Separating Science from Stigma Following the Charlie Sheen Disclosure

Charlie Sheen’s public disclosure of his HIV status, while producing some of the predictable backlash and stigmatizing comments we have come to expect, has also presented a fantastic opportunity to educate the general public about the current science concerning HIV, including treatments, treatment as prevention and the reality of transmission risks, as well as HIV criminalization.

Let’s face it–when it comes to HIV, an awful lot of people are stuck in the ’80s and ’90s. Just take a look at the tabloids or the comments sections on mainstream media articles about HIV. Many people still consider an HIV diagnosis a death sentence (and use HIV/AIDS interchangeably); they grossly exaggerate the actual risks of transmission; they have little to no understanding of the efficacy of current medications; they do not realize that adherence to medication makes transmission next to impossible–even without condoms.

And that’s dangerous. It perpetuates stigma around HIV, which, aside from being damaging to people living with HIV, discourages many from being tested or seeking treatment. That same stigma and lack of education around current science leads to the prosecution of people living with HIV even in cases where no transmission occurred or was even possible, and can even fuel violence (look what happened to Cicely Bolden when she disclosed to her partner–he claimed to have killed her because a) having already had condomless sex with her, he must have acquired HIV; and b) assuming he had acquired HIV, it meant he was going to die soon).

However you feel about Charlie Sheen as an actor or a person, the public attention his disclosure has drawn is the perfect opportunity to educate the public. That’s a win-win for people living with HIV and for those at risk of acquiring HIV. Share the video above, the infographic below and the articles linked below–provided by TheBody.com–on social media and by email with your friends, family, coworkers, community and anyone else who might need some education.

How Can I Prevent HIV Transmission?

Five Ways to Stay Strong: How Charlie Sheen’s Disclosure Affects People Living With HIV
In the wake of Sheen’s disclosure, hyperbolic headlines can trigger old, familiar feelings of fear and shame. From Dr. David Fawcett, a mental health therapist who has been living with HIV since 1988, here’s vital advice on how people with HIV can stay strong when stigma flares.

Fact-Checking Charlie Sheen’s HIV Disclosure Interview
Warren Tong, Senior Science Editor at TheBody.com, goes point-by-point to bring scientific accuracy to Matt Lauer’s interview of Charlie Sheen and his physician on the Today Show.

Charlie Sheen Deserves Your Scorn, but Not Because He Has HIV
“Please keep this in mind: The jokes you make about Charlie Sheen won’t hurt him. He’s a super wealthy celebrity in a culture that worships those. But most people living with HIV don’t have those advantages, and the stigmatizing jokes and misinformation can and do hurt them.”

LISTICLE: 12 Ways to Give HIV Stigma a Well-Deserved Side Eye
An engaging set of GIFs of iconic female celebrities accompanies an insightful list of arguments to counter HIV stigma in daily life.

VIDEO: Aaron Laxton: Overcoming Depression and Drug Use, Living Boldly with HIV
After a traumatic childhood, Aaron Laxton had to overcome a military discharge, depression and drug use to come to terms with his HIV diagnosis. Now a popular video blogger and spokesperson, he lives a healthy and vibrant life with his HIV-negative partner Philip and works with homeless veterans facing similar challenges. In this immersive video, Aaron and Philip share their story.

HIV Prevention Portal
The best of the Web on HIV prevention, with features, infographics, video and links to a wealth of content.

TheBody.com’s “Ask the Experts” Forums
For decades, TheBody.com has been a reliable and accessible resource for people seeking clear answers about HIV. Whether asking about the risk of a personal encounter to finding the best possible treatment to stay healthy when living with HIV or more, our experts are on the ready to answer a myriad of concerns and queries.

Personal Stories of People Affected by HIV
The real life stories of people with HIV are a source of support for others, and a counterbalance to misinformation, stigma and fear.

And here are some more good articles about HIV in the wake of the Charlie Sheen disclosure:

Why an HIV Diagnosis Is Treated Like a Crime in Most U.S. States (The Daily Dot)
A great article about HIV criminalization laws and why they are ineffective at preventing the spread of HIV while perpetuating stigma.

Charlie Sheen and Celebrity HIV Status (The Feminist Wire)
Great perspective on why Charlie Sheen’s disclosure should not distract from the very real intersectional issues facing so many people living with HIV.

People Are Terrified of Sex (The Atlantic)
Insightful article examining the particular stigma surrounding sexually transmitted infections, including HIV.

Charlie Sheen’s Diagnosis Offers Teachable Moment (USA Today)
A solid look at various angles of the disclosure and the ensuing conversation around HIV.

What It’s Like to Live with HIV/AIDS Today (video) – (CNN Headline News)
Great interview with HIV advocates.

And here are some concrete ways reporters, bloggers and anyone speaking in or through the media can avoid stigmatizing HIV.

For more articles, news and information, keep an eye on our Facebook page and Twitter!

National Day of Action to End Violence Against Women Living with HIV = Success

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October 23, 2015, was our second National Day of Action to End Violence Against Women Living with HIV (WLHIV)–and what a success it was! Thanks to an outpouring of support from our members, communities, allies and organizations working both in HIV and with intersectional issues:

  • Our Day of Action was endorsed by 92 organizations from around the world (see below) as well as an additional 84 individuals
  • Numerous and diverse organizations and individuals participated in our lively and informative Twitter Chat, co-hosted by the National Network to End Domestic Violence (@nnedv), SisterLove Inc. (@SisterLove_Inc) and The Well Project (@TheWellProject), the morning of October 23, using our hashtags #EndVAWHIV and #PWNspeaks
  • Our Flashblog to #EndVAWHIV includes 18 contributions, including the stories of WLHIV impacted by violence and trauma, as well as posts on the topic and intersectional issues from organizations and individuals dedicated to working with WLHIV and domestic violence survivors, several of which were also featured on HIVPlusMag.com and TheBody.com
  • At least 6 diverse organizations posted statements of support for the Day of Action on their websites
  • Countless individuals and organizations changed their Facebook and Twitter profile pictures to our official Day of Action logo
  • Across the country, people heard and discussed the stories of overcoming violence of 5 PWN-USA members in the Kaiser Family Foundation film, Empowered, part of the Greater Than AIDS campaign (see video below)

The goal of our Day of Action is, of course, not only to raise awareness–a critical first step–but also to put forward solutions. One of the major initiatives PWN-USA is working toward is routine implementation of trauma-informed model of care for WLHIV, especially in clinics receiving federal Ryan White Program funding. We are also working to repeal laws that place WLHIV at disproportionate risk of violence, including laws criminalizing HIV, which discourage testing and treatment while perpetuating damaging stigma by sending the message that people living with HIV are dangerous, as well as laws criminalizing sex work and drug use.

