Honoring the Legacy of the Obama Administration on HIV

December 1, 2016: This #WorldAIDSDay, Positive Women’s Network – USA honors President Obama’s legacy in addressing the domestic HIV epidemic. Over the past eight years, the Obama Administration has advanced essential human rights protections for people living with HIV while ensuring meaningful involvement of the communities most impacted by HIV.

president_official_portrait_hiresIn 2010, President Obama formally finalized the repeal of the HIV travel ban, which barred entry into the U.S. of people living with HIV, allowing the International AIDS Conference to return to the U.S. following an absence of more than 2 decades. The move not only ended a policy of state-sanctioned discrimination, it conveyed an accurate public message that people living with HIV are not a public health threat, and that banning or isolating people living with HIV is not the way to fight the epidemic.

Candidate Barack Obama committed to develop and release a national plan to address the domestic HIV epidemic – a promise he fulfilled in July 2010 with the release of the first ever National HIV/AIDS Strategy (NHAS), a comprehensive approach to domestic HIV prevention, care, and social justice issues intersecting with human rights. In particular, we commend President Obama for the Administration’s focus within the NHAS on review and repeal of HIV criminalization laws, increased employment opportunities for people living with HIV, and, more recently, commitment to addressing HIV-related stigma through broad-based social action. The Affordable Care Act prohibited insurers from discriminating against people with pre-existing conditions (including HIV) and increased access to essential sexual and reproductive health services, including guaranteed coverage of contraception, preventive services for women’s health, and screening for domestic violence.

obama-wad-2013President Obama reactivated and redefined the Presidential Advisory Council on HIV/AIDS (PACHA), which was first convened by President Clinton in 1995 but receded under President Bush, with few meetings or recommendations and some questionable appointments. Under President Obama, PACHA not only increased representation and meaningful participation of people living with HIV from impacted communities, including young people, people of color and of trans experience, but also maximized their expertise and contributions in developing the updated NHAS 2020 and the federal action plan.

We would additionally like to take this opportunity to honor and uplift the following individuals who have helped to vision, lead, and organize a coordinated and powerful domestic HIV response in the Obama Administration.

crowley_colorJeffrey Crowley

Jeff Crowley was the first Director of the White House Office of National AIDS Policy in the Obama Administration as well as Senior Advisor on Disability Policy, serving in these capacities from February 2009-December 2011. Jeff led the development of our country’s first domestic National HIV/AIDS Strategy (NHAS) for the United States, which continues to guide the Administration’s efforts in this area. He also coordinated disability policy development for the Domestic Policy Council and worked on the policy team that spearheaded the development and implementation of the Affordable Care Act. Since leaving the White House, Jeff has remained deeply involved in the community and instrumental as a policy expert and thought leader on HIV, disability issues, and access to healthcare for low-income communities. Thanks, Jeff, for your ongoing commitment to people living with HIV.

gregorio-millettGregorio Millett, MPH

Detailed from the Centers for Disease Control and Prevention (CDC), Greg Millett served as Senior Policy Advisor at ONAP, helping to write the first National HIV/AIDS Strategy. Greg’s extensive research on HIV incidence among black gay and bisexual men has helped to frame a national conversation on the importance of addressing HIV in this community.

jamesalbino-e1311377540427-150x150James Albino

James Albino served as Senior Program Manager in the White House Office of National AIDS Policy during Jeff Crowley’s tenure, leaving to head the White House Task Force on Puerto Rico. While at ONAP, James was instrumental in the creation of the Federal Interagency Workgroup on HIV, Violence Against Women, and Gender-Related Health Disparities. He also championed a domestic focus on the Latinx community as well as funding and HIV services for Puerto Rico.

lynnrose_0Lynn Rosenthal

As Senior Advisor to Vice President Biden, Lynn Rosenthal served as the White House Advisor on Violence Against Women and co-chaired the Federal Interagency Workgroup on HIV, Violence against Women, and Gender-related Health Disparities. Lynn’s commitment to hearing directly from impacted communities was clear to us, as was her background in leading direct service provision. As a keynote speaker at PWN-USA’s 2012 International AIDS Conference pre-conference for women living with HIV, Ms. Rosenthal stayed and spent time with our members for several hours to better understand their experiences. We value and appreciate this kind of commitment to the community.

grant-colfax-204x300Grant Colfax, MD

Grant Colfax served as Director of ONAP from March 2012 through December 2013, during which time he helped develop and launch the HIV Care Continuum Initiative, designed to increase access to HIV testing, care, and treatment rates.

