[CASE STUDY] The Power of PrEP Advocacy, Achieving Individual and Macro Wins

[We hope this case study inspires us all to take action and demand the healthcare we need and deserve, whether it is access to PrEP or something else.]

Case Study: Getting Truvada as PrEP to those who need and desire it

As part of AIDS Foundation of Chicago's initiative to provide PrEP education and enhance PrEP awareness, it produces a website/blog called My PrEP Experience (right here!) The website provides a host of information and resources for health providers and potential users of PrEP, and catalogues stories submitted by users about their experiences using PrEP.

A university student sent an email to the My PrEP Experience moderators seeking support and advice.He had arrived for his check-up at the student health service center armed with the latest information about PrEP and its appropriate use. As a gay, sexually active man in an urban area with high rates of HIV, he assumed he wouldn’t have a problem getting a prescription because he knew that he was an appropriate candidate for PrEP. However, the primary care physician he saw was under the impression that she could not prescribe it – that the request had to be referred to the university’s infectious disease department.

The doctor told the student she would put a request to the infectious disease (ID) department for an appointment. Later she wrote him an email stating that the ID department will only prescribe PrEP to people in monogamous relationships with HIV-positive partners.

A savvy health customer, the student looked into his insurance coverage and found that it would indeed cover him for PrEP, but his plan restricted him to use his student health service center.

He was stuck....

So, what happens next? Read the rest of this case study for all the details. Spoiler alert - it has a happy ending, and is proof that individual and collective advocacy - community mobilization - gets results.

And please visit the newly revamped PrEPWatch run by AVAC, who, along with other allies across the country, collaborated with us on this specific effort. You will find an an excellent array of informational resources on PrEP, and is must-click.


 

[SLIDES] Nashville Gets PrEPared

Last night in Nashville, advocates came together for "Project PrEPare" - a forum including a group of community health advocates that came together at OutCentral to try and provide answers to the community’s questions about a new HIV prevention strategy called pre-exposure prophylaxis, also known as PrEP.

Below are the slides Mark Hubbard - a fierce and super smart prevention advocate - presented to an audience of more than 50 folks from throughout Tennessee. More info on the event here.

Project PrEPared Nashville - The Road to PrEP from tnmarkyBNA

Helping people get PrEPared at USCA 2014

Health! Hope. Yes Gawd! Finally!

via
Alan McCord, Project Inform
Matthew Rose, PxROAR
Pedro Serrano, Project PrEPare
Jessica Terlikowski, AIDS Foundation of Chicago
Lisa Diane White, SisterLove

These are just a few of the overwhelmingly positive responses we received from folks when we asked them about PrEP at a booth hosted by Project Inform, AIDS Foundation of Chicago, SisterLove, AVAC PxROAR, and Project PrEPare at this year’s United States Conference on AIDS (USCA). More than 1,000 service providers from all 50 states participated this year and we talked to a lot of them!

Over the course of the conference we asked individuals to share their thoughts about PrEP. We asked what is the first thing that comes into your mind when you hear PrEP? What excites you about PrEP? What concerns you about PrEP?

Each of us at the table talks about PrEP on a regular basis. We were ready to dispel myths, explain the science behind the clinical trials, and help people gain a deeper understanding of this powerful new prevention option.

We were blown away by the level of knowledge that folks came to the table with. They knew about PrEP. They understood how it worked. Some came from agencies that have already integrated PrEP education into their standard prevention risk reduction messaging. Others represented agencies that were exploring the possibility of setting up a PrEP clinic. Many raised practical questions about how, would, and could it work in their communities.

We learned that many clinics in smaller cities or in more suburban or rural areas have begun the

These developments contrast quite dramatically from what 2013 USCA participants said about PrEP. Most stated last year that very few providers in their localities were even discussing PrEP as a viable option. Instead what we heard this year is a clamoring for resources, tools, and support for program staff to ensure they have the necessary skills and knowledge to serve their communities. Many remarked that they simply don’t have the resources to train their staff. And we rarely heard anyone comparing, contrasting, or challenging condom use over PrEP use, or vice versa.

We anticipated more resistance than we encountered. Instead, folks raised practical, earnest, and important questions. How will my community make decisions about allocating resources to PrEP when the prevention pie is already so lean? What steps are being taken to ensure transgender people are a part of decisions being made about PrEP programs?

What can we do about access in the South where Medicaid had not been expanded? How can we ensure people who are undocumented can access PrEP when they are ineligible for health care through the Affordable Care Act? In response to these questions, we shared that Gilead has a patient assistance program that is open to people who are not documented citizens, but can provide evidence of their US residence with utility bills or a library card.

Others shared what the new tool meant for them personally:

• 12:00pm every day.

• More protection for my guy.

• PLHIV in sero-different partnerships further empowered to have families they want.