PWN-USA called for the first National Day of Action to End Violence Against WLHIV last year in the wake of the brutal murders of Cicely Bolden and Elisha Henson, both of Texas, following disclosure of their HIV status. Nationally, 55% of WLHIV have faced intimate partner violence–and women with a history of trauma are more vulnerable to acquiring HIV. Click here for more facts about violence against WLHIV, or read this excellent article on HIVEqual.org.

PWN-USA thanks the following organizations for partnering with us and/or endorsing our second National Day of Action to End Violence Against Women Living with HIV on October 23, 2015:

  • 30 for 30 Campaign
  • A Sister’s Gift Women’s Center, Dallas
  • ACT UP London
  • African Services Committee
  • AIDS Alabama
  • AIDS Foundation of Chicago
  • AIDS Project Los Angeles
  • AIDS United
  • Albanian Association OF PLWHA
  • APLA Health & Wellness
  • AS – Center For The Empowerment Youth Of People Who Are Living With HIV And AIDS
  • Aspirations
  • BABES-Network YWCA
  • Being Alive!
  • Bill’s Kitchen, Inc.
  • Caracole
  • Cascade AIDS Project
  • Center for Health and Gender Equity
  • Chicago Women’s AIDS Project
  • Christie’s Place
  • Colorado Organization for Latina Opportunity and Reproductive Rights (COLOR)
  • Counter Narrative Project
  • CoyoteRI
  • emPOWERed Legacies
  • Federal AIDS Policy Partnership Structural Interventions Workgroup (FAPP SIWG)
  • Fierce Caucus and Black Womens Caucus of Union Theological Seminary
  • FORCE Baltimore
  • Forward Together Oakland
  • G III Associates
  • Gay Men’s Health Crisis (GMHC)
  • GIRL U CAN DO IT, INC.
  • Global Justice Institute, Metropolitan Community Churches
  • Global Network of People Living with HIV, North America
  • GMFA The Gay Men’s Health Charity (London)
  • HAART Inc., Baton Rouge
  • Healthy & Free Tennessee
  • Hektoen Institute of Medicine
  • HIV Disclosure Project
  • HIV Prevention Justice Alliance
  • HIVE
  • Housing Works Brooklyn
  • Houston AIDS Research Team Cross-Network HIV CAB
  • Howard Brown Health Center
  • In Our Own Voice: National Black Women’s Reproductive Justice Agenda
  • International HIV Partnerships
  • International Network of People Who Use Drugs
  • Justice for All Coalition
  • Lambda Legal L.A.
  • Latino Commission on AIDS
  • Lee’s Rig Hub
  • National Female Condom Coalition
  • National HIV/AIDS Disability Project
  • National Network to End Domestic Violence
  • National Press Club,Nepal
  • National Working Positive Coalition
  • NYTAG
  • Older Women Embracing Life, Inc.
  • Our Story Inc.
  • Pediatric AIDS Chicago Prevention Initiative
  • Philadelphia Center
  • Philadelphia Department of Public Health Ambulatory Health Services PrEP Program
  • Positive Living Women Malaysia
  • PowerSource Tucson
  • PWN-USA Colorado
  • PWN-USA South Carolina
  • PWN-USA San Diego
  • PWN-USA Bay Area
  • PWN-USA Louisiana
  • PWN-USA Ohio
  • PWN-USA Michigan
  • PWN-USA Philadelphia
  • PWN-USA Georgia
  • ReShape
  • Ribbon Consulting Group
  • Sero Project
  • Sexuality Information and Education Council of the US (SIECUS)
  • SisterLove, Inc.
  • SisterReach, Memphis
  • SisterSong
  • Southwest Boulevard Family Health Care Kansas City
  • SKUC (Slovenia)
  • The Afiya Center
  • The Empowerment Program Denver
  • The Praxis Project
  • The Sophia Forum
  • The Well Project
  • The Women’s Collective Washington, DC
  • Transgender Law Center
  • Tunisian Association of Positive Prévention
  • Women & Life
  • WORLD (Women Organized to Respond to Life-Threatening Diseases)
  • Women With A Vision, Inc.
  • Women’s HIV Program at UCSF

Click below to watch and share the Kaiser Family Foundation film, Empowered, featuring 5 PWN-USA members in conversation with Tonya Lee Lewis:

And watch PWN-USA Georgia member Danielle, AKA Ghetto Rose, perform a spoken word piece on her experience with domestic violence:

Join the 2nd Annual Day of Action to End Violence Against Women with HIV, October 23, 2015

FOR IMMEDIATE RELEASE

Contact: Naina Khanna, nkhanna@pwn-usa.org / 510-681-1169

August 31, 2015 – For women living with HIV, trauma and violence are often deadlier than the virus. Join Positive Women’s Network – USA (PWN-USA), the premier voice of women leaders with HIV in the US, in saying ENOUGH! to the epidemic of violence against women with HIV. You’re invited to sign on as a partner or endorser for the second annual National Day of Action to End Violence Against Women Living with HIV!

dayofaction_logo
Official logo for the Day of Action.

On October 23, 2014, during Intimate Partner Violence Awareness Month, PWN-USA spearheaded the first-ever National Day of Action to End Violence Against Women Living with HIV (Day of Action) to respond to the high rates of interpersonal violence, abuse, and systemic brutality faced by women living with HIV – including several high-profile brutal murders of women because of their HIV-positive status. We joined with well over a dozen endorsing organizations to raise our voices in support of women with HIV of all gender identities and sexual expressions who face violence, and to demand solutions.