 

 

douglas-brooksDouglas Brooks, MSW

Under Douglas Brooks’ leadership, the White House Office of National AIDS Policy (ONAP) was guided for the first time by a Black gay man openly living with HIV. He showed commitment to addressing the disproportionate impact of HIV on Southern states, gay and bisexual men, Black women, youth, and the transgender community, as well as to exploring and addressing the complexities of disclosure. We appreciate Douglas ensuring a focus on addressing stigma, as well, as employment, in the NHAS.

amy-lanksyAmy Lansky, PhD, MPH

Dr. Amy Lansky began serving as Director of ONAP in March 2016 upon Douglas Brooks’ departure and previously played a key role in the writing and release of NHAS 2020. Under Amy’s leadership, new developmental indicators for the National HIV/AIDS Strategy addressing stigma, and engagement in care and treatment for women of trans experience were released today. We are additionally appreciative of Amy’s presentation at PWN-USA’s Speak Up! Summit this September, demonstrating her commitment to advancing and investing in PLHIV leadership.

Groundbreaking Report Identifies Unique Needs of Women Living with HIV, Challenges to Engagement in Care

**FOR IMMEDIATE RELEASE**

Contact: Jennie Smith-Camejo, jsmithcamejo@pwn-usa.org, 347-553-5174

 March 10, 2016 – “What would improve your ability to stay in care?” That is the fundamental question 14 researchers, all women living with HIV, asked 180 participants from seven different geographic areas in a community-based participatory research project spearheaded by Positive Women’s Network – USA (PWN-USA), a national membership body of women with HIV. Participants were then asked about which specific services they needed, which services they currently had access to, and how well those services were meeting their needs. Among the key findings:

  • Women living with HIV are living in extreme poverty. 89.7% of the women surveyed were below 138% of the Federal Poverty Level (FPL), with 73.8% below 100% FPL.
  • Poverty affected more than just their ability to pay for drugs and medical services. 50% of respondents who had missed a medical appointment in the past year cited transportation as the reason.
  • 17% of respondents had been diagnosed with post-traumatic stress disorder (PTSD) and9% with depression. Cost, lack of coverage, lack of available services or waitlists for services presented significant barriers for many women in accessing these services.
  • While most respondents had been screened for cervical cancer according to current guidelines, only 40% of women of reproductive age had been asked if they needed birth control; just 39.4% had been asked if they wanted to get pregnant. And shockingly, 38.1% of participants had not been told by a provider that achieving viral suppression would dramatically reduce risk of transmission.

The Ryan White CARE Act, first passed by Congress in 1990, has been a life-saving safety net program for hundreds of thousands of women living with HIV, serving as a payer of last resort for medical care and the supportive services that so many people living with HIV—particularly women, who are so often heads of household and responsible for multiple generations living under one roof—need in order to stay engaged in care. The Ryan White Program is due to be reauthorized and remains desperately needed, particularly in states that have refused to expand Medicaid.

The Ryan White Program is working well, but the needs of people with HIV have changed and some women are still simply not able to access the services they need to stay in continuous care. “One thing that struck me is how many women need counseling and mental health assistance, but don’t know how to go about getting it,” said Pat Kelly of Orangeburg, South Carolina, one of the community-based researchers on the project.

For others, stigma or inadequate knowledge among medical providers means women living with HIV are not receiving comprehensive sexual and reproductive care that affirms their rights and desires to have families post-diagnosis. “I believe if more providers discussed the option of treatment as prevention with their patients, especially female patients, it would open up more opportunities for the patients to consider starting a family safely. For a lot of women living with HIV in their childbearing years, having a family is important. Many of them still think it’s not possible to do safely. But if this conversation starts happening with their providers, it will give them a choice and hope. All women should have that choice,” explained Evany Turk, research team member from Chicago, IL.

PWN-USA will be presenting more detailed information about these and other important findings of the project today on a webinar, “Securing the Future of Women-Centered Care,” at 1 PM EST/10 AM PST, and will host a Twitter Chat with special guests Greater Than AIDS and The Well Project at 3 PM EST to continue the conversation using the hashtags #NWGHAAD and #PWNspeaks.

The full report is available here.

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women centered care graphic

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!

Updating the National HIV/AIDS Strategy: Vote for the Recommendations Most Vital to Women with HIV!

