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HIV drug works, but convincing people to use it is a hard sell

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Chaz Saxon
Chaz Saxon photographed Saturday, Sept. 6, 2014 near his home in Minneapolis. He is taking the first approved drug to prevent the spread of HIV.
Jennifer Simonson / MPR News

Chaz Saxon knew he was gambling with his health when he repeatedly engaged in unprotected sex with multiple male partners throughout the last 20 years.

Saxon, of Minneapolis, worked as a prostitute with a male clientele in his early 20s and has lost close friends to AIDS-related complications. That scared him. But it didn't make him any more willing to use condoms. "I had the mentality thinking of you know, 'If I get it, I get it. If I don't, I don't,'" he said.

When Saxon, 41, heard there was a pill that was highly effective at preventing HIV transmission, he was more willing to try that approach. But gay men and others who have unprotected sex have been slow to ask for the drug.  HIV prevention advocates say some people simply don't know about the drug or can't afford it, while others are embarrassed to ask for a preventive medication that acknowledges their risky behaviors.    

The prevention strategy is pre-exposure prophylaxis, often referred to as PrEP. It focuses on treating high-risk, healthy patients with an antiviral medication so they're less likely to contract HIV if they're exposed to the virus.

Truvada, an HIV drug that has been around for a decade, is currently the only medication approved for use in people who are trying to prevent HIV infections. 

"With me being promiscuous and a gay male, this is a step for me to protect myself from HIV," said Saxon, who has been taking Truvada for a year-and-a-half. 

He convinced a couple of his gay friends to also go on the drug. 

But HIV prevention advocates say selling people on the drug has been a challenge. Nearly two years after the FDA approved Truvada for HIV prevention, it appears that very few men like Saxon are taking it. There has been a modest decrease nationally in new HIV infections over the past few years. But the decline has not occurred among men who have sex with men. 

"We've seen just around 40 patients that are being actively followed, which is a disappointing[ly], but not surprisingly, small number," said Dr. Keith Henry, an HIV specialist at Hennepin County Medical Center. "And this has been true around the country."

For Henry, the numbers are disappointing because even though HIV infections are down from their peak in Minnesota, there are still around 250 new cases every year.

If more patients used Truvada that number could drop sharply, said Henry, who opened the first PrEP clinic in the state in the fall of 2012. But HIV treatments have been so successful, that it's hard to convince people that they need to prevent the disease, he said.

"HIV is not the fearsome entity that it once was, HIV and AIDS," Henry said. "If this had been available in the '80s and '90s, interest would be much higher because people were panicked." 

  A few blocks away from Henry's clinic, Minnesota's largest STD testing center is also trying to recruit its high-risk clients to take Truvada. 

Red Door Services at the Hennepin County Public Health Clinic has about 100 patients on the drug regimen, so far.

"HIV is not the fearsome entity that it once was, HIV and AIDS. If this had been available in the '80s and '90s, interest would be much higher because people were panicked."

Community health specialist Javier Bucher wishes that number was much higher. But Bucher thinks the interest may be growing, given that he has fielded a lot more questions about the medication in just the past few months.

"People want to know about side effects," Bucher said. "People want to know about cost."

Taking a pill to prevent HIV is a big commitment. Ideally, the medication should be taken every day at roughly the same time. When that regimen is followed, the drug is more than 90 percent effective. 

There can be side effects, including gastrointestinal discomfort and the possibility of liver damage. 

The drug also can be expensive. Insurance doesn't always cover it, and that can add up to thousands of dollars in out-of-pocket costs for some patients.

Then, there's the moral debate. 

Saxon said some people in the gay community have been critical of the drug because they're worried it will damage the public's opinion of them.

"They're thinking, 'great, you know the gay community has a reputation of being promiscuous anyway, and now with this advancement with the Truvada and the PrEP program, it's just going to fuel fire to that,'" he said.

But Saxon said taking Truvada has not made him any more promiscuous than he already was. He's also aware that it doesn't protect him from contracting other STDs. 

If anything, Saxon said, he's proud to be among the early adopters taking the drug.

"At least people are being educated and being smart about it and protecting themselves," he said. "They're doing something as opposed to nothing."

HIV prevention advocates say Truvada is their best shot at reducing HIV transmissions among a population of men and women who have been unable or unwilling to change their behavior.

The ultimate tool would be an HIV vaccine. But that's still being developed.