From local ruckus-raisings to educational events and a webinar featuring federal partners, 2014’s Day of Action was a tremendous success.  Since last year’s Day of Action, PWN-USA and the UCSF Women’s HIV Program jointly released a model of trauma-informed primary care useful for providers serving women living with HIV.

This October 23, the Day of Action’s impact and influence will be even broader – and you can help! Sign on early as a partner organization, bring the Day of Action to your community by organizing a virtual or in-person event, and improve culture, programs, and policy for women living with HIV.

“Last year’s events really helped to highlight policy and programmatic opportunities to address violence against women with HIV, as well as the cumulative effects of lifetime trauma,” says PWN-USA’s Executive Director, Naina Khanna. “From the White House to local Ryan White clinics and community-based organizations, we are seeing an emerging commitment to address this issue.”

Organizations that sign on as partners in the Day of Action commit to taking at least one of a number of bold actions to address violence against women with HIV on that day. As a partner, your organization name will be listed on our website, and your event or statement on the intersections of violence and HIV will be shared widely through PWN-USA’s channels. Read more about partnership and endorsement of the Day of Action

Three in every 4 women living with HIV in the US reports a history of gender-based violence, compared to 1 in 4 women in the general population. This is part of a larger context in which violence against women, especially women of color, has been normalized and accepted. The Day of Action, conceived entirely for and by women with HIV, was created to raise awareness about the effects and prevalence of violence against women living with HIV, break through the culture that keeps this issue in silence, and push for structural change, including policy changes to eliminate this disparity.

“Laws that criminalize people living with HIV and practices that perpetuate discrimination, including violations of our sexual and reproductive rights and stigmatizing portrayals of HIV in media, are part of the culture of violence against women living with HIV,” says Khanna.

On October 23, women living with HIV, as well as those who love and support them, are invited to take part in Day of Action events both online and in person, sponsored by our partner organizations as well as our nine regional chapters and independent members across the US. Stay tuned to www.pwn-usa.org between now and October to find out more about ways to get involved in your community as well as on social media.

“Everyone is invited to share thoughts, actions, or ideas using the hashtags #pwnspeaks and #EndVAWHIV on social media both during the event and leading up to it,” says Olivia Ford, PWN-USA’s Communications Director.

Sign on as a partner or endorser of the Day of Action TODAY! We can’t wait to work with you to end the culture of violence against women living with HIV.

PWN-USA Teams with Healthcare Providers to Release New Model for Trauma-Informed Care

FOR IMMEDIATE RELEASE

Contact: Olivia Ford – oford@pwn-usa.org – 347.553.5174

May 6, 2015 – Today, Positive Women’s Network – USA (PWN-USA), a national membership body of women with HIV, is proud to announce the release of a new model for bringing trauma awareness and healing into primary healthcare settings. The conceptual framework, developed in partnership with University of California – San Francisco (UCSF) clinician-researchers, provides a practical guide to help providers incorporate trauma-informed care into clinical practice.

“Trauma-informed care is the missing ingredient to engage women with HIV in care successfully and to ensure good health outcomes,” says Naina Khanna, Executive Director of PWN-USA, who co-authored the paper presenting the new model. Rates of intimate partner violence and post-traumatic stress disorder are estimated to be 55% and 30%, respectively – much higher than national rates – among women with HIV.

“HIV care and treatment cannot work if women can’t get to the healthcare provider in the first place, because they have trauma-adaptive coping mechanisms getting in the way of showing up,” Khanna says, “or because unaddressed trauma and a healthcare environment that ignores trauma are making it difficult for a woman to communicate with her provider about what her real healthcare needs are.”

The model was published today in the journal Women’s Health Issues, and calls trauma-informed primary care “a practical and ethical imperative for women’s health and wellbeing.”

“Addressing trauma is our opportunity to move beyond treatment to actual healing for women with HIV,” Khanna explains. Advocates believe that failure to heal from the effects of current and past trauma explains the crater in the HIV care continuum for women: Only  70% of women with HIV link to care, and fewer than half remain connected to care.

The paper’s lead author, Edward L. Machtinger, MD, director of the Women’s HIV Program at UCSF, called understanding the link between trauma and overall health “an epiphany for clinicians.”

“Many of us have spent years struggling to help our patients be genuinely healthy and strong, but did not realize that there was a missing ingredient in our care model,” said Machtinger, a pioneer in trauma-informed care research and practice.

“Because trauma is so common, we need to critically examine how the healthcare environment affects not only patients, but also providers and staff,” said Leigh Kimberg, MD, UCSF Professor of Medicine at San Francisco Hospital and Trauma Center and the paper’s senior author, in a recent statement. “By adopting foundational trauma-informed practices and policies, healthcare providers and staff promote increased safety, reliability, trust, and empathy to create a more healing environment for everyone.”

The changing landscape of healthcare delivery, and of the HIV care system, finds the US at a critical moment of opportunity to transform these systems. While the first National HIV/AIDS Strategy failed to address the parallel epidemic of violence and trauma among women, President Obama’s creation of an Interagency Federal Working Group on the Intersection of HIV/AIDS, Violence Against Women and Girls, and Gender-Related Health Disparities was an attempt to correct this oversight.

The next National HIV/AIDS Strategy will soon be released, and must fully integrate the Federal Interagency Workgroup’s call for trauma-informed approaches to be implemented in all settings where women with HIV receive care and services. The recently published care model provides a blueprint for providers to begin to make this vital commitment to their clients.

Figure 1. A framework for trauma-informed primary care

A framework for trauma-informed primary care.
A framework for trauma-informed primary care.

Read the full text of the paper, “From Treatment to Healing: The Promise of Trauma-Informed Primary Care,” in the journal Women’s Health Issues

Read the San Francisco Chronicle article “UCSF team: trauma screening should be standard in health care” (PDF)

Positive Women’s Network – USA Releases Recommendations for the Next US National HIV/AIDS Strategy

Women with HIV Demand a Minimum Standard of Care, Bold New Initiatives to Ensure High-Quality Services for Black Women and Transgender Women of Color

 

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

April 13, 2015 – Washington, DC – The next National HIV/AIDS Strategy (NHAS) must include factors vital to the survival and well-being of women living with HIV, according to Positive Women’s Network – USA (PWN-USA), a national membership organization representing women living with HIV.