Can you believe it’s been almost FIVE YEARS since the first National HIV/AIDS Strategy (NHAS) was released in July 2010?

The NHAS is a plan created under President Obama to comprehensively address the domestic HIV epidemic. The first NHAS included four main goals: 1) reducing the number of new HIV infections 2) increasing access to care for people living with HIV 3) addressing population-level disparities in prevention, care and treatment and 4) improving coordination of HIV programs and funding across federal agencies.

The first NHAS addressed some issues which are really important to women with HIV, including repealing HIV criminalization laws and expanding employment opportunities for people with HIV. But it missed the boat on others – failing to mention sexual and reproductive healthcare for people with HIV, failing to talk about the high rates of trauma and violence that impact women with HIV, and not meaningfully addressing the specific needs of transgender women.

Now, the White House Office of National AIDS Policy (ONAP) is soliciting input for the next National HIV/AIDS Strategy, which will be released this summer. This new Strategy (NHAS 2.0) will help to guide priorities for the domestic epidemic, likely for the next five years – which means it will go into the next Administration. It’s critically important that the voices of women with HIV and those who care about us are heard in this process.

The deadline to provide input ends this Friday, May 22nd. Here’s how to provide input:
1. Go to: https://nhas.uservoice.com
You can enter your email address to create a profile.
2. You will see that the opportunity to provide input is grouped into “feedback forums” according to the four goals of the National HIV/AIDS Strategy. You can click on any of the feedback forums to see which ideas have already been proposed.
3. Once you have access to a profile, you have two options:
a. Vote for a recommendation that has already been proposed
b. Propose a new recommendation
You can do both of these.
Note that you get 25 votes per feedback forum. You can vote for multiple recommendations, and you can also cast more than one vote per recommendation.

There are a lot of good recommendations already proposed in the forum. Also, a few weeks ago, PWN-USA released our own top five recommendations for the next National HIV/AIDS Strategy. In line with PWN-USA’s policy agenda and NHAS recommendations, here are just a few of the recommendations which have been proposed on ONAP’s forum that we think are really important. Click the links below to read more about each one. Starred (***) items are drawn from PWN-USA’s five top recommendations!

1. Reducing new HIV infections
a. Lift the ban on federal funding for syringe exchange
2. Increasing access to care & improving health outcomes for people living with HIV (PLHIV)
a***. Develop a minimum standard of care for PLHIV which includes sexual and reproductive healthcare, trauma-informed care, supportive services, and more.
b. Ensure gender-responsive, trauma-informed, coordinated and comprehensive care (this is very similar to the one above).

c***. Announce a national initiative focused on addressing inequity in access to care and poor health outcomes among Black women living with HIV

d***. Launch a national initiative to enhance culturally relevant prevention and care for transgender women
e. Ensure that PLHIV have access to healthy food: “Food as Medicine”
f. Increase and prioritize funding for services that link PLHIV into care
g. Preserve and support women-focused community-based HIV organizations
h. Integrate the work of the Federal Interagency Working Group on HIV and Violence against Women into the NHAS by instituting metrics on addressing trauma and violence

3. Addressing disparities and health inequities
a***. Fund research and development of women-controlled HIV prevention tools
b. Mandate comprehensive sex education in schools, and eliminate support for abstinence-only education
c. Eliminate state-level HIV criminalization laws

Are you excited yet? Ready, set, go vote before this Friday, May 22! (https://nhas.uservoice.com)

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)

White Paper Shows Key Gaps in the Affordable Care Act and Opportunities for the Ryan White Program to Provide Healthcare for Women with HIV

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Download the full report (PDF)

Download a one-page summary of the report (PDF)

FOR IMMEDIATE RELEASE

Contacts:

Nerissa Irizarry, Positive Women’s Network-USA – nerissa.pwnusa@gmail.com
Melanie Medalle, SisterLove, Inc. – mmedalle@sisterlove.org
Ariel Tazkargy, National Women’s Health Network – atazkargy@nwhn.org

March 10, 2015 – March 10th marks the observance of National Women and Girls HIV/AIDS Awareness Day – an occasion to recognize the impact of HIV on the lives of women and girls. On this National Women and Girls HIV/AIDS Awareness Day, three organizations working to achieve health justice for women are illuminating the healthcare coverage disparities that impact women living with HIV, and proposing solutions for HIV and health justice advocates.

