The HIV Prevention Pill: How Is Truvada Taking Root in Black Communities?


This summer, the Food and Drug Administration approved Truvada—long used as a life-saving drug for people living with HIV – for use among adults with a negative status who are at high risk for contracting the virus.

The science and public health communities have heralded the drug’s use as a pre-exposure prophylaxis (or PrEP) as a potential godsend for certain groups, particularly young black men who have sex with men (MSM), who are experiencing a rise in HIV infections. Between 2006 and 2009, new HIV infections increased by nearly 50 percent among black MSM between the ages of 13 and 29.

But in the months since the FDA’s approval, some who work on prevention efforts in Black and low-income communities have urged PrEP proponents to pump their brakes.  Interviews with advocates, service providers, policy experts, HIV testers, and people living with the virus reveal a range of perspectives. Some committed to fighting the spread of HIV are excited about the pill’s new availability as a prevention tool. Others worry about how it’s being rolled out in communities where distrust of medical systems runs high. There’s also a concern that the pill will be seen as a silver bullet that makes condoms and other safer sex practices unnecessary.

For Jeffrey King, a service provider and founder of In the Meantime Men’s Group in Los Angeles, the public health community’s cheerleading of PrEP was initially off-putting. The new approach felt like yet another wave in the sea of biomedical approaches to prevention.

“How can we participate in helping our community catch up with the science?” said King, who’s been testing and educating black MSM in South Los Angeles for more than a dozen years. “We’ve got the one-minute test now, we have the home test, we have PEP (post-exposure prophylaxis) and PrEP and all this stuff that’s rolling out of CDC around prevention strategies. But we have a community that is under-informed and undereducated.”

He’s since warmed to the idea and is talking with his clients about PrEP as one of many ways to stop new HIV infections. But King said service providers have a hard time doing their jobs as educators when they haven’t been able to weigh in on new tools early in the process.

“The overarching concern is that we are not always positioned at the table as black people at the beginning of this,” he said. “The consumer is often not sitting in the room to add the consumer perspective.”

Rollout

For now, few HIV-negative people are using Truvada as a way to stave off the virus. There are multiple demonstration projects up and running, and PrEP is being prescribed to some whose partners have a positive status, mostly within gay male couples. But as the drug is rolled out more broadly, someone considering PrEP is sure to have a number of questions.

This week, Isaiah Webster III, a prevention manager with the National Alliance of State and Territorial AIDS Directors (NASTAD), got to hear some of the most pressing questions from members of the Young Black Gay Men’s Leadership Initiative, a group that generates ideas and solutions for addressing the HIV/AIDS epidemic within their community.

They want to see racially diverse participation in these demonstration projects and studies, Webster said. The young men also want to know more about the feasibility of the drug’s use given that it needs to be taken daily.

“We don’t have very good data to say what happens when you’re not adherent to that level,” Webster said.

Will people really take this every day?

This question around the average person’s ability to stick to a one-a-day regimen is top of mind for Maria Mejia, a Colombian activist and peer educator living in Miami. Mejia contracted the virus at age 16, more than 20 years ago, and is an HIV tester at Jackson Memorial Hospital.

She says she sometimes works with people there who test positive and then have a hard time finding drugs that will adequately treat the virus.

“Nothing works for them,” Mejia said. “And that’s because the person who was positive [who infected them] was not adherent. They tried one medication, the side effects were too strong, they tried another one.”

The issue of drug resistance as it relates to PrEP is complex. There’s not much evidence that an HIV-negative person who takes it sporadically due to side effects or for other reasons would develop a resistance to the drug and thus become unable to take it as treatment should he eventually contract the virus. But someone who’s unaware that he’s already HIV positive when he starts taking the drug as a preventive measure does run the risk of contributing to development of a strain of the virus that won’t respond to Truvada. 

Inez Chambers, a 29-year-old woman in Miami who has been HIV positive for a decade, also has concerns about side effects. She thinks the drug will be a tough sell once someone with a negative status understands what his or her body will go through while on PrEP.

“I’m on a regimen that has the Truvada in it,” she said. “The stuff is nothing to play with.”

Over the years, the drugs she has taken have caused neuropathy (nerve damage) and constant fatigue. Chambers also worries that once Truvada becomes more widely prescribed, it could be presented as an option in a narrow and de-contextualized way.

“I’d be a bit more for making it available to people if there was a huge push for real, in-depth comprehensive sex education,” said Chambers, who has worked in Arkansas as an advocate for people living with HIV. “But without that, it scares the crap out of me.”