Today, PWN-USA released a set of recommendations for consideration by the Office of National AIDS Policy (ONAP) as it develops the second iteration of the National HIV/AIDS Strategy. Among the recommendations is a demand for a minimum national standard of care for people living with HIV, which would include clinical and non-clinical quality of life guidelines. PWN-USA also strongly recommends developing a national initiative focused on access and quality of care for Black women living with HIV, and taking action to ensure transgender women’s access to culturally relevant prevention and services.

“As people with HIV are living longer, and are dependent on diverse sources of coverage for care and services, it is past time to define a national standard of high-quality care for people with HIV,” says Sharon DeCuir, a Baton Rouge-based service provider who serves as Vice Chair of the Board of PWN-USA. “This particularly applies in the South, where the impact of HIV is heaviest and most states have failed to expand Medicaid.”

Because of high rates of unmet need for sexual and reproductive healthcare services among women with HIV, the standards must include comprehensive, culturally competent, and non-stigmatizing sexual and reproductive healthcare for women of all ages, including transgender women, say leaders of PWN-USA. “The gender-sensitive, wide-ranging services provided in the Ryan White Part D program should serve as a standard for care for all women with HIV,” says Kari Hartel, a co-chair of PWN-USA’s Colorado chapter and a Part D service provider. In addition, advocates point to the high rates of post-traumatic stress disorder (PTSD), depression, and intimate partner violence experienced by people with HIV, and recommend that trauma-informed care practices be fully incorporated into the standards.

The HIV epidemic among women has disproportionately impacted Black women and other women of color. CDC surveillance data reveal that Black women have significantly higher death rates than White women (16.7 to 1), and that the majority of transgender women diagnosed with HIV are women of color. A 2009 report by the National Institutes of Health found that a third of US transgender women are living with HIV, indicating that focused attention to these communities ought to be a mandate.

“Women with HIV occupy spaces where the impacts of racism, patriarchy, poverty, transphobia, trauma, and HIV intersect, and profoundly impact the quality of their lives,” says Naina Khanna, Executive Director of PWN-USA. “Services for women must proactively address these conditions.”

The recommendations also include a demand for meaningful inclusion of people with HIV in decision-making processes, and prioritizing research, development, and dissemination of women-controlled HIV prevention methods.

“The priorities of the next National HIV/AIDS Strategy must be shaped by those most impacted by the shifts in policy direction the strategy will produce,” says Barb Cardell, Board Chair of PWN-USA and a steering committee member of the US People Living with HIV Caucus. “We are proud that these recommendations are the product of a consultative process involving a diverse group of women living with HIV throughout the US.”

Read the full recommendations

Download a PDF of the recommendations

Women with HIV Must Be a Priority in the Next US National HIV/AIDS Strategy

Download a PDF version of this document.

The next National HIV/AIDS Strategy (NHAS) must include factors vital to the survival and well-being of women living with HIV. Women continue to account for nearly a third of the estimated 1.2 million people living with HIV in the US, and rates of morbidity and mortality among women are high.[i] The next NHAS must address the unique needs of women living with HIV and must include priorities that extend beyond the HIV care continuum.

BACKGROUND:

HIV mortality rates among women reflect stark racial and gender disparities. Although women with HIV are more likely to be tested and to know their HIV status than men who have sex with men (MSM), among those retained in care, women have lower antiretroviral medication use and lower rates of viral suppression.[ii] Mortality rates among women with HIV reveal that Black women have significantly higher death rates than White women (16.7 to 1).[iii] In a 2013 study, researchers determined that youth were less likely to be linked to care, retained in care, and virally suppressed,[iv] indicating that the specific clinical care and support needs of women and youth living with HIV are inadequately addressed in existing healthcare systems. Researchers have documented multiple barriers to engagement in care for women living with HIV, including lack of transportation, child care responsibilities,[v] lack of financial resources, inability to take time off work for medical appointments, and symptoms of clinical depression.[vi] Approximately 30% of women with HIV are currently living with post-traumatic stress disorder (PTSD).[vii] These factors contribute to poor health outcomes and increased likelihood of death among women living with HIV.[viii]

The HIV epidemic among women is primarily an epidemic among women of color.[ix] Further, women with HIV overwhelmingly live in poverty, and are reliant on public healthcare services.[x] A 2009 report by the National Institutes of Health found that a third of transgender women in the US are living with HIV, and the majority of transgender women diagnosed with HIV are women of color.[xi] Women with HIV occupy spaces where the impacts of racism, patriarchy, poverty, trauma, and HIV intersect; services for women must proactively address this.

In addition, the HIV epidemic among women is geographically concentrated. 10 states account for nearly 70% of all HIV cases among women.i Nine Southern states and the Northeast region shoulder a disproportionate burden of the HIV epidemic among women, with New York and Florida alone accounting for nearly 70,000 women and girls living with HIV.[xii]

Expanding services that effectively link and retain women living with HIV in care and ensuring the offer of antiretroviral therapy are critical. However, viral suppression cannot serve as a proxy for optimal health outcomes for women living with HIV. Women with HIV also experience disproportionate intimate partner violence and trauma, and hold significant responsibility in caring for other family members. These multiple burdens are exacerbated by the effects of racism, sexism, and poverty. Further, as HIV has become a chronic, manageable condition, and as the population of women with HIV has aged, needs have expanded beyond medical care to include quality of life issues, such as mental health and employment-related services. For women, addressing HIV in 2015 demands a multi-pronged response, one that accounts for the various interconnected factors shaping their lives and looks towards securing health, dignity, and long-term well-being.

As a national membership body of women living with HIV, Positive Women’s Network-USA recommends the following 5 priority actions for the Office of National AIDS Policy (ONAP) in developing the next National HIV/AIDS Strategy:

  1. Meaningfully Involve Networks of People Living with HIV

Recommendation: ONAP should consider networks of people living with HIV (PLHIV) as key consultative partners – particularly the US People Living with HIV Caucus, the largest and most representative national coalition of people with HIV – in all issues pertaining to the PLHIV community. PLHIV networks are accountable to the constituencies they represent, are in regular contact with people with HIV throughout the country, and can bring significant expertise, experience and accountable representation to bear on planning and decision-making processes pertaining to policies and programs that impact our lives.