Positive Women’s Network-USA (PWN-USA), National Women’s Health Network, and SisterLove, Inc., today released a collaborative policy paper examining the unique healthcare needs of women living with HIV, highlighting key opportunities as well as gaps in the Affordable Care Act (ACA), and underlining the importance of the Ryan White Program in the current arrangement of public healthcare for people living with HIV.

“Although the first-ever National HIV/AIDS Strategy, released in 2010, underscored the importance of ensuring access to care for people with HIV, women with HIV continue to face barriers to care which must be addressed,” says Naina Khanna, PWN-USA Executive Director.

In this extremely unsettled post-Affordable Care Act environment, thousands of low-income women and communities of color affected by HIV still lack sufficient health coverage to meet physical and mental health needs, including HIV-related healthcare and life-saving medications. As a result, many people living with HIV rely on critical gap-filling funds administered through Ryan White, for HIV care, medication, and support services. But for women with HIV, access to care through Ryan White is facing a massive threat: elimination of women-specific services if Ryan White Part D is consolidated into Part C, as proposed by the President’s 2016 budget.

We are releasing this policy paper for advocates to use in efforts to promote the needs of women living with HIV in all federal and state-level healthcare coverage discussions. “The unique needs of women affected by HIV, especially in the Deep South, require a greater amount of attention and priority in the implementation of the ACA and the preservation of the Ryan White CARE Act,” says Dazon Dixon Diallo, Executive Director/CEO of SisterLove, Inc. “We will never get to the end of this epidemic without achieving better health outcomes and lower incidence of HIV disease in women in this country.”

We encourage advocates to use the information presented as an entry point for discussions with policymakers, and to use and adapt the recommendations to advance policy goals.

Read and download the full report: Ryan White and the Affordable Care Act: Advocating for Public Healthcare for Women Living with HIV (PDF)

Read and download a one-page summary of the report (PDF)

 

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

Contact: Olivia Ford – oford.pwnusa@gmail.com – 347.553.5174

July 16, 2014 – Last Friday, University of California – San Francisco (UCSF) researchers released study results that add to the growing body of literature surrounding healing from trauma as an essential component of HIV care for women. An expressive therapy group intervention originally developed by San Francisco’s Medea Project for incarcerated women has shown highly promising effects on the health and well-being of women living with HIV.

Although significant medical advances have been made in HIV treatment, health outcomes are startlingly poor for US women with HIV, in part due to high rates of stigma, depression, trauma and post-traumatic stress disorder. Even for women who are connected to HIV care and treatment, violence and trauma are a profound barrier to safe, healthy lives. “Over 90 percent of our patients are on effective antiretroviral therapy — far higher than the national rates — but far too many are dying from suicide, addiction, and violence,” says Dr. Edward Machtinger, professor of medicine and director of UCSF’s Women’s HIV Program, in a recent statement. “Depression, addiction, and especially trauma are very common and often devastating for women living with HIV, but are not being effectively addressed by most clinics.”

The UCSF study showed reduced social isolation, and improved emotional well-being, self efficacy, and mental health, for women with HIV through expressive therapy grounded in performance, storytelling, and peer-based support.  Notably, 50% of study participants reported leaving or avoiding “harmful or unsupportive relationships” – a key finding considering that women living with HIV are twice as likely to be survivors of intimate partner violence than the general population of US women, according to a 2012 UCSF study.

Positive Women’s Network – USA (PWN-USA), the nation’s premier voice of women living with HIV and a partner of UCSF’s Women’s HIV Program, celebrates the success of Medea Project’s disclosure intervention for women living with HIV. These study results add proof to what HIV advocates have noted for years, and clinical studies have begun to document: that addressing and healing effects of trauma may be key to improving health for women with HIV.

“President Obama’s Interagency Working Group on HIV, Violence Against Women and Girls and Gender-Related Health Disparities demonstrates a commitment to addressing this issue to improve the health and lives of women with HIV in the US,” says Naina Khanna, executive director of PWN-USA. “We applaud this research and hope these and similar findings on trauma-informed interventions will inform and transform models of care for women with HIV.”