In the absence of that broader conversation, Chambers predicts that two distinct camps will emerge in the high-risk populations PrEP is meant to reach: Those she describes as quick-fix seekers who will take the drug without using other forms of protection, and those with historically-rooted fears of the medical establishment. In this second camp, references to the Tuskegee experiments are commonplace.

“In our community, there’s a load of us who still don’t go to the doctor,” said Chambers, who describes herself as of African American, Native American, and Irish descent. “There’s still that distrust there.”

Next steps

The desire to confront these community norms drives NASTAD’s Webster, who works with the HIV and AIDS directors of state health departments, to speak to groups who work on the front lines of HIV prevention.

“We want to make sure we don’t have all of this misinformation taking root,” he said.

Webster added that many states are in the early stages of putting together their plans for how to educate medical providers and community-based organizations about PrEP. In 2013, these health departments will be developing educational campaigns for their states.

Other efforts are underway to get more data on how and whether PrEP can have a broader application with women. So far, it’s largely been discussed as a tool that will be good for MSM and sero-discordant couples. But in 2009, nearly a quarter of new HIV infections in the US were among women. Black women made up more than half of these new infections.

A national working group is implementing a survey targeted high-risk populations, including sex workers, intravenous drug users and trans women, to gauge their knowledge of and attitudes about PrEP, said Naina Khanna, Policy Director at Women Organized to Respond to Life-threatening Diseases (WORLD).

Khanna said PrEP could be groundbreaking as an HIV prevention tool that women can control, but that right now it’s unclear given the lack of studies on that particular community.

“We don’t know how well they’re going to work,” she said of the drug. “We don’t know what the long-term effects are.”

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  • irisheddieohara

    As one who eschews any type of chemical recommendation from doctors in favor of natural and herbal remedies which are easier on the body, I hope the HIV positive people in America don’t look to this drug as a cure all.  I fear that they will find that the side effects are horrendous and may be life threatening.  This seems to be the case with all the drugs that are constantly pushed, pushed, pushed on TV.  As I listen to the long list of side effects, some of them quite nasty, I find myself asking “WHY in the world would I want to put that crap in my body in the first place?”

     

    I don’t trust Big Pharma as far as I can throw them.

  • jennifer-starr

    Sure, because HIV will totally be treated by prayer and a bunch of junk from your local health food store or some infomercial quack……….*snort*

  • irisheddieohara

    What is with you libs anyway?  You are without a doubt the most angry people I have ever seen!

     

    My point was that there must be more natural and safe holistic remedies to take than to fill your body full of chemicals from Big Pharma, letting them make a killing while they kill you.  I have Hep C and have been successfully holding it at bay for the last 10 years with a combination of diet changes and herbal medications.

     

    And then you have to turn it into a vendetta against religious practice. I didn’t even mention religion, did I?

     

    You really need therapy.

  • crowepps

    But trolls LIKE anger — trolls LIKE eliciting an emotional reaction from other people on a site by disrespecting and denegrating the other posters, by being deliberately obtuse and pretending they aren’t getting the point.

    Surely you find it very satisfying to come to this site and spout a bunch of unscientific nonsense, insist that everybody has to act Catholic, spew misogynist talking points, and get everybody upset.  There certainly can’t be any other point to your posts, since you haven’t actually come up with anything original or interesting.

    Nevertheless, please, please cut and paste a few more – my Cupcake Bingo card isn’t yet complete.  Still missing rape apology and anti-semitism.  Oop, my bad, “Jewish banking practices”!  Now, just one more –

  • jennifer-starr

    Anger? Not really. A certain amount of snark, perhaps, but I don’t believe I’ve shown actual anger in my responses towards you.  But accusing others of anger seems to be your stock response to others on this board, so I suppose I was next in line.  And thinking that faith healing is a scam and that alternative medicine is rife with quackery and snake-oil salesmen  is hardly a vendetta. 

     

     

  • rebellious-grrl

    Wow, that’s a sweeping generalization. One can be angry about something and not be a “angry person.” I’m angry about a lot of things, but I’m not a angry person. 

     

    You have mentioned religion in your previous posts so get over it. 

  • colleen

    You confuse anger with disgust and contempt and,most of all, boredom. You are neither intelligent or sentient enough to be a worthy opponent.You’re just another  right wing  idiot who enjoys denigrating women she/he does not know and who do not want to know him/her in public forums. In another era you would be making obscene phone calls. 

  • irisheddieohara

    The retort of a small mind unable to defend itself.

     

    No, I’m not here looking to make people angry.  My hope is that perhaps you will stop and think about statements you make that have no basis in reality, such as “it’s not a baby, it’s a clump of cells.”