  1. Expand Gender-Responsive HIV Services to Holistically Address Women’s Needs and Improve Health Outcomes of Women with HIV

Recommendation 1: Develop a minimum standard of care for women with HIV who receive healthcare from any payer source. Such a standard should be adopted by the Centers for Medicare and Medicaid Services (CMS) as well as by the Ryan White Program. The following components should be included:

  • Culturally relevant care that affirms the sexual and reproductive healthcare needs of women with HIV at all life stages and of all gender identities, including transgender women.
  • High-quality clinical care – including affordable, accessible medication and insurance payment in areas where Medicaid has not been expanded under the ACA.
  • Trauma-informed care practices, including screening and intervention for lifetime abuse and intimate partner violence, in HIV clinical and community-based settings.
  • Services that facilitate women’s access to care as needed, including: childcare, transportation, substance use and mental health services, and housing.

Recommendation 2:  Define and implement a standard of gender-responsive care for people with HIV that includes the above sets of services. Prioritize funding for models that meet this standard within the Ryan White Program.

  1. Expand Access to Care and Improve Quality of Care for Black Women Living with HIV

Recommendation 1: ONAP should develop an initiative focused on improving quality of care and access to care for Black women living with HIV, with a focus on the geographic regions where Black women are most impacted.

Recommendation 2: ONAP should mandate anti-racism training for providers, clinicians, public health departments, and AIDS service organizations in geographic locations where at least 30% of people living with HIV are people of color.

  1. Increase Access to Culturally Relevant Prevention and Care for Transgender Women

Recommendation 1: All CDC- and HRSA-funded sites should adopt the two-step question: what was your assigned sex at birth and what gender do you identify as now?

Recommendation 2: ONAP must monitor ACA implementation to ensure fully inclusive and comprehensive healthcare delivery that addresses the needs of transgender women living with HIV, with a particular emphasis on transgender women of color.

  1. HIV Prevention Methods Must Prioritize Women and Be Responsive to Their Unique Needs

Recommendation: Prioritize the research, development and dissemination of HIV prevention methods that can be controlled by women.

Download a PDF version of this document.


 

[i] http://kff.org/hivaids/fact-sheet/women-and-hivaids-in-the-united-states/

[ii] Dombrowski, Julia C. et al. High Levels of Antiretroviral Use and Viral Suppression among Persons in HIV Care in the United States, 2010. Journal of acquired immune deficiency syndromes (1999) 63.3 (2013): 299–306. PMC. Web. 6 Apr. 2015.

[iii] http://www.cdc.gov/hiv/pdf/q-z/cdc-hiv-surveillance-in-women-2013.pdf

[iv] Hall H, Frazier EL, Rhodes P, et al. Differences in Human Immunodeficiency Virus Care and Treatment Among Subpopulations in the United States. JAMA Intern Med. 2013;173(14):1337-1344.

[v] Stein MD, Crystal S, Cunningham WE, et al. Delays in seeking HIV care due to competing caregiver responsibilities. Am J Public Health 2000;90:1138-40.

[vi] Cook JA, Cohen MH, Burke J, et al. Effects of depressive symptoms and mental health quality of life on use of highly active antiretroviral therapy among HIV-seropositive women. J Acquir Immune Defic Syndr 2002;30:401-9.

[vii] Machtinger, E. L., T. C. Wilson, J. E. Haberer, and D. S. Weiss. “Psychological trauma and PTSD in HIV-positive women: a meta-analysis.” AIDS and Behavior 16, no. 8 (2012): 2091-2100.

[viii]Ickovics JR, Hamburger ME, Vlahov D, et al. Mortality, CD4 cell count decline, and depressive symptoms among HIV-seropositive women: longitudinal analysis from the HIV Epidemiology Research Study. JAMA 2001;285:1466-74.

[ix] http://www.cdc.gov/hiv/pdf/q-z/cdc-hiv-surveillance-in-women-2013.pdf

[x] Women’s Interagency HIV Study: https://statepiaps.jhsph.edu/wihs/invest-info/dossier.pdf, and The HIV Cost and Services Utilization Study: http://www.rand.org/pubs/research_briefs/RB4523/index1.html.

[xi] http://www.cdc.gov/hiv/risk/transgender/

[xii] Reif, Susan, et al. HIV Diagnoses, Prevalence, and Outcomes in Nine Southern States, J. Community Health, Dec. 2014, https://southernaids.files.wordpress.com/2015/01/hiv-diagnoses-prevalence-and-outcomes-in-nine-southern-states-final.pdf

Bee Day 2015: Advocating for Reproductive Health in South Carolina

By Stacy Jennings, PWN-USA Member

On March 25, 2015, many lobbyists – including me – from the grassroots e-advocacy network “Tell Them,” which works to improve reproductive health policy in South Carolina, gathered for an opportunity to meet with House Representatives seeking their support for a much needed bill.

Watch my video about why participating in Bee Day was so important to me:

Support is very much needed for reproductive health policies to include Bill (H.3447). This bill would ensure that young persons be taught medically accurate and evidence-based information pertaining to sexual and reproductive health. The bill will ensure that all school districts in South Carolina comply with the existing Comprehensive Health Education Act.

Tell Them advocates have been responsible for speaking out for two other bills to pass, which include:

(S.278 + H.3204) Cervical cancer prevention:

This bill authorizes South Carolina’s Department of Health and Environmental Control to provide 7th graders in South Carolina schools with a series of vaccines and information regarding vaccinations, including the HPV vaccine to prevent cervical cancer;

(S.3) Domestic violence reform:

This bill is responsible for strengthening criminal domestic violence laws to increase penalties for perpetrators, and making state law compliant with federal law in denying legal ownership of firearms for those found guilty of domestic violence.

 

Want to know more about Bee Day?

 

Stacy Jennings lives in Columbia, South Carolina, and is a member and co-Representative to the Strategic Communications Action Team for PWN-USA-South Carolina.

