My PrEP Plea!

It is exciting that we are on the brink of a new era – the advent of pre-exposure prophylaxis (PrEP) to reduce the risk of getting HIV. At the moment, PrEP is on the uptake in certain communities, and there are many efforts to make it widely available. But I have a concern.

Youth under the age of 18 need parental consent/consent of legal guardian to access PrEP in New York State. This is problematic and presents a barrier. Youth under the age of 18 may be the ones MOST at risk and that could benefit most from PrEP in their toolbox for making informed sexual and reproductive health (SRH) choices for themselves, as they may have limited to no access to relationships with adult guardians for a variety of complicated and often traumatic reasons.

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What PrEP means for me?

I remember how much I had to adjust myself in order to succeed in a tough city such as New York when I came to the US three years ago. It wasn’t easy. But after so much hard work, sacrifices, and sadness over being so far away from my family and people I love, I must say that it was really worth it!!!

I have always believed that everything happens for a reason. I spent five years studying very hard to get my Bachelor Degree in Human Resources and then four years working in the field; both in my home country Venezuela. The first months I spent in New York, I was constantly fighting a lack of motivation because I felt I was never going to get a job in my field.
A year and a half later, I got the wonderful opportunity to start working at the Latino Commission on AIDS in the Research and Evaluation department. I must confess that I was so scared because this was a brand new thing for me. I never imagined using statistical analysis software, interpreting data, or networking with important people in the health field and also learning so much about behavioral interventions, capacity-building assistance, advocacy, and HIV testing.

Last year, I heard the word “PrEP” and terms such as “are you PrEPared?” and “#TruvadaWhore” for the first time.   As a person working in the health field, specifically data and research, I had to learn about all of this in order to be updated in my new field. But I didn’t consider the chance of using PrEP myself, because I was scared of possible side effects and also giving a bad impression to the people I would potentially date.
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State of the Science Round Up

State of teh Science Heading

April 29, 2014

Welcome again to our new Blog Series that brings you state of the science and health equity findings, as well as community reactions to scientific breakthroughs.  Keep us posted of what you are reading and we will do the same!

This week we have a special focus on the HIV Prevention Pill or PrEP (Pre-exposure Prophalaxis). This is a relatively new HIV prevention tool where people who are at high risk of becoming infected can take a daily medication to lower the chance that they will get infected. This has been approved by the US Food and Drug Administration (in 2012) and the Centers for Disease Control and Prevention has published guidance on prescribing PrEP; while research has shown evidence of its effectiveness, is still a lot to understand in terms of how people use the pill, access, adherence and stigmatization (which was highlighted in our blog last week). Here are some new findings on these issues from the Conference on Retroviruses and Opportunistic Infections (CROI) held this past March, as well as a journal article recently released in the Lancet.

HEARD LogoImplementation of PrEP in STD Clinics and a Community Health Center: High Uptake and Drug Levels among MSM in the Demo Project

Starting with PrEP “uptake”, which these researchers define by looking at how many people agree to be in the PrEP study out of how many people were eligible. For instance, if 100 people were screened and were eligible for the study, and 50 agreed to be in the study, the “uptake” would be 50%.  A few interesting points they have in their tables are that there was a much higher uptake among 1) those self-referred vs. clinic-referred (makes sense); 2) older folks; 3) those with higher risk (also makes sense); and 4) those who already knew about PrEP.

HEARD LogoUptake of PrEP for HIV slow among MSM

“Uptake” in this report is not defined in the same way as in the above study. In fact it is not defined at all. It’s a bit more general. This report discusses challenges, concerns and areas for additional study around barriers for Men who have Sex with Men (MSM) in the US to utilize PrEP as a tool for HIV prevention. The key issues discussed are around communication and messaging, dosage and risk behavior.  A couple of the points that resonated most with me are:

  • 1) the difficulty in communicating with one’s family doctor around sexual experiences and
  • 2) the need to collect more information about dosing – meaning how effective is PrEP if you take it less than once a day?
  • While there is some data on this already, this remains a primary concern that we hear among service providers and needs to be examined further.

    From the article: “Kenneth Mayer, professor of Medicine at Harvard University and the medical research director at Fenway Health, a community centre in Boston, MA, USA, believes that as with other innovations, uptake of PrEP will be slow until knowledge of past and ongoing trials become widely known in both the MSM community and the general population. Mayer also points out that there are many more MSM actually using PrEP, but currently this is within clinical trials. Thus prescriptions could rise substantially once the current crop of clinical studies in the USA comes to an end.”

