On #NWGHAAD, PWNers Assert and Celebrate #BodilyAutonomy

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March 16, 2017: For National Women and Girls HIV/AIDS Awareness Day (#NWGHAAD), PWNers from coast to coast hosted and participated in events, in person and online, raising awareness and educating our communities about HIV and its impact on women and girls and asserting the bodily autonomy of women living with HIV.

From the Women Living Conference in Atlanta (PWNer Shyronn Jones shares her experience there in this blog) to a special event focused on the theme of bodily autonomy in Philadelphia, PWN-USA members and regional chapters took advantage of the occasion to speak out, share our stories and advocate for our rights. You can see the events PWN-USA members and chapters hosted, participated in and/or presented at here. And check out the slideshow above! Continue reading “On #NWGHAAD, PWNers Assert and Celebrate #BodilyAutonomy”

On #NWGHAAD, We Celebrate #BodilyAutonomy

March 10, 2017: Today is National Women & Girls HIV Awareness Day. In honor of the approximately 300,000 women living with HIV in the United States, please join Positive Women’s Network – USA in asserting and celebrating the bodily autonomy of all women and girls living with HIV, including women of trans experience.

NWGHAAD 17 graphic v2-01Yesterday, we presented Bodily Autonomy: A Framework to Guide Our Future in a special webinar (watch the recording here!) Today at 12 PM EST/9 AM PST, we continue the conversation on Twitter using the hashtags #NWGHAAD and #BodilyAutonomy with special guests from HIVE, SisterSong, Desiree Alliance, The Well Project, Positively Trans, Arianna’s Center and Prevention Access Campaign. We invite you to join the conversation online! You can also access our complete #NWGHAAD #BodilyAutonomy social media toolkit here, complete with sample social media posts and shareable graphics.

The Bodily Autonomy Framework is available here (Download the printer-friendly PDF version of this framework here.)

Women and girls living with HIV across the U.S.: Today, and every day, we honor you. Allies: Thank you for your continued support and commitment to upholding the rights of women living with HIV.

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.

On Third Day of Action to End Violence Against Women Living with HIV, PWN-USA Demands End to Criminalization & Other Forms of Structural Violence

doa-soc-media-graphic
OCTOBER 21: Women with HIV simultaneously live with the effects of trauma resulting from interpersonal, community, and institutional violence. Studies have shown that the lifelong and compounding effects of these different forms of violence may have consequences far deadlier than the virus itself. October 23, Positive Women’s Network – USA (PWN-USA), along with dozens of endorsing organizations, will observe our third Day of Action to End Violence Against Women Living with HIV, releasing a factsheet highlighting the many forms of violence impacting women living with HIV and their communities, with a special focus on criminalization, discriminatory law enforcement practices and other forms of

teresa-w-proclamation-for-doa
Teresa Sullivan, PWN-USA Philadelphia Senior Member, displays city proclamation

structural violence, and to offer solutions and ways that government, institutions and organizations can help prevent and mitigate violence and trauma. We will also be hosting a Twitter chat Monday, Oct. 24, at 2 PM ET/11 AM PT to look at the promise of trauma-informed care for women living with HIV as a means to healing the trauma that is far too often a barrier to retention in care (follow the hashtags #pwnspeaks and #EndVAWHIV). Community events are also being held in various cities, and members in Philadelphia and Houston secured proclamations from their cities declaring October 23 the Day of Action to End Violence Against Women Living with HIV.

Laws criminalizing people living with HIV (PLHIV) disproportionately affect over-policed communities, including women of color (who make up 80% of the epidemic among women) and women of trans* experience. Harassment and brutality by police and law enforcement create hostile environments that perpetuate trauma in communities of color and other communities significantly impacted by HIV. Consequently, for the 2016 National Day of Action to End Violence Against Women Living with HIV, PWN-USA demands:
  • Repeal and reform of laws criminalizing HIV exposure, non-disclosure and transmission
  • An end to law enforcement practices that target communities disproportionately impacted by HIV, including people of trans and gender nonconforming experience (TGNC), sex workers, people who use drugs, immigrants, people who are unstably housed, people with mental illness, and communities of color
  • An end to stigmatizing and discriminatory interactions, methods of surveillance and brutalization of PLHIV and communities impacted by HIV at the hands of law enforcement
  • Elimination of barriers to safe, stable, and meaningful reintegration into the community for those returning home from jail and prison, those with criminal convictions, and the loved ones who support them.
PWN-USA called for the first Day of Action in 2014 in response to several high-profile murders of women following disclosure of their HIV status. Last year, community events were held in at least 18 cities, as well as a Twitter chat with 228 participants that reached 1.6 million people. 18 blog posts and statements were submitted by individuals and organizations in honor of the Day of Action. PWN-USA hopes this year’s day of action will continue to raise awareness, put forward solutions and mobilize advocates to push for meaningful change to end structural and institutional violence in the form of criminalization of our communities.
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Young Women Living with HIV Deserve Support and Leadership Roles in HIV Community