• Magnetic couples (heart)

All of this isn’t to say that every USCAer was fully supportive of PrEP in this early adopter phase of rollout. We did hear from a few people who are uncomfortable with being on the front end of a new intervention, fearing missteps along the way. Some urged that we slow the PrEP train down until more data are known about adherence and side effects in the real world. Others expressed concerns that people will not take it correctly; they will stop condom use or not use them as much; and that we will see a rise in STIs. Yet for the most part these individuals were willing to engage, listen and ask for more information. We also heard from few people who decided that PrEP was not for them due to concerns about their own individual adherence or reluctance to take pills.

In short, the dialogue was honest and open and respectful. Such characteristics are critical to successful implementation of this new intervention. The PrEP tide is turning. People aren’t just lukewarm about PrEP anymore. They are saying with greater frequency, “of course I know” or “of course I’ve heard”. The tide is turning. People are moving past “what are you talking about?” to another level of “let’s figure out how to make this work.” There are robust discussions happening all over the country as people begin to develop and figure out their communities’ response to PrEP. discussions around implementing PrEP services. We heard this from providers in Salt Lake City, Des Moines, Kansas City, Albany, Rochester, San Antonio, and eastern Alabama, and from the states of Michigan, Alaska and Hawaii.

VIDEO:4 Months on PrEP - BareBack Sex, Less Stress, Moving Forward

Day 121: My PrEP Journey

The incredible, passionate, smart and oh so charming prevention advocate Ken Almanza from LA (who we featured on the blog in April ) is back with a new video update talking about his life, sex, relationships, and  being on PrEP.

Four minutes or so - and well worth your time.

Post by Ken Almanza.

UPDATED NUMBER - 116 Leading HIV/AIDS groups (and allied orgs) endorse CDC HIV PrEP Guidelines

[May 20 update: The current list of sign ons has gone up to 116 - and the list below the letter reflects the new number. Organizations - and now individuals as well - are invited to sign on here.]

 

PrEP is a powerful, additional tool in the AIDS response

Thursday, May 15, 2014 — A group of 69 82 116 leading HIV/AIDS and health organizations HIV/AIDS and health organizations and allies today reiterated their strong support for oral pre-exposure prophylaxis (PrEP) as an important HIV prevention strategy for men and women at risk of HIV infection. The diverse group of advocates, researchers and service providers hailed new HIV PrEP guidelines from the US Centers for Disease Control and Prevention (CDC) as a science-driven, public health approach to what remains a major health crisis in the United States.

The guidelines come almost two years after the US Food and Drug Administration (FDA) approved the oral drug Truvada (TDF/FTC) for HIV prevention following an extensive review of data from multiple, multinational clinical trials of PrEP among men and women with different risks for HIV infection. In the time since FDA approval, the CDC has reviewed additional data and sought input from a range of experts and community members to develop these new guidelines.

The guidelines provide critical information to help healthcare providers and patients evaluate the suitability of oral PrEP as an HIV prevention option and ensure that those who choose PrEP have the support – including ongoing monitoring, counseling, adherence support and frequent HIV and STD testing – necessary for PrEP to be effective.

The group strongly condemns the harmful misrepresentations of the facts and anti-scientific approach to PrEP adopted by the AIDS Healthcare Foundation and its president Michael Weinstein. Weinstein continues to make assertions that are not grounded in scientific evidence. We reject statements from all quarters that add to the deep stigma attached to HIV and that erect barriers between people and what they can use to support their health.

Weinstein’s statement that widespread use of PrEP will be accompanied by “a shift to condomless sex” is not based on evidence. In fact, initial studies suggest the opposite, and Weinstein’s assertion underestimates the capacity of informed individuals to make decisions about their health and sex lives. We all must do more to reinvigorate the approach to correct and consistent condom use and underscore that PrEP and condoms are complimentary interventions to the prevention of all STDs, including HIV. But Weinstein's statements fail to recognize that many adults – in the United States and across the world – have not been using condoms consistently or correctly for a host of reasons. PrEP now provides an additional option that also provides significant protection against HIV.

The current scientific evidence clearly indicates that PrEP, when taken daily as directed, can reduce the risk of HIV infection by more than 90 percent. CDC’s PrEP guidelines, like public health guidelines aimed at helping prevent other diseases, outline the support needed to help patients adhere to the daily dosing. The idea of taking a daily pill for prevention is not new: millions of women have successfully taken contraceptive pills to prevent unintended pregnancy, and men and women are able to take a variety of medications to treat or prevent a range of health issues.

The CDC PrEP guidelines underscore that PrEP is not for everyone. Neither CDC nor any of our organizations are advocating for indiscriminate use of PrEP. Neither is anyone suggesting that oral PrEP is a replacement for condoms; rather it is an additional option from which individuals should be able to choose.