    HEARD LogoEarly Adopters: Socio-demographic and Behavioral Correlates of Chemprophylaxis Use in a Recent National Online Sample of Men who have Sex with Men in the U.S.

    In line with the previous article, researchers found that only 1.2% of over 9,000 MSM who completed the survey reported using PrEP in the past. The survey took place in August 2013 and participants were recruited from an online sex-seeking network site. The majority of the respondents identified as white (85.7%), with 7.5% identifying as Latino and 3.9% identifying as Black. Although these percentages are low, the sample size is high – thus it would be interesting for the authors to do specific sub-population analyses and see how PrEP use and access is different within Black and Latino MSM communities.

    From the source: “Although MSM in this online survey reported significant HIV risks, their experience with PEP and PrEP was limited. In order to increase PrEP uptake among MSM, PCPs need to be educated to provide culturally competent care, so that patients will be comfortable discussing HIV risks that could be decreased by PEP or PrEP.”

    HEARD LogoWillingness to Use Pre-Exposure Prophylaxis among Community-Recruited Injection Drug Users

    Injection with equipment that has HIV is the most “efficient” way to contract the virus. Meaning, one is at the highest risk of contracting the virus by sharing injecting equipment such as needles, cotton, and water (compared to contracting HIV through sex). Although the rate of HIV among people who inject has dropped dramatically, PrEP may be another tool to help “get to zero,” the slogan representing the global goal of “Zero new HIV infections. Zero discrimination. Zero AIDS-related deaths.” One of the main concerns for this, however, is that one gets the medication through a doctor, and that many people who inject may not have access to a doctor or insurance.  This study interviewed over 300 HIV-negative injection drug users and found two interesting points:

  • 1) About 70% said they were somewhat or very likely to use PrEP if it was free.
  • 2) About 88% said that they would still need to sterilize/clean needles or use condoms during sex if they were taking PrEP.
  • This second point addresses a major concern some people have – that if a person has this prevention pill, then that person wouldn’t use any other protection.  Based on the above article, it doesn’t appear that this should be a primary concern; however, there is plenty of forthcoming research that is looking at this very concern.

    From the source: “A large proportion of active IDUs in Washington, DC reported being willing to use PrEP if it were available at no cost. IDUs who were younger and had more sex partners reported to be more willing to use PrEP, suggesting that these groups could be targeted first to explore the practicality of PrEP use in this population. Further research should be done to explore availability, uptake, and adherence of PrEP among IDUs.”

    Written By: Emily Klukas
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    And then there were a hundred!!!

    We have posted our 100th blog article and we want to take a moment to thank all of our followers! The Institute for Hispanic Health Equity has been blogging for the past year with the intention of raising awareness and discussion on bridging the gap in health disparities throughout the United States and Puerto Rico. A big thank you to all our readers and followers for helping us spread the word!

    In case you missed them, here are the top ten most popular articles as of today:

    Please scroll bellow and take a look at what our followers are saying too…

    Engaging the Community in Times of Change and Progress

    In 2010, the United States for the first time put forward a National HIV and AIDS Strategy (NHAS) to address the impact of HIV and AIDS in the country. With three specific goals: reducing HIV incidence, increasing access to care and optimizing health outcomes, and reducing HIV-related health disparities; the strategy’s desired impact is to reach a time in which transmission is rare, and if to occur, medical care is of high quality. Medical care, on the other hand, will be greatly influenced by the Affordable Care Act (ACA), a law intended to ensure that everybody in the United States has access to affordable health insurance (passed in 2010, uphold by Supreme Court in 2012). These past few years have indeed been a period of CHANGE.

    Naturally, the HIV and AIDS service provision is experiencing this change. Some AIDS Service Organizations and Community Based Organizations are going through a transformation to ensure that programs and services are aligning with the National HIV/AIDS Strategy, also taking into consideration the expected implementation of the Affordable Care Act. This is one way that organizations are sustainable. However, while agencies are adapting to the changing landscape, it is important not to neglect the community; their needs and participation in the process. It may not be the intent, but it is sometimes the result of having to adapt in an effective yet hurried way.

    Truvada Pills

    It’s one thing to have the tools, it’s another to use them right.