Read more about this study and trauma-informed care from women living with HIV:

Jailhouse Theater Program Helps Women Disclose HIV Status (San Francisco Chronicle)

An Expressive Therapy Group Disclosure Intervention for Women Living With HIV Improves Social Support, Self-efficacy, and the Safety and Quality of Relationships: A Qualitative Analysis (Journal of the Association of Nurses in AIDS Care – Full text of study)

“Expressive Therapy” Intervention Assists Women Living with HIV (UCSF statement)

PWN-USA Resources on Violence Against Women

Healing Trauma and Ending Violence Against Women Are Crucial for Improving HIV Health Outcomes:  Moving From Recommendations to Action (PWN-USA fact sheet – PDF)

PWN-USA Applauds Release of Daily HIV Prevention Pill Guidelines as Move Toward Sexual and Reproductive Rights

May 15, 2014 — Yesterday, the U.S. Centers for Disease Control and Prevention (CDC) took a major step towards advancing sexual and reproductive health, rights, and choice, by releasing guidelines for the use of a daily HIV prevention pill: Truvada as pre-exposure prophylaxis (PrEP) for those who may be at risk for acquiring HIV.

Prevention justice for women means access to a range of HIV prevention options and tools which put the choice to reduce risk directly in the hands of women and which expand sexual pleasure, sexual health, and reproductive and family planning choices for people living with and vulnerable to acquiring HIV. PrEP provides an opportunity to reduce the impact of social inequities and inequitable power dynamics within relationships.

These new CDC guidelines are important for women: Not only are these the first such national guidelines issued anywhere for PrEP use, but according to a study by Gilead, the maker of the medication, nearly half of PrEP prescriptions in the U.S. to date have been issued to women.

Anna Forbes, who staffs the U.S. Women and PrEP Working Group (a national advocacy coalition of women’s health advocates, health care providers and researchers) commented: “Those women’s PrEP prescriptions are being written mostly by nurse practitioners and infectious disease specialists. Women can’t always insist that their male partners use condoms. Education about PrEP and this CDC guidance will enable health care providers to offer PrEP to women looking for another HIV prevention option — one that they can control. That’s a step forward for women.”

An article published earlier this year in the journal Women’s Health Issues, and written by Forbes and several PWN-USA leaders, discusses the importance of considering the lived experiences of women with HIV to maximize the effectiveness of emerging HIV prevention technologies.

The new CDC guidelines state that the use of Truvada as pre-exposure prophylaxis (PrEP) is recommended for consideration for HIV-negative individuals who are:

  • in an ongoing sexual relationship with a partner living with HIV
  • gay or bisexual men who have had condomless sex or been diagnosed with an STI in the past six months, and who are not in a mutually monogamous relationship with a partner who recently tested HIV negative
  • heterosexual men or women who do not always use condoms when having sex with partners known to be at risk for HIV (e.g., injection drug users or bisexual male partners of unknown HIV status) and who are not in a mutually monogamous relationship with a partner who recently tested HIV negative
  • have within the past six months injected drugs and shared equipment or been in a treatment program for injection drug use

The AIDS Vaccine Advocacy Coalition (AVAC) is hosting a webinar on Tuesday, May 20, at 10am ET, where representatives of the CDC will discuss these new guidelines. Register here for the webinar

Read more about PWN-USA’s perspective on prevention justice and the role of biomedical prevention in our 2012 publication: Bringing Gender Justice to HIV Prevention: A Blueprint for Women’s Action

Healing in Order to Treat: Addressing Violence and Trauma to Improve Health Outcomes for Women With HIV

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 510.333.4262

New York City, March 10, 2014 – Today, National Women and Girls HIV/AIDS Awareness Day, Positive Women’s Network – United States of America (PWN-USA) is Sharing Knowledge and Taking Action to break the link between violence, trauma and HIV among women in our communities, in collaboration with federal partners. Yet last week, President Barack Obama proposed a 2015 budget that will eliminate future support for women-focused HIV services funded by Part D of the Ryan White Treatment Extension Act — with no assurances that the remaining parts of Ryan White will pick up the slack. This change is being proposed despite data from the U.S. Centers for Disease Control and Prevention (CDC)’s HIV care continuum, which shows that only 41% of women living with HIV are retained in medical care.

A statement from the Health Resources and Services Administration’s HIV/AIDS Bureau cites success in preventing perinatal HIV transmission as key to the decision to eliminate Part D. “The Part D program is working well at keeping women healthy, so they gut it?” asks Pat Migliore, founder of BABES Network in Seattle, WA. “It just doesn’t make sense.”

Last week’s news that a second infant born with HIV has become HIV negative through aggressive treatment soon after birth recalls the story of the first “cured baby,” whose HIV remission was widely reported in early 2013. Both discoveries were made possible by gaps in their mothers’ retention in care, with unreported and potentially profound consequences to those women. The puzzle of keeping women connected to quality care is far from solved.

