'I'm passionate about helping': Up close with an HIV vaccine trial participant

One South African woman explains why she volunteered for a vaccine being tested by HVTN
Likhapha Monica Faku, HIV vaccine trial participant
For Likhapha Monica Faku, HIV vaccine trial participant, the fight to find a vaccine that will stop HIV is personal. By Robert Hood / Fred Hutch News Service

CAPE TOWN, SOUTH AFRICA -- For Likhapha Monica Faku, the fight to find a vaccine that will stop HIV is personal.

As a young woman living in a country with the highest rate of HIV infection in the world, she has felt AIDS’ toll first hand, losing an uncle and a close friend. She’s devoted to helping educate others, working in local high schools and talking to teens about HIV, pregnancy and other health issues.

She’s also fighting HIV another way – as a participant in a recent trial of an HIV vaccine being tested by Fred Hutch’s HIV Vaccine Trial Network (HVTN).

Developing an effective HIV vaccine in South Africa requires recruiting thousands of participants who don’t have the disease but care enough to get involved, and who are willing to assume a certain amount of risk - including the possibility that the vaccine could actually increase the likelihood of contracting HIV.

Who would do that – and why?

Faku, 24, said for her, beyond her personal losses, her main reason for signing up was having greater credibility when talking with people in her community about the HVTN.

As a member of the community advisory board for the HVTN’s site in Klerksdorp, located in the province of North West, she said participating in the trial makes her better equipped to educate others about the importance of developing a vaccine.

“I work with the community, and it’s better if I join the study so I can go talk to them about something I know,” she said.

‘I have lost so many of my family’

Sandra Ntshangase, a recruiter at the HVTN’s site in Soweto, South Africa, knocks on doors in surrounding areas to solicit participants, providing some initial information about the trials and inviting people to come to a presentation to learn more.

After correcting any misconceptions or rumors about the vaccine network, she said it’s typically not difficult to recruit participants. For many of them, HIV is an acutely personal issue.

“When we ask them, ‘Why did you come and participate?’ they will tell you, ‘I have lost so many of my family through HIV. I think by participating, maybe I will play a role of getting this vaccine that can prevent HIV.’”

Ntshangase said some people are suspicious about the HVTN, since its Soweto site is in the Chris Hani Baragwanath Hospital, which offers HIV treatment and counseling. Some think that by participating in the trials, they may become infected with HIV.

Another challenge is the stigma that persists around the disease, she said, particularly among older people.
“Some people think that maybe eating on the same plate, they will get it,” she said.

Faku said while her family and boyfriend initially didn’t understand why she was participating in the trial - her boyfriend wondered if that meant she had HIV - they’ve come around.

“I always tell my boyfriend he needs to protect himself and I’ve got to protect myself as well,” she said.

The difficult quest for a vaccine

The effort to find an HIV vaccine had a major setback in 2007, when a U.S. vaccine trial known as the Step study was halted after it was discovered that some participants who received the vaccine may have had a higher risk of HIV infection. As soon as the findings were known, a similar HVTN trial using the same investigational vaccine in South Africa, named the Phambili study, was also immediately stopped.

More promising results have come recently. A trial known as RV144 of 16,000 volunteers in Thailand showed that those who got the vaccine had a modest – 31 percent – level of protection against becoming HIV positive compared to those who did not receive the vaccine. The findings were published in 2009.

Being honest and responsive to trial participants has been critical, said Dr. Julie McElrath, who directs Fred Hutch’s Vaccine and Infectious Disease Division and the HVTN’s laboratory arm.

“I think [trial managers] have done a good job of trying to explain to participants what’s happened,” she said. “I don’t think it has impeded recruitment for other studies.”

Faku says that for her part, she’s committed to helping find a solution to stop HIV.

“I’m so passionate about helping to find a prevention for HIV,” she said. “I wanted to be part of a culture that can help to find a vaccine.”

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