PWN-USA Statement for National Youth HIV/AIDS Awareness Day

APRIL 8, 2016: Young women living with HIV have unique needs that often go unaddressed. HIV stigma, discrimination, ageism, complexities of treatment regimens, and economic challenges present a unique set of barriers to care and service delivery that can result in isolation, depression, and poor health outcomes. Navigating disclosure, dating, sex, employment, education, and parenting may be entirely different for young people living with HIV than for older adults. For those born with HIV, the realities of being a long-term survivor at age 20, 30, or 35 may have particular physical and psychological implications. In the United States, mass incarceration, community violence, and growing economic inequality may be affecting young generations impacted by HIV in unprecedented ways.

“When we talk about the needs of women, social support is critically important to our overall wellbeing,” says Grissel Granados, a young woman born with HIV who currently works as an HIV and STI testing coordinator in Los Angeles, and who released a documentary last year, We’re Still Here, exploring the complexities and challenges of growing up with an HIV diagnosis. “Even as we have seen funding cut for women’s support groups, communities of women have found ways to come together anyway. However, for young women living with HIV, it is much harder for them to create community with other young women–being that they are so few in numbers in any given city, young women don’t even know each other. There are not enough young women participating in larger HIV spaces because their needs are not being addressed and because they are not seeing themselves. As a larger community of HIV advocates, we need to make sure that we are intentional about including young women and supporting spaces that can bring young women together, even if it’s just to build a network for social support.”

In honor of this year’s National Youth HIV/AIDS Awareness Day (NYHAAD), Positive Women’s Network – USA (PWN-USA) calls for a national commitment to addressing the needs and upholding the rights of young people living with and vulnerable to HIV. Advocates for Youth has just released a NYHAAD Bill of Rights, proclaiming:

1. The right to live free from oppression,
2. The right to education,
3. The right to prevention,
4. The right to care and treatment, and
5. The right to live free from criminalization, discrimination and stigma.

“It’s an aspiration of mine to see something like this NYHAAD Bill of Rights in full motion because our young people are worthy to walk in this world with all provided tools, absolute support and love,” says Tranisha Arzah, a PWN-USA Board Member born with HIV who works as a peer advocate in Seattle. “If we demand these rights, with the full support of the larger community, young people can not only thrive but lead the way toward a future where barriers to prevention, treatment and care like stigma and discrimination no longer exist.”

PWN-USA wholeheartedly endorses this bill of rights. As we move well into the fourth decade of the HIV epidemic, we further call on the HIV community to endorse and actively promote leadership by young people living with HIV. We believe that if this epidemic ever sees its end, it will be because of effective, supportive and strategic intergenerational leadership building on the lessons of the past while looking toward a radical and visionary future.

PWN-USA is fully committed to empowering and supporting young women living with HIV to organize and strategize; to demanding and upholding their rights to healthcare, including sexual and reproductive care, that works for them and meets their unique needs; and to ensuring their meaningful participation in decision-making spaces.

We urge young women to present at and/or attend 2016 SPEAK UP! A National Leadership Summit for Women Living with HIV, where they will be welcomed, embraced, and where they can educate other women on their needs, concerns and vision.

Please join us on Twitter today at 4 PM ET/1 PM PT for a dynamic Twitter chat with Advocates for Youth about Article 5 of the NYHAAD Bill of Rights: The Right to Live Free from Criminalization, Discrimination and Stigma. Follow the hashtag #NYHAADChat and join the conversation. See you online!

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

The Epidemic Among Black Women Requires More than Rhetoric


PWN-USA Statement for National Black HIV Awareness Day

by Vanessa Johnson and Waheedah Shabazz-El

Black Americans have endured an exceptionally brutal history which complicates our present and challenges our future. Torn from our native land–the continent that gave birth to humankind–we have been systematically dehumanized to serve as chattel in a foreign land. Even now, the United States offers Black Americans citizenship only at a substandard quality of life and without an opportunity for reparations and healing. Given this history, and our understanding of HIV as an epidemic that thrives on inequality and injustice, an HIV epidemic among Black Americans should hardly come as an unexpected surprise.

National Black HIV/AIDS Awareness Day (NBHAAD) is anything but a celebration. It is a grim reminder of how far we still have to go, and how hard we still have to fight. Black lives will matter when our nation confronts and conquers the hypocrisy of those who claim to cherish all life yet place greater value on fetuses than on living, breathing Black children and adults.

Throughout this epidemic, HIV has shined a bright spotlight on the wide range of injustices confronting Black Americans: intergenerational poverty, mass incarceration, institutionalized racism, inadequate access to health care, inferior educational opportunities, disproportionate targeting by police, a racist criminal justice system, and more