When Ignorance Kills, Nobody Wins: Advocates Reflect on an HIV-Related Murder Case

By Morénike Giwa Onaiwu and Venita Ray

Elisha Maxine Henson was a Texas mother with a big love for family, especially her two sons. A stay-at-home mom with a bright smile, Elisha enjoyed riding motorcycles and was a member of a local church. Elisha was well liked and had many friends. Previously employed in the fast food industry, Elisha was living with HIV and was very open about her HIV status. Unfortunately, as a result of her openness, she experienced stigma in the small town where she lived.
Earlier this week, 23-year-old Justin Welch pled guilty to the first-degree murder of 30-year-old Elisha, who was strangled to death on April 26, 2014. Welch was sentenced to 50 years in prison. In a May 2014 police interview, Welch admitted to the murder and expressed anger and fear that he had been exposed to HIV through sexual contact with Elisha.

The overall risk of female-to-male transmission of HIV is extremely low and the risk of HIV transmission for a male receiving oral sex from a woman living with HIV is virtually zero. However, despite the lack of risk, inaccurate information and stigma surrounding HIV are pervasive, often resulting in negative consequences, as in this case and sadly in others.

Immediately after news of Henson’s murder became public, there was a national outcry from advocates around the country, including Positive Women’s Network – USA, a national membership body of women living with HIV. In addition to issuing a statement of solidarity with the family and condemning HIV-associated stigma and violence, Texas HIV advocates engaged in a variety of advocacy efforts to support the grieving family, to encourage responsible, non-stigmatizing media coverage, and to demand justice from the legal system. In the months that have followed, advocates have followed the case with interest and have continued to raise awareness about the devastating consequences of both HIV stigma and violence perpetuated against women living with HIV, declaring a National Day of Action to End Violence Against Women with HIV to honor Elisha, Cicely Bolden, and others.  Sadly, three out of four women living with HIV experience violence; this rate, which is far greater than the rate of violence for HIV-negative women, is unacceptable.

The price of stigma and violence is too great to bear. At only 30 years of age, Elisha is dead, leaving her two young sons, mother, siblings, and friends to mourn her absence. Welch will serve a minimum of 25 years of his 50-year prison sentence. Rosalind Smith, who has been charged as an accomplice, has yet to go to trial for her role; it has been alleged that Smith helped dispose of Henson’s body.  This is an example of senseless violence and unnecessary loss for an act that had virtually zero risk of HIV transmission.

Several months after the tragic day that Elisha was killed, many lives have been negatively impacted and will continue to be affected for years to come. The consequences of HIV stigma are deadly, and only through eradicating stigma and fostering understanding of transmission risks, compassion, and acceptance of people living with HIV will we avoid further tragedies, death, and loss.

We can’t bring Elisha, Cicely, or any of the victims of HIV-related deaths back, but we can work to prevent this from happening again.  We must acknowledge the insidious ways that HIV stigma contributes to the devaluing of the lives of women with HIV – and the potential deadly consequences of stigma coupled with misinformation about HIV transmission. We challenge everyone, regardless of HIV status, to get accurate, up-to-date information about HIV, and to share that information with others. We also challenge everyone to take an active role in eliminating HIV stigma by talking back to stigma in our daily lives, including our places of work, family, friends, doctors, and even in the media. We all have a role to play in eliminating violence against people living with HIV.

Break the Culture of Violence Against Women with HIV and All Women

First-Ever National Day of Action to End Violence Against Women with HIV Observed on October 23 With Rallies, Ruckus-Raisings and Social Media Actions Across the US

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

October 23, 2014 – Violence against women with HIV is part of a larger context and culture in which violence against women, especially women of color, has been normalized and accepted. On October 23, we’re saying ENOUGH!

doa_squarememe_arialToday, during Intimate Partner Violence Awareness Month, Positive Women’s Network – USA (PWN-USA), the premier voice of women leaders with HIV in the US, joins with more than a dozen endorsing organizations to raise our voices in support of women with HIV of all gender identities and sexual expressions who face violence, and the trauma that violence leaves in its wake.

Did you know:

  • There’s a crater in the HIV care continuum for US women between linkage to care (70%) and staying in care (41%). Evidence is growing that healing the effects of trauma is key to filling that gap. Intimate partner violence (IPV) screening, and a trauma-informed approach, must become the norm for women with HIV in clinical and community-based settings to break the cycle of violence, trauma and HIV.
  • For women living with HIV, violence is more deadly than the virus. A large study of women with HIV showed that those reporting recent abuse were 42% more likely to die than those who did not report recent trauma.
  • Women with HIV who have experienced IPV could fill an entire city. There are roughly 300,000 women living with HIV in the US. More than half have experienced IPV. That’s more than the population of Green Bay, Wisconsin; Berkeley, California; Peoria, Illinois; or Columbia, South Carolina.
  • An analysis of studies in transgender and cisgender women showed that those reporting ongoing trauma had 4 times greater odds of having their HIV treatment stop working.
  • 1/3 of US WLHIV have diagnosable post-traumatic stress disorder (PTSD). This is what veterans live with when returning from war.
  • 3 in every 4 US women living with HIV report a history of gender-based violence (compared with 1 in 4 women in the general population). Failure to address trauma is selling MOST women living with HIV short on their care, and the quality of their lives.

You should know:

These statistics are stories. For many PWN-USA members and leaders, the work of ending violence and trauma for women with HIV is all too personal – and what’s personal is political:

“I am no longer taking responsibility for your abuse. It’s not my fault.– Jay Blount, Co-Chair, PWN-USA-San Diego

“I have experienced domestic violence firsthand. I made the violence normal; I blamed myself for everything that happened, until I found someone who had the same experiences, who showed me where to get help. I have walked in the shoes of women survivors of violence; when they look at me and see the advocacy I’m doing now, they might think, ‘Maybe I can do helpful things for someone else, too.’” – LaDonna Boyens, Co-Chair, PWN-USA-Philadelphia

noviolence_image“Our lives matter! Women living with HIV are the strongest women I know, determined to survive. What has happened to so many of us in the past drags us under the surf and drowns us … help a sister out. Trauma-informed care, programs that identify PTSD and IPV, economic justice and protecting the rights of ALL women can change the world and MUST be a part of every program or funding opportunity.” – Barb Cardell, Co-Chair, PWN-USA-Colorado

