community would ever contract HIV. And to be sure, gay, bisexual, and other men who have sex with men bear the greatest burden of any risk group, representing an estimated 26,200 of new HIV infections. However, there is hardly a group of people unaffected by the disease.

In 2016, women accounted for 19 percent of new HIV diagnoses. Of these, 87 percent were attributed to heterosexual contact, and infected needles were responsible for 12 percent. 

In the same year, African Americans comprised 12 percent of the U.S. population and yet accounted for 44 percent (17,528) of new HIV diagnoses, thereby causing African Americans to have the highest rate of HIV diagnoses compared to other races and ethnicities.

Hispanics and Latinos represented about 18 percent of the U.S. population in 2016, yet accounted for 25 percent of HIV diagnoses.

Which brings us to PrEP. So long as we have these stereotypes embedded in our consciousness, these ideas that only “other” people acquire the disease or that contracting it somehow makes us “less than,” it’s difficult to convince people that a prevention medication is desirable, let alone necessary.

This is where a program that lets you maintain a degree of anonymity, such as that offered by Nurx, can help. Nurx strives to make health care accessible to everyone — including those among us who are too embarrassed, ashamed, or afraid to visit a traditional health professional. Don’t feel comfortable heading to a nearby clinic? No problem! Nurx can help you access important medication without ever stepping foot into your physician’s office or turning over your insurance card.

Reason 4: Doctors Can Refuse to Prescribe PrEP

For a variety of personal and professional reasons, doctors can refuse to prescribe PrEP. Let’s look at some of the reasons for this:

• If a health care provider doesn’t agree with the activities that may lead to HIV, he or she may outright refuse to administer the medicine. This is true even if a patient asks for PrEP and meets the criteria for it.
• In a study published in 2016, 78 percent of HIV specialists said they were very willing to prescribe PrEP to men who have sex with men, so long as the men were in a monogamous relationship. However, only 60 to 65 percent of these same clinicians were willing to prescribe it to men didn’t know the HIV status of their partner, who didn’t use condoms, or who had a history of STIs.
• PrEP doesn’t fit neatly into any specific medical practice. Initially, only HIV specialists prescribed Truvada. As such, many general physicians don’t feel comfortable or knowledgeable enough to prescribe the medicine. With this paradox, we have a stalled adoption of the medication and limited access to PrEP in clinical settings.
• There are very few HIV and infectious disease specialists in the world. An analysis by Mathematica Policy Research and the Lewin Group, a health care policy research and consulting firm, discovered that are only approximately 1,713 full-time HIV specialists in the United States in 2015. By comparison, we would need 2,215 full-time specialists to fill the need. Consequently, it is impossible for those who are employed to keep up with the 1.23 million uninfected people who the CDC deems PrEP-eligible, and many nonspecialists simply don’t feel confident enough to make a prescription of this sort.

It’s worth noting that anyone who meets the criteria for PrEP and is over the age of 18 can receive the prescription through Nurx. They make high-quality care more accessible and affordable for everyone, regardless of your lifestyle.

Reason 5: There Are Side Effects

As with any medication, there are potential side effects to taking PrEP. While rare, approximately 1 in 10 people report one or more symptoms that usually subside within the first few weeks of taking Truvada.

• Headaches.
• Weight loss.
• Nausea.
• Diarrhea.
• Stomach ache.

Reason 6: Criticism by Some Health Care Professionals

Some health care professionals have criticized PrEP, most notably AIDS Healthcare Foundation president Michael Weinstein. Despite many mainstream sources refuting his claims, his assertions play into a common narrative based on fear. Among other criticisms, skeptics of PrEP worry that people using the drug will be far less likely to wear condoms. As such, the rate of other STIs will skyrocket, they theorize, as will unwanted pregnancies. They have also expressed concern that the pill won’t be effective, namely because people may not take the medicine as prescribed.

Reason 7: Limited Access 

As mentioned earlier, the region where HIV infections have imploded is in the Southern United States. Yet these same areas — cities such as Atlanta, Jackson, and El Paso — haven’t expanded their Medicaid programs, an insurance option that covers all but a small fraction of the cost for Truvada. Given this, some of the most vulnerable populations can’t afford the preventative drug.

Other factors also play a critical role in limiting access for people most susceptible to HIV, particularly in southern states. Thanks to deep budget cuts, health clinics may lack resources to make sliding-scale payments feasible for low-income patients. Transportation may be insufficient, especially in rural areas, making routine doctor visits nearly impossible. Finally, public health departments may be so tight on money that they aren’t able to meet the prevention needs of their community. 

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