     

    Really?  That clump of cells just happens to look very much like a baby when it is killed.  Or do you just blow off the pictures we pro-lifers hold up at all the clinics.

    Or maybe you would like to anwer my natural law argument against so-called  gay “marriage.” which can be found here:

     

    http://www.rhrealitycheck.org/article/2012/11/29/potential-scotus-review-doma-presents-potential-pivotal-moment-gay-rights-in-amer#comment-75231

     

    Come on — admit it.  You love “trolls.”  Who else would give you an opportunity to seethe with righteous anger as you indulge in another round of name calling.

     

    However, kudos to your site.  I’ve actually lasted here a week without being banned.  That sets some kind of record for Liberals — those tolerant people who ban everyone who doesn’t show up spouting off the party line.  Can’t tell you how many times Common Dreams has banned me under different names.   So much for discussion and tolerance over there.

  • goatini

    Troll is called out on his BS;

    Troll shifts into Projection 101;

    Troll accuses innocent parties of his own anger.

    It didn’t work for Rove, Limbaugh, or any of the GOTP RW watercarriers this past election, and it’s definitely not working for you now.  

  • crowepps

    Not a lot of banning done here, since we’re hoping you might be educable.

    Unlikely on present evidence, since all you’ve done is post the usual myths and prejudices apparently contained in the Catholic ‘talking points’ pamphlet, but still possible!

  • colleen

    The retort of a small mind unable to defend itself.

     

    The fact that you don’t acknowledge that your  posts are deliberately insulting does not mean we’re unaware of that fact.

    Come on — admit it.  You love “trolls.”

    Like I said, you are not perceptive or very intelligent.

     

     

  • irisheddieohara

    What I share comes from being around for 63 years.  It comes from living a wild as hell life as a young man and believing everything that you believe now,  right down to telling my lover to get an abortion when she showed up pregnant one say.  I am sure that the son she bore is thankful that she did not heed that advice.

     

    Burned out at 22, I found that this life of “freedom” to do whatever I wanted to do was really a trap.  There was no real happiness in it, there was no real pleasure, and between the drug overdoses, the veneral diseases, and too many hangovers from wild parties, I was at the end of my rope.  I am alive today because my life was turned around by the gift of faith in God  And as I examined that faith,  I found that it is reasonable, makes utter sense, and is a source of peace and joy.

     

    Angry?  Yes, I do get angry when I see pictures of poor, innocent children cut to shreds, who’s only crime was to be conceived by two people who did want them.   That makes me every bit as angry as George Bush’s phoney war built on lies, as dead Iraqi children who did not deserve one of Bush’s 1,000 killer bombs to be dropped on their heads.  It makes me as angry as reading about genital mutilation of poor girls in the Sudan and the stealing of retirement funds by lying banksters who collaborated with Wall Street thieves to rip off the system and impoverish thousands of people.

     

    Angry?  Yes, there is a lot in the world worth being angry about.  But I try not to take my anger out on others, even those with whom I greatly disagree.   This is a good place for me to learn such patience and charity, especially when all I can expect is a raft of personal insults.  But I hope that perhaps there are one or two people here who might wish to talk rather than shout and debate and reason over these issues.

     

    I’ve been down life’s path for a long time.  My reasons for believing as I do come from a lifetime of experience, study, learning, and reasoning things out.  I am sympathetic to women who have problem pregnancies, and believe that everything possible should be done to help them.  But I do not believe that killing an innocent child is the proper answer.  We can do better than that.

  • irisheddieohara

    I am educable.  When Bush declared his phoney war,  I was still in the throes of Conservative mindset that declared that all Bush did was holy and righteous.  But after a long period of reading other sources than right wing propaganda, and listening to other people than Rush Blowhard,  I have come to understand that Bush lied through his teeth in order to make money for his rich military/industrial fat cat cronies.

     

    I am educable.  But not when it comes to killing children.  You don’t educate a person out of that, no matter how much sophistry you use in your arguments.

  • colleen

    Do you think you could ‘share’ someplace else?

  • colleen

     I was still in the throes of Conservative mindset

    Oh, I see. And now you freed yourself from those chains?

  • crowepps

    And I can certainly see why!

  • crowepps

    And yet you apparently have no problem whatsoever letting women die.

    It’s really interesting how men who were promiscuous rip roarers when they were young, who felt free to use up women as sex toys and demand their own progeny be aborted, so consistently ‘get religion’ when they’re old and insist that’s all wrong, and that instead women should only be used up as reproductive breeding stock.  Your ‘story’ could have been lifted wholesale from a biography of St. Augustine, complete with the aged intolerance, homophobia, loathing of sex and contempt for women.