“I know a couple of women that have been violently beaten on dates with men once they disclosed their HIV status. One of these women was hospitalized from the beating; both women had undetectable viral loads, which studies show means they had virtually zero chance of transmitting the virus. Women who are with a partner that abuses them may feel stuck in the relationship for fear of having to disclose their status to possible new partners. HIV stigma and criminalization laws contribute to an environment that devalues the lives of women with HIV and puts us at risk of violence – or even murder, like the recent case of Elisha Henson in Texas.” – Olga Irwin, Outreach Coordinator, PWN-USA-Ohio

“I have high hopes that we will succeed in shedding light on one of America’s dirtiest behind-closed-doors secrets.  IPV is not just a problem affecting resource-limited countries. It is a significant problem also in one of the richest, most scientifically developed countries with the best doctors and antiretroviral treatments in the world. This Thursday, the Bay Area of California will call out, and remember out loud, the names of women, including transgender women, that we have laughed and cried with through many seasons, whose lives were cut short by the violence within their homes, and who could not be saved by medication alone. Stand with us this Thursday, and shine a light against violence.” – Loren Jones, Co-Founder, PWN-USA-Bay Area

“Women should be loved not hurt for disclosing their HIV status! I feel that sharing my status is the best APHRODISIAC there is. Being loved/in love should never hurt!!!!” – Naimah Oneal, Co-Chair, PWN-USA-Ohio

violence_thrive“This is a poem that helps me to have courage to change my ‘don’t talk about it’ conditioning:

Unlearning To Not Speak

She must learn to speak
Starting with I
Starting with We
starting as the infant does
With her own true hunger
and pleasure
and rage.

– Marge Piercy – Cynthia Sanchez, PWN-USA-Bay Area

 

Things You Can Do on the October 23 Day of Action:

  1. Check out our social media toolkit! Includes talking points and recommendations for action
  2. Change your Facebook and/or Twitter profile image to one of the images provided in the toolkit
  3. Tweet and post on Facebook using the toolkit’s sample tweets and posts (or create your own); be sure to use the Day of Action hashtag #EndVAWHIV
  4. Raise your voice! Share your experiences! Contribute to a flash blog
  5. See what in-person events are happening throughout the US in Denver, Oakland, and beyond
  6. Read up on violence, trauma, women with HIV, and what you can do using these amazing resources:

PWN-USA Violence Against Women Fact Sheet

Healing Trauma and Ending Violence Against Women Are Crucial for Improving HIV Health Outcomes:  Moving From Recommendations to Action – Fact Sheet (PDF)

Update on Federal Progress Addressing the Intersections of Violence Against Women, HIV, and Trauma

The Intersection of Women, Violence, Trauma, and HIV – Fact Sheet (PDF – From AIDS United)

HIV, Intimate Partner Violence, and Women: New Opportunities Under the Affordable Care Act (From Kaiser Family Foundation)

DV & HIV/AIDS Toolkit for Providers (From National Network to End Domestic Violence)

2013 Report on Lesbian, Gay, Bisexual, Transgender, Queer, and HIV-Affected Intimate Partner Violence (From National Coalition of Anti-Violence Programs)

PWN-USA Congratulates UCSF Women’s Health Clinic on Landmark Study of Women, Trauma and HIV Disclosure

Tools for Advocates to Respond to a Young Woman’s HIV-Related Murder

#SaveWomensLives #DVAM #decolonizeDVAM #EndVAWHIV #pwnspeaks

 

Social Media Tools: Day of Action to End Violence Against Women with HIV

On October 23, join us in breaking the culture of violence against women with HIV and all women!

Things You Can Do on the October 23 Day of Action:

  1. Change your Facebook and/or Twitter profile image to one of the images below
  2. Tweet and post on Facebook using the sample tweets and posts below (or create your own) using the Day of Action hashtag #EndVAWHIV
  3. Contribute to a flash blog
  4. Find an event in your area, or organize your own! Helpful fact sheets here, and talking points below

 

SOCIAL MEDIA TOOLKIT

On October 23, let’s cover Facebook, Twitter, and any other social media we use with messages and images saying ENOUGH!!! to the epidemic of violence – physical as well as structural – against women living with HIV, and demanding solutions. Below are some sample tweets you can use on your own Twitter feeds to help you get started on and around the National Day of Action to End Violence Against Women with HIV. If you’re new to Twitter, this day is a great chance to see, and even jump into, some action!

The hashtag for our Day of Action specifically is #EndVAWHIV use it wherever you can!

These posts can be used anytime this month alongside more general hashtags like #DVAM (Domestic Violence Awareness Month) #SaveWomensLives #VAW (Violence Against Women) to bring HIV community messages and demands to the national conversation around this awareness month.

You can also use #decolonizeDVAM especially for messages that highlight violence against women as a structural injustice.

And of course there is #pwnspeaks – PWN-USA’s overall advocacy hashtag.

Let’s get started!

 

SAMPLE TWEETS

No more social tolerance of violence against women with HIV! #EndVAWHIV #DVAM http://wp.me/P38S1J-M5

 

From intimate partners to social institutions: Stop the brutality against women with HIV! #EndVAWHIV #DVAM http://wp.me/P38S1J-Z

 

Violence faced by #women living with #HIV is experienced at the individual, community and institutional level. #EndVAWHIV #decolonizeDVAM

 

Promote IPV screening, #StandUpToStigma, repeal #criminalization laws that make people w/ #HIV a “viral underclass” #EndVAWHIV #DVAM

 

Intimate partner violence is about power; #HIV status can compound power imbalances. #EndVAWHIV #decolonizeDVAM http://wp.me/P38S1J-Z

 

Fight laws criminalizing #HIV status that leave women more vulnerable to abuses of power. #EndVAWHIV #decolonizeDVAM http://wp.me/P38S1J-Z

 

Freedom from violence is a human right! #EndVAWHIV #DVAM http://wp.me/P38S1J-M5

 

We’re all worthy of a fulfilling life, free of violence. This #DVAM, defend #humanrights and dignity of women w/ HIV! #EndVAWHIV

 

Violence against #women because of their #HIV status is a hate crime. #EndVAWHIV #DVAM http://wp.me/P38S1J-Z