A significant piece of that puzzle may lie in the epidemic of violence and trauma, which impacts women with HIV at alarming rates. Women with HIV experience intimate partner violence at more twice the rate of the general population of U.S. women, and post-traumatic stress disorder at more than 5 times the national rate, according to data released in 2012. Further, women with HIV, including transgender women, who reported recent trauma were 4 times more likely to face HIV treatment challenges than those who did not. These numbers indicate a potential connection between unaddressed trauma and gaps in the care continuum, which illustrate failure to provide high-quality care. “Failure to systemically address the ongoing effects of lifetime trauma and violence may be the missing ingredient in improving care for women living with HIV,” says Gina Brown, a New Orleans-based PWN-USA member.

The Interagency Federal Working Group on the Intersection of HIV/AIDS, Violence Against Women and Girls, and Gender-Related Health Disparities was formed by President Obama to address this connection. In February, the working group launched a set of promising recommendations for breaking the cycle of trauma and HIV among women. Among the recommendations: additional research into the prevalence of violence and trauma, co-screening for intimate partner violence and HIV, and development and dissemination of trauma-informed care and service models for women with HIV.

“Medication is treatment; trauma-informed work is about healing,” says Linda H. Scruggs, Director of Ribbon Consulting Group and a founding member of PWN-USA. “We need to heal in order to treat.” Advocates believe that federal support for these powerful recommendations coupled with the proposed elimination of Part D, a federal source of women-focused HIV services, sends a dangerously conflicting message.

“Despite efforts to eliminate funding, U.S. women with HIV continue to face poor health outcomes, including higher rates of death, in part because of the effects of lifetime trauma and ongoing violence,” says Vanessa Johnson, creator of Common Threads, an innovative project that addresses trauma and promotes economic empowerment for women with HIV. “It’s more urgent than ever that we address these intersections as outlined in the working group’s report.”

PWN-USA is committed to working with community stakeholders and partners across federal agencies to ensure that these recommendations grow into effective, comprehensive programmatic and policy changes. PWN-USA also encourages women and advocates to use these recommendations as a tool in talking to peers, local clinics, AIDS service organizations, providers, policymakers and local media about the profound impact of violence prevention and trauma-informed care on the health and lives of women with HIV across the U.S.

PWN-USA Releases Groundbreaking Report on Sexual and Reproductive Health and Rights for US WLHIV

PWN-USA Releases Groundbreaking Report on Sexual and Reproductive Health and Rights for US WLHIV 

To read full report click here

Despite significant advances in treatment and reduction in infectiousness, people living with HIV continue to face discrimination in the health care system, justice system, public and private sectors; stigmatizing portrayals in the media; and high rates of prejudice among the general population. Laws, policies and practice have not changed to keep up with current science; many laws remain on the books from the early days of the epidemic when understanding of HIV transmission routes was scarce.

Nowhere is this more apparent than in the case of women’s sexual and reproductive health and rights (SRHR), an expansive topic which lends itself to a plethora of exploratory subject areas related to desires, behaviors and perceptions.

In many ways this topic is the narrative to women’s lives; it encompasses puberty and sexual development, identity, body image, and self-esteem, romantic and sexual desires and relationships, reproductive health, fertility desires, and life during and after menopause. Women’s sexual and reproductive health and rights go beyond just individual experiences, and are grounded in a structural context. Specifically, SRHR are shaped by and simultaneously define cultural norms and expectations, governing laws and policy, and social constructs.

To better understand the ways in which women living with HIV experience their own sexuality, relationships, and reproductive desires and intentions, within this cultural, political and social context, Positive Women’s Network – United States of America, a national membership body of women living with HIV, created a research and analysis project designed and implemented entirely by women living with HIV.  UNSPOKEN: Sexuality, Romance, and Reproductive Freedom for Women Living with HIV in the United States articulates the findings of that project and details recommendations for further research, advocacy, and action.

This framework document – written, researched, and edited entirely by women living with HIV – outlines a review of existing policies that may impact the SRHR of women living with HIV; a review of the literature; and findings from a national survey conducted among HIV-positive women in the US during the summer of 2013. The authors of UNSPOKEN believe that understanding the actual lived experiences of sexual and reproductive rights for women living with HIV, in context, offers tremendous opportunity to increase engagement in care, to achieve better individual and public health, and, most importantly, to ensure that women living with HIV are afforded the opportunity to live a life of dignity, free of stigma, discrimination, and violence.