    Funny how as women get older, they tend to become more understanding and compassionate, and as men tip over into senescence they become obsessed with ensuring no one else has a chance to imitate the way they personally lived – seems like everything changes except the misogyny.

  • irisheddieohara

    And yet you apparently have no problem whatsoever letting women die.”


    Why do you say this?  If you have read any of my postings here, which are not all that great,  you must have seen that I said that in a crisis health situation where the woman is pregnant, the FIRST CONCERN is the health of the woman.  That means that all efforts are made to stop whatever is killing her and bring a cure to the situation.  If the treatment has the unwanted effect of ending the baby’s life, this is very sad, but the woman’s life must have priority.   


    And that is Catholic teaching, in case you don’t know it.

  • irisheddieohara

    No one taught me from very young that women were not to be used as sex toys.  What did the society of the ’60′s teach us young men.  

    “Oh yeah.  Women want it all the time.  They are just horny all the time.   Life is fun.  Sex is fun.  Get as much as you can.”  And on and on and on and on…..”

     

    Now the chickens have come home to roost in this country and you complain when someone wakes up and says  “Oh man.  That was so wrong.”  and then tries to change what he sees as a rotten system that abuses women.

     

    You know, you Liberals are strange.  No matter what we do,  you will find something wrong with it so you can whine and complain.  No suggestion is ever good enough for you, no change of heart ever satisifies you.  You enjoy being unhappy.

     

    And BTW — my change of heart took place when I was 21 and had an immense religous conversion experience.  It did not take place in my old age.

    FWIW.

  • beenthere72

     I am sure that the son she bore is thankful that she did not heed that advice.

     

    You don’t know?  You say that as if you don’t know your son at all.   If so, it sounds to me like your amends for living a ‘wild as hell life’ need to begin at home.

     

    By the way…

     

    right down to telling my lover to get an abortion

     

    … did not make you pro-choice back then.   That was an attempt to be coercive.  We are not OK with that.

     

    I try not to take my anger out on others

     

    No, you just shove your beliefs down other peoples’ throats.

     

    come from a lifetime of experience, study, learning, and reasoning things out

     

    You know what you’ll never experience?   *PREGNANCY*  

     

    I don’t understand.   Do you assume we do not have this mighty wisdom that you seem to think you possess because you’ve got a few years on some of us and spent much of it with your nose in a bible?   Because you had a few hangovers, OD’s and VD’s early on in life?  (as someone in recovery myself, I find this story rather suspect).      You skipped anything resembling reasonable and reasoning and went from one extreme to the other.    To assume you know better than little ol’ us is arrogant, presumptuous and self-righteous.

  • beenthere72

    Now the chickens have come home to roost in this country and you complain when someone wakes up and says  “Oh man.  That was so wrong.”  and then tries to change what he sees as a rotten system that abuses women.

     

    WTH are you talking about?  

  • crowepps

    If the first concern is the health of the woman, then abortion should always be the preferred choice, because it is never better to be pregnant than it is to be not pregnant.  The state of being pregnant puts the woman’s health and life at risk, and any woman who chooses to get an abortion is improving her health.  Now women who choose to take the risk of ruining their health by remaining pregnant because they want children are doing what they want to do, but the idea that any woman should be forced to continue a risk to her health is outrageous. 

  • jennifer-starr

    You can’t blame the ’60s. My dad is your age and didn’t do any of the wild things you did.  And before you ask, yes, he is a liberal. 

  • jennifer-starr

    What I share comes from being around for 63 years.  It comes from living a wild as hell life as a young man and believing everything that you believe now,  right down to telling my lover to get an abortion when she showed up pregnant one say.  I am sure that the son she bore is thankful that she did not heed that advice.

    No, you do not believe everything I believe now.–ordering someone to get an abortion is not pro-choice–it’s anti-choice, which apparently still describes you. 

    Burned out at 22, I found that this life of “freedom” to do whatever I wanted to do was really a trap.  There was no real happiness in it, there was no real pleasure, and between the drug overdoses, the veneral diseases, and too many hangovers from wild parties, I was at the end of my rope.  I am alive today because my life was turned around by the gift of faith in God  And as I examined that faith,  I found that it is reasonable, makes utter sense, and is a source of peace and joy.

    Yes, because clearly there are only two choices in life–party animal or religious fundamentalism. Granted, I like to lead a quiet life–probably a bit too quiet for most people’s tastes–but even I know there’s such a thing as a happy medium. And so the extreme partier becomes the extreme zealot–not much change there–you’ve merely taken your extremism and pointed it in a different direction.