So why aren’t we making it more accessible for those who are most at risk?
New research shows that great strides are being made to lower HIV infection rates among populations that are most at risk.
Despite this, the medication that has been credited with helping reduce infection rates remains under the radar, and sometimes out of reach, for those who need it most.
In 2016, researchers in Australia started following 3,700 men who were given pre-exposure prophylaxis (PrEP), a treatment of medications that when taken daily by people who are HIV negative, is said to reduce risk of contracting HIV from sex by more than 90 percent, according to the Centers for Disease Control and Prevention (CDC).
Some estimates put this as high as 99 percent effectiveness. PrEP also reduces risk from drug-related infections by more than 70 percent.
This new study, published last month in The Lancet, is said to be the first to look at a population-specific rollout of PrEP among men who have sex with men.
Implementing PrEP in this community was shown to lead to a 25 percent reduction of overall HIV diagnoses across New South Wales, Australia compared to the year before the study started.
The decline was even more noticeable in recent HIV infections compared to the previous year. That number marked a 32 percent decline, greatest in men 45 years or older.
For the researchers behind the study, the speed with which PrEP was able to lower HIV rates was a pleasant surprise.
“The rapidity and size of the effect was startling. Before the study, we knew that based on randomized controlled trials, PrEP would be efficacious at the individual level. In addition, mathematical models had predicted that PrEP could have a large and fast impact if rolled out rapidly and at high coverage for people at risk,” lead author Andrew Grulich, PhD, head of the HIV Epidemiology and Prevention Program at the Kirby Institute, a medical research organization affiliated with the University of New South Wales, told Healthline.
He said that if you zero in on population subgroups, the declines were even starker. Australian-born men who have sex with men, and men who lived specifically in Sydney’s gay neighborhoods saw a 50 percent decline.
What’s the big picture?
“The data demonstrate that rapid, targeted, and large-scale implementation of PrEP in men who have sex with men can rapidly turn an HIV epidemic around,” he stressed. “Previous studies have shown individual-level efficacy, but have not investigated population-level effectiveness.”
Medical professionals highly recommend PrEP to people who might be particularly at high risk for contracting HIV.
Sold under the brand name Truvada here in the United States, PrEP is actually two separate drugs in one small blue pill — tenofovir and emtricitabine.
Right now, Truvada is the only drug approved by the Food and Drug Administration (FDA) to be used for a daily PrEP regimen to protect against HIV.
People considered at high risk are gay and bisexual men, as well as other men who have had condomless sex or been diagnosed with a sexually transmitted infection (STI) in the past half year.
PrEP is also recommended to heterosexual people who have sex with partners who might be at high risk, as well as people who are intravenous drug users.
People who go on PrEP are required to return to their healthcare providers for checkups and HIV and STI testing every three months, according to the CDC.
Approved in 2012 by the FDA, PrEP was heralded as a major breakthrough in the fight against the now-four-decade-long HIV epidemic.
But it hasn’t been free of controversy.
Truvada’s U.S. manufacturer, Gilead Sciences, has come under attack over the rising out-of-pocket costs of the drug.
Right now, its list price is $2,000 for a 30-day supply of the pills. This can be a prohibitive hurdle for people who are uninsured or underinsured.
However, there are some financial assistance programs through individual health departments and Gilead itself offers a copay coupon assistance program to people who are commercially insured.
That being said, advocacy groups like ACT UP have made protesting Gilead and its steep pricing of the drug a key part of its current activism.
Dr. Robert Gross, co-director of the Penn Center for AIDS Research at the Perelman School of Medicine at the University of Pennsylvania, says that research like the Australian study doesn’t confirm anything we don’t know already. He said its real effectiveness is driving home why it’s crucial that people at risk for HIV have access to and adopt a PrEP regimen.
“I think people should look at these results if they are at risk — well, they should have already been looking at all the prior results showing the effectiveness of PrEP, and they should be speaking to health departments, departments of public health, they should be impacting the policy makers to pay attention to the benefits of PrEP,” Gross told Healthline.
