Jake Mason will never forget the response he received when he asked for a Truvada prescription to prevent HIV at a clinic in Los Angeles.
“The first thing the doctor said was ‘Why do you want to be a cum dumpster?'” Mason alleged, adding that he couldn’t remember the doctor’s name. “He said, ‘Well, I just think you want to be on it so you can sleep with whoever and not use condoms.’ I said, ‘First, that’s not the reason why, and second, it’s none of your business.'”
He left without a prescription.
Truvada has long been used to treat people already infected with HIV. But in 2012 the Food and Drug Administration approved Truvada for use as a “pre-exposure prophylaxis,” or preventative drug treatment, to reduce HIV transmission. When used in this way, it’s called PrEP and pronounced “prep.”
And in 2014, the Centers for Disease Control and Prevention recommended the daily pill for anyone who uses injectable drugs or has unprotected sex with partners of unknown HIV status.
“The guidelines are based on strong evidence from clinical trials of [pre-exposure prophylaxis] use in high-risk populations,” the CDC wrote on its website.
Last summer, the World Health Organization recommended that all men who have sex with men consider using PrEP.
Despite the broad recommendations, those who want to take Truvada as a preventative measure say there are obstacles to actually getting the drug. For some, it’s stigma. For others, it’s that their primary care physicians say they don’t know enough about the drug to prescribe it. And once they get a prescription, the price tag can be prohibitive.
Only 8,512 people started taking Truvada as a a preventative treatment for HIV between January 1, 2012 and March 31, 2015, excluding study participants, according to Ryan McKeel, a spokesman for Gilead Sciences, Inc., the pharmaceutical company that manufactures Truvada. Gilead made headlines last year for its hepatitis treatment that cost $1000 per pill.
Related: How Washington DC Cut Its Epidemic-Level HIV Rate by 40 Percent
Truvada is a combination of two antiretroviral drugs called tenofovir and emtricitabine, which are typically part of a larger drug cocktail used to treat people with HIV to keep the virus at bay. When given as a preventative drug treatment, or PrEP, to people not yet infected with the HIV, the pill can prevent the virus — but it only works if patients take it every day.
In a clinical trial funded by the National Institutes of Health, uninfected men taking Truvada were 44 percent less likely to contract HIV than men taking a placebo. But when researchers looked only at men who had detectable levels of the drug in their blood, indicating that they took it regularly, they found that there was a 92 percent risk reduction. In other words, those who skipped doses were significantly less well-protected against HIV.
The same group of researchers estimated that PrEP is 99 percent effective at preventing HIV transmission when taken every day as directed.
Still, PrEP is by no means a panacea, and it’s not for everyone, said Patrick Wilson, PhD, a professor of sociomedical sciences at the Columbia University Mailman School of Public Health. He also said people using it should be cautious and use condoms.
Jim Pickett, who directs prevention advocacy and gay men’s health programs for the AIDS Foundation of Chicago, said that the negative connotations surrounding Truvada’s rollout as PrEP reminded him of the early days of the women’s birth control pill. Wilson agreed.
“There was a lot of attitude and a lot of shaming,” Pickett said. “If you were the kind of woman who wanted oral contraception, you were a bad person.”
Pickett said PrEP comes with the same kind of judgement. He started a blog for people to share their experiences with the drug, which includes a number of horror stories like Mason’s. One man described a verbal ping-pong match with his doctor, who told him PrEP was only for sex workers, and if he took it, he could break a hip and die.
But the stigma surrounding PrEP can be more subtle.
Lee Knight, 55, of San Diego, California, said that as he was undergoing testing and counseling to get a PrEP prescription at a Kaiser Permanente clinic when he was given a piece of paper that said if he tested positive for a sexually transmitted infection while on the drug, his doctors reserved the right to discontinue the prescription.
“I think I felt that there was a huge narrow judgment about me as a gay man that was informing that decision,” he told VICE News, adding that even among gay men, taking PrEP is mistakenly associated with promiscuity. “It’s a stereotype that’s in people’s heads. I think that informed the whole process where they gave me — the grilling about my sex life.”