    The changing landscape of the HIV/AIDS prevention field has renewed the hopes of many communities around the world as significant milestones and advances have been made in recent years. An example worth noting is the 2012 Food and Drug Administration (FDA) approval of Truvada, for pre-exposure prophylaxis (PrEP), a tool for reducing the risk of sexually acquired HIV infection in HIV negative men and women.  This approval reassured the global health community that we are moving in the right direction. In addition, a clinical trial to determine the effectiveness of two treatment strategies in preventing the sexual transmission of the virus in HIV-serodiscordant couples, known as HPTN 052, found HIV treatment to be effective in reducing HIV transmission by 96%[1]. Although, PrEP is the first of its kind in the area of prevention with those at high risk, there are currently additional clinical trials being conducted in search of additional preventive methods such as vaccines and microbicides (visit and This is what is called Biomedical HIV Prevention Research.

    BTGBSince the approval of Truvada as a PrEP strategy and the implementation guidelines set forth by the Centers for Disease Control and Prevention (CDC), it seems that there are more questions than answers on behalf of both the service provision workforce as well as the community at large. Having questions is indeed crucial; they lead to rich discussions where we gain knowledge and understanding.  Town Halls provide an ideal platform to engage both audiences – providers and community – in this kind of discussions. This is one of the goals of the Be The Generation Bridge (BTGB) and many of its national and local partners throughout the US that work collaboratively to foster awareness of and support for HIV prevention research. The Latino Commission on AIDS and its network Juntos Construyendo are one of the partners.

    JuntosWith the project, Juntos Consturyendo (Building Together) an AIDS-free Generation, the Juntos Construyendo Network and the Capacity Building Assistance Division set out to conduct Town Halls in 6 different cities: San Juan,PR,  New York City, Philadelphia, Chapel Hill, NC, Dallas, and Ft. Lauderdale, FL. Although Town Halls seem to be a straight forward concept; location, audience, medium and technology suggested the need to innovate, adapt, and tailor each Town Hall to effectively reach the local audience.

    As of May, four town halls have been implemented, and all have had a different format; some even included the use of multimedia and social media, while others were less technological and more conversational and workshop-oriented. Feedback and immediate outcomes from the community were varied: from getting HIV tested on site (ideal when addressing myths and facts about HIV with an elder Latino population); to discussing messages for the heterosexual community who is also at risk (prevention messages are too “gay focused” community members said); and to understanding how to craft your “Know PrEP” messages using social marketing through social media ¡en Español!

    Town HallThe CHANGE Model (Vega, 2010) served as framework principles to the implementation of these town halls. Below are some suggestions to consider if thinking about implementing one in your community:

    1. Have a concrete goal and purpose for the Town Hall.
    2. Know who your audience is – Customize: The term “Community members” can be segmented into many sub-groups and through that segmentation you can assess best approaches to presenting the idea, issues, topic, etc. to your constituency. It may be that you end up implementing a twitter Town Hall.
    3. Have a good moderator: Expert moderators would be able to use time effectively, are able to engage the audience, and facilitate a conversation between panelist and audience.
    4. Get support from experts on the subject you are presenting. Depending on the purpose of Town Hall, sometimes having presenters with different perspective on the subject could be beneficial. Different perspective does not mean opposing or contradictory ones – it’s not a debate. An example in the case of HIV Biomedical Prevention Research was to have a combination of panelists that included service providers, community members, and researchers.
    5. Create partnerships (Networking): The changing landscape in the HIV field emphasizes collaborations. Agencies can work together in bringing information to the communities they serve.  As we move into the ACA-world, an up-and-coming need will be informing the community about “shopping” for their own insurance which may involve partnering with another agency.
    6. Lastly, process evaluation can be used to assess weather you reach the desired amount of people, type of people, topics covered, etc.

    Town Halls have been and continue to be an effective way to engage the community with the work we currently do or plan to do. These gatherings serve as a time to meet and network, gather feedback, increase knowledge and awareness, and possibly have an impact on beliefs and attitudes our constituency has on a particular topic. It is a platform of communication that allows us to listen to the community’s concerns, as well as ideas that can benefit the work we do.

    Written by: Bolivar X. Nieto


    [1] Cohen MS, McCauley M, Gamble TR. HIV treatment as prevention and HPTN 052. Curr Opin HIV AIDS. 2012, 7: 99-105 PMCID: 3486734.