PrEP has the potential to help many individuals in the US and around the world protect themselves from HIV. Failure to strategically, effectively and responsibly implement this scientifically sound strategy as part of comprehensive prevention and treatment programs in our fight against HIV would be a true catastrophe. We support the CDC guidelines, and, more importantly, we support the right of informed adults to choose the most appropriate mix of HIV prevention options for their lives as part of truly comprehensive approaches to testing, treatment, care and prevention.

Organizational sign ons: (updated May 20)

30 for 30 Campaign
ACT UP New York
AIDS Action Baltimore
AIDS Action Coalition
AIDS Action Committee
AIDS Alabama
AIDS Alliance for Women, Infants, Children, Youth & Families
AIDS Arms
AIDS Community Research Initiative of America (ACRIA)
AIDS Foundation of Chicago
AIDS Research Consortium of Atlanta
AIDS Resource Center of Wisconsin
AIDS Resource Center Ohio
AIDS Treatment News
AIDS United
American Sexual Health Association
amfAR: The Foundation for AIDS Research
Amida Care
ANAC
Asian & Pacific Islander Wellness Center
ASPIRA Association
Association of Nurses in AIDS Care
AVAC
Bay Area Perinatal AIDS Center (BAPAC)
Between the Lines Newspaper
Black AIDS Institute
BOOM!Health
Cascade AIDS Project
Center for Health & Gender Equity (CHANGE)
Center for HIV Educational Studies and Training (CHEST), Hunter College, CUNY
Chicago Center for HIV Elimination
Chicago House and Social Service Agency
Chicago Women's AIDS Project
Community Access National Network-CANN
Delaware HIV Consortium
East Bay AIDS Center
End AIDS Now!
Equality Michigan
FHI 360
Friends For Life, Memphis
GAT Portugal
Gay City Health Project
Gay Men's Health Crisis (GMHC)
Georgia Equality
Harlem United Community AIDS Center
Harm Reduction Coalition
HealthHIV
Hispanic AIDS Forum
HIV Medicine Association (HIVMA)
HIV Prevention Justice Alliance
House of Joe
Housing Works
Howard Brown Health Center
Hyacinth AIDS Foundation
Inova Juniper Program
International Rectal Microbicide Advocates (IRMA)
IV-CHARIS
Justice Resource Institute (JRI)
L.A. Gay and Lesbian Center
Lambda Legal
Lansing Area AIDS Network
Latinos Salud
Legacy Community Health Services
Lifelong
Long Beach AIDS Foundation, Inc.
Los Angeles County PrEP Workgroup
Los Angeles County Public Health Social Justice Caucus
Louisiana AIDS Advocacy Network
Maritime Life Precious Foundation
Minnesota AIDS Project
Mr Friendly
Multicultural AIDS Coalition
Nashville CARES
National Alliance of State & Territorial AIDS Directors (NASTAD)
National Association of County and City Health Officials
National Association of Social Workers
National Black Leadership Commission on AIDS, Inc.
National Coalition of STD Directors (NCSD)
National Female Condom Coalition
National Minority AIDS Council (NMAC)
National Women's Health Network
NO/AIDS Task Force
Ohio AIDS Coalition
Pediatric AIDS Chicago Prevention Initiative
Positive Women's Network- USA
PrEP for New York City Task Force
Prepolicious.org
Program for Wellness Restoration
Project Inform
Project PrEPare
Puerto Rican Cultural Center-Vida/SIDA
San Francisco AIDS Foundation
Scott A. Kramer, LCSW
SisterLove
Skills4
Sociologists AIDS Network
Southern AIDS Coalition
Southern HIV/AIDS Strategy Initiative
St. Louis Community PrEP Implementation Project (C-PIP)
START at Westminster
Tennessee Association of People With AIDS
Test Positive Aware Network
The AIDS Institute
The Network for Multidisciplinary Studies on ARV-based HIV Prevention (NEMUS)
The Stigma Project
The Well Project
The Women's Collective
Treatment Access Expansion Project
Treatment Action Group
Urban Coalition for HIV/AIDS Prevention Services (UCHAPS)
US Women & PrEP Working Group
Valley AIDS Information Network Inc.
VOCAL-NY
Whitman-Walker Health
Women With a Vision
Woodhull Sexual Freedom Alliance

[PRESO] PrEP Community Opportunities and Challenges

Last week, My PrEP Experience's Jim Pickett spoke at the PrEP Forum in San Francisco, with University of California San Francisco and other partners. His focus was on some of the opportunities and challenges associated with PrEP that communities, particularly gay men in the United States, are dealing with.

Take a look.

PrEP Community Opportunities and Challenges from Jim Pickett

If you would like to check out some slides that have more complete information on PrEP - how it works, side effects, adherence, what it doesn't do, how to get it, etc - check out slides from our Project Ready, Set, PrEP! training here.

Any questions about PrEP, feel free to email us.