Knight complained to the clinic’s management, who he said were receptive to his complaint and eventually changed the policy. Kaiser was unavailable for comment.
Related: Want to Combat AIDS? Decriminalize Sex Work, Researchers Say
Mason, whose first doctor allegedly suggested that he wanted to become a “cum dumpster,” eventually went to his primary care physician and demanded that the doctor look up Truvada as a preventative treatment for HIV. The doctor listened, conducted some research, and eventually wrote the prescription.
A common refrain among doctors who don’t want to prescribe PrEP is that it doesn’t prevent other sexually transmitted diseases or infections, but Mason said comparing HIV with infections like gonorrhea isn’t right.
As a gay man growing up amid the AIDS epidemic, Mason said there’s an ingrained fear that having sex can kill you.
“It’s not even comparable,” Mason said. “I had a condom break and cried for four days straight. I went to the doctor and got tested a million times.”
Related: Related: HPV Vaccination Is Safe and Effective — So Why Don’t More States Require It?
The Centers for Disease Control and Prevention told VICE News that new drugs can take time to become mainstream, but it’s working to promote awareness about PrEP among clinicians on several fronts. Still, uptake has been slow.
“I could definitely see that as a potential stumbling block, particularly if men have doctors who aren’t as familiar with PrEP and the use of ART [antiretroviral therapy] as a preventive tool,” Wilson, who has studied attitudes toward PrEP and condom use, told VICE News.
VICE News spoke to a Dallas nurse who wanted to obtain PREP so she and her husband, who is HIV positive, could have a baby, but the process took nearly eight months, and several doctors turned her down, including her primary care physician and her obstetrician/gynecologist.
“They used verbiage of ‘This is hairy territory,’ and ‘This is really not supported,’ even though it is FDA approved,” said the woman, who chose to remain anonymous. “One of the doctors basically just said, ‘Nobody supports doing this.'”
They told her they would only perform intrauterine insemination to help her get pregnant, but it would have cost more than $10,000 for the procedure alone, which insurance doesn’t cover. Moreover, she would have needed to pay for drugs and sperm-washing. She couldn’t afford it.
Eventually, she found an infectious disease doctor willing to provide her with PrEP and she found out this month that she’s pregnant.
“We did ultimately end up getting PrEP, but, I mean, the road to getting it was not the easiest,” she said, adding that at times they wondered if a baby wasn’t in the cards for them.
Pickett said there’s also a lot of misinformation surrounding the drug, and doctors sometimes overstate the risks associated with it.
Side effects typically include upset stomach and loss of appetite, which both eventually subside, according to the CDC. Giliead’s website says less common, but more serious side effects can include liver problems and lactic acid build-up. Decreases in bone density were also reported.
Related: WHO Recommends All Gay Men Take HIV Treatment Drugs
Knight said it took weeks for him to get a preventive prescription for Truvada, not to mention hundreds of dollars in lab work. Once he got it, the pharmacist told him it would cost him $1,400 out of pocket. He decided to go home without it.
Another patient, Z’ev Hadash, 42, of South Florida, said he initially was able to get Truvada for $60 a month from his longtime doctor, but when the Affordable Care Act passed, he had to switch plans, find a new provider, and “come out” all over again. Then, he asked for PrEP again.
“He said, ‘I’ve never heard of such voodoo’ and I was left to find another doctor,” Hadash said. “It took me five doctors to find one willing to write the prescription.”
When he finally found a doctor who would prescribe the drug, there was a $717 co-pay and he couldn’t afford it. He said he didn’t qualify for assistance because he made $300 too much per year.
“Changes in my healthcare made PrEP impossible for a time,” he said.
Two years later, after he petitioned the drug company, doctors, insurance companies, and his congressman for better access to PrEP, he found and enrolled in a study that provided the drug to patients for free.
“I don’t think my challenge is over yet; I merely won a battle,” Hadash wrote in an email to VICE News. “The study will stop providing Truvada sometime next year and I will have to start over. My hope is that there will be better avenues established by the government, insurance companies, and Gilead by then.”