 

Law enforcement: Treat #violence against #women due to #HIV status as the hate crime it is. #EndVAWHIV #DVAM http://wp.me/P38S1J-Z

 

What are the @WhiteHouse and feds doing to #EndVAWHIV this #DVAM? Check out their progress: http://wp.me/p38S1J-MR

 

Where’s the action at the federal level to end #violence and heal #trauma among #women w/ #HIV? http://wp.me/p38S1J-MR #EndVAWHIV

 

For women with #HIV, violence is more deadly than the virus. #EndVAWHIV #DVAM http://wp.me/P38S1J-Z

 

At @WHP_UCSF clinic, 8 of 9 #WLHIV who died in recent yrs were on #HIV meds, died of #trauma’s effects #EndVAWHIV http://wp.me/P38S1J-Z

 

1/3 of US #women w/ #HIV have #PTSD. This is what veterans live with when returning from war. #EndVAWHIV #DVAM http://wp.me/P38S1J-Z

 

We must heal #trauma in order to treat #HIV. Self-care can’t be fully realized until self-worth is present. #EndVAWHIV #DVAM http://wp.me/P38S1J-Z

 

Break the culture of violence against women with HIV and all women! #EndVAWHIV #DVAM http://wp.me/P38S1J-M5

 

SHORTLINKS TO RESOURCES:

“Get Involved”: http://wp.me/P38S1J-M5

Violence Against Women fact sheet: http://wp.me/P38S1J-Z

Federal Progress Addressing the Intersections of Violence Against Women, HIV, and Trauma: http://wp.me/p38S1J-MR

 

SAMPLE FACEBOOK POSTS

Violence against women with HIV is part of a larger context where violence against women, especially women of color, has been normalized and accepted. ENOUGH! #EndVAWHIV

 

No more social tolerance of violence against women with HIV! HIV stigma and criminalization contribute to an environment that devalues the lives of women with HIV. The lives of women with HIV matter! #EndVAWHIV

 

Criminalization of HIV and attempts to control the sexuality and reproduction of women living with HIV (eg by shaming women with HIV about sexuality or parenthood desires) are forms of structural violence against women with HIV and may lead to increased intimate partner violence. The lives of women with HIV matter! #EndVAWHIV

 

For women living with HIV, violence is more deadly than the virus. A large study of women with HIV showed that those reporting recent abuse were 42% more likely to die than those who did not report recent trauma. #EndVAWHIV

 

Violence + HIV can make for a deadly combination. Violence and HIV together can result in health outcomes worse than either condition by itself. Violence & HIV hurt women’s health, women’s bodies, and women’s lives. #EndVAWHIV

 

We must heal trauma in order to treat HIV. Self-care can’t be fully realized until self-worth is present. Heal the whole woman, mind, body, and spirit. #EndVAWHIV

 

Freedom from violence is a human right! We are all worthy of living a fulfilling life, one free of violence. Defend the human rights and dignity of women with HIV! #EndVAWHIV

 

Violence against women because of their HIV status is a hate crime. Law enforcement officials must be made aware of the fact that HIV disclosure can have violent consequences, and these acts of violence must be prosecuted as the hate crimes they are. #EndVAWHIV

 

There’s a crater in the HIV care continuum for US women between linkage to care (70%) and staying in care (41%). Evidence is growing that healing the effects of trauma is key to filling that gap. Screening for intimate partner violence, and a trauma-informed approach, must become the norm in women’s HIV care to break the cycle of violence, trauma and HIV among women. #EndVAWHIV

 

Violence can be deadly – as well as the trauma that violence leaves behind. An analysis of studies in transgender and cisgender women showed that those reporting ongoing trauma had four times greater odds of having their HIV treatment stop working. #EndVAWHIV

 

Even for women who are connected to HIV care and treatment, violence and trauma remain profound barriers to the ability of women living with HIV to lead healthy, fulfilling lives. #EndVAWHIV

 

Women with HIV who have experienced IPV could fill an entire city. There are roughly 300,000 women living with HIV in the US. More than half have experienced IPV. That’s more than the population of [insert city from below here]

  • Kansas City, Kansas
  • Paterson, New Jersey
  • Waco, Texas
  • Green Bay, Wisconsin
  • Berkeley, California
  • Peoria, Illinois
  • New Haven, Connecticut
  • Columbia, South Carolina

(Data from census.gov)

 

Healing the effects of trauma could be the missing piece of the HIV care continuum. Providers for women with HIV must implement trauma-informed care and IPV screening to save and improve women’s lives. #EndVAWHIV

 

LONGER TALKING POINTS

 

From intimate partners to social institutions: Stop the brutality against women with HIV! Violence faced by women living with HIV is experienced at the individual, community and institutional level. Promote screening for IPV, fight HIV stigma in all its forms, and repeal HIV criminalization laws that render people living with HIV a vulnerable “viral underclass.” Encourage senators and representatives to support legislation like HR. 1843; S. 1790: The REPEAL (Repeal Existing Policies that Encourage and Allow Legal) HIV Discrimination Act of 2013

 

Intimate partner violence is about power; HIV status can compound these power imbalances. Oppose violence against women with HIV by fighting laws that criminalize HIV status and leave women even more vulnerable to abuse of power; encourage senators and representatives to support legislation like HR. 1843; S. 1790: The REPEAL (Repeal Existing Policies that Encourage and Allow Legal) HIV Discrimination Act of 2013; and support programs like Common Threads that promote economic justice and healing for women with HIV.

 

Failure to address trauma is selling MOST women with HIV short on their care. 3 in every 4 US women living with HIV report a history of gender-based violence (compared with 1 in 4 women in the general population). Healing the effects of trauma is the missing piece of the HIV care continuum that could help women with HIV stay connected to care and radically improve the quality of their lives. Screening for intimate partner violence, and a trauma-informed approach, must become the norm in women’s HIV care to break the cycle of violence, trauma and HIV among women.

 

SOCIAL MEDIA IMAGES (More coming soon!)

 

doa_squarememe doa_squarememe_nocaps doa_squarememe_arial

 

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Image credit: National Network to End Domestic Violence
Image credit: National Network to End Domestic Violence