“This study is really an excuse to get the word out. What are people waiting for?” he added.
One of the biggest road blocks to getting more U.S. people on PrEP is combatting some structural barriers that exist within the medical community.
Gross said that a study like this new one needs to be looked at as something very specific to its community and country. The healthcare system in Australia is very different than here in the United States.
The healthcare infrastructure there makes it possible for this kind of drug to be distributed for free in a more accessible way.
Damon L. Jacobs, who has been a public advocate and educator about PrEP, says that a lot needs to be done to spread greater awareness and acceptance of PrEP in this country.
“Yes, the Australia research is good — we need more — but until the U.S. is prepared to deal with the inherent racism and homophobia embedded in the medical community, we won’t see this kind of impact outside of white demographics,” Jacobs told Healthline.
Recent CDC data shows that 77,120 people were using PrEP in the United States in 2016, according to AIDSVu — a small number when compared to the 1.2 million total people who are said to be most at risk for HIV.
Tying in with Jacobs’ critique of the current climate in the U.S. is the fact that 50 percent of PrEP users live in just five states — California, Florida, Illinois, New York, and Texas.
On the flip side, the American South has the highest number of new HIV diagnoses each year — 52 percent of all new HIV diagnoses in 2016 — but only accounted for 30 percent of PrEP users that year.
Essentially, the medical and health communities need to do a better job of bridging some of the cultural, economic, and geographic disparities between who’s actually on and who still needs PrEP.
“Cost and affordability is a huge piece,” Gross added. “Health departments need to make a greater effort. We don’t live in a country like Australia, this country doesn’t have a universal healthcare system, so there needs to be ways to make PrEP inexpensive and easier to access.”
Jacobs, a licensed marriage and family therapist based in New York City, says he first started to became aware of his sexuality in the summer of 1985 as the media storm around actor Rock Hudson’s AIDS diagnosis started to explode.
“It became embedded in my synapses then and there: ‘if you have sex with men that’s what will happen to you,'” Jacobs, who is openly gay, told Healthline.
“Over the next 15 years or so, I knew and lost so many friends, lovers, clients, teachers, roommates, acquaintances to AIDS. My trauma and grief of seeing death so closely and vividly informed every intimate experience I ever had. I never even had condomless sex until 2004, and that was with a primary partner where we both went and got tested,” he said.
Jacobs decided to go on PrEP and admitted that during the first year of using it he didn’t “trust it was going to work.”
In 2012 he had sex without a condom with an HIV-positive partner and he said that he “didn’t feel fear” for the first time.
“It felt glorious, I felt high, and I could feel sexual pleasure for the first time in my life — at age 41 — I felt control. I felt mastery. I felt invincible,” he said.
Feeling empowered from this experience, Jacobs said that “PrEP has infiltrated and affected every part of my cells, not just protecting me from HIV, but allowing me to experience a wonderful new reality I didn’t think was possible.”
Jacobs started using the drug in July 2011, but was afraid to be very vocal about it until the FDA approval came in 2012. He started sharing this information with colleagues and club owners who would allow him to talk about vaccines and health information in their clubs.
Eventually, these person-to-person conversations led to an appearance on Huffington Post Live to talk about PrEP.
He said that this was the first time any person had spoken about PrEP use as a single man intending to have condomless sex with HIV-positive partners publicly on such a wide platform.
More media appearances as well as teaching and speaking engagements followed shortly thereafter.
Most recently, he traveled to Australia to teach about PrEP use in a series of talks. He also started the first and — at the moment — largest social media group on Facebook to talk about all things PrEP called “PrEP Facts.”
Gross said having people like Jacobs be clear and informative about PrEP in public forums like this can be incredibly useful for people who are on the fence about whether or not to go on the pill.
However, he cautioned there’s a lot of misleading information and unhelpful “myths” that he sees often perpetuated online.
“There are some people who are particularly at high risk — they could be gay-identified, gay or bisexual men, or transgender women, for instance — who say ‘it’s inevitable that I’ll get HIV, why bother taking a pill once a day when I’ll end up on a pill once a day anyways for HIV?’ Well, PrEP is actually two drugs in one pill, but it is more for HIV — a compound of multiple medications. Why would anyone want to be on four [medications] when they could be on two?” Gross said.
He added that there are also a lot of myths out there about the side effects of PrEP.
“There is very strong data that this combination drug is very safe. There’s very little in terms of long-term side effects,” Gross said.
He explained that some people throw around myths that people could develop a resistance to HIV while on PrEP.
There have only been three officially reported cases of men on PrEP who contracted HIV while apparently still adhering to the drug.
A case of a possible fourth was presented this year at the Conference on Retroviruses and Opportunistic Infections.
Gross stressed that these are extremely rare, isolated incidents.
Jacobs added that another myth that exists is that the medication will severely damage your kidneys. There have been some cases of kidney changes in men over the age of 40 who had preexisting medical conditions.
However, medical professionals will monitor and test to see if there are any changes in kidney function among people who decide to go on PrEP.
Some studies have also surfaced pointing to modest rises in STI rates among PrEP users engaging in condomless sex.
Gross said that his job often means he has very frank, honest conversations with patients about what they are and are not comfortable with when it comes to their sex lives.
He said some men on PrEP don’t necessarily want to adopt condoms into their sexual practices if it will “compromise their sexual pleasure.”
“I still encourage patients to use condoms to avoid chlamydia, gonorrhea, and syphilis. I don’t judge them if they don’t — people get to make their own decisions,” Gross said. “There is a group of men who might not be able to talk about condom use with their partners. Their partners might not permit them to. When it comes to intimate partner violence, sometimes people who try to negotiate bringing condoms into their relationship could be put in a very vulnerable position.”
“PrEP can be less dangerous to negotiate if one partner is resistant to the idea, they could hide that they are taking it as a way to protect themselves,” Gross added.
Jacobs said he wants to emphasize that people on PrEP have to go in for regular STI tests with their healthcare providers, and people on the drug end up having more immediate, regular, and documented testing for STIs.
So, what’s next?
When it comes to the Australian study, Grulich said he and his team were heartened by the fact that their research demonstrated “that speed, scale, and targeting will help maximize the population-level benefits of PrEP.”
“This approach allows us to impact an HIV epidemic in a way that hasn’t previously been feasible,” Grulich added. “PrEP implementers should be ambitious and organized in their roll-out and should be bold. Small-scale roll-out targeted only at individuals will not impact an epidemic. Only large-scale, targeted, rapid roll-out can lead to the sort of herd protection that is required for high-level impact.”
Moving forward, he said he hopes to continue the implementation in New South Wales.
“We are prompting PrEP to foreign-born gay men and through public funding of PrEP. It has become more available to gay men around Australia,” he said.
What about the United States?
From an activism and education perspective, Jacobs says a lot more needs to be done.
“When I started talking publicly about PrEP in November 2012, hardly anyone knew about it. A lot has changed since then, but I am told that gay and bisexual men of color in certain areas, particularly the South, are often still unaware of its existence. And then, when they do learn, it is often perceived as a drug for ‘privileged white men.’ And then, when they learn it is available and accessible for them individually they don’t have a clinic where they can go to get it,” Jacobs stressed.
He said it’s all too common for these people seeking out PrEP to be “slut shamed” and be dismissed by their doctors for perceived promiscuity.
He said affluent white communities in places like San Francisco, New York, and Seattle have largely embraced PrEP.
Yet, this isn’t the case in communities of color and economically disadvantaged parts of the country.
“Outside of these areas, it remains unknown, misunderstood, stigmatized, underutilized,” he said. “If I was in charge, I would find the leaders in those communities — drag queens, ball competition winners, athletes, religious or spiritual leaders, trusted elders — and get them involved in grassroots community-based peer-run education and information and make sure they are telling the truth about PrEP, not lies that can easily be disproven in seconds by any medical journal in any Google search.”
He added, “Trust is key here, and if educators consistently violate the trust, as they are often doing now, it will further destroy the relationship between consumers-at-risk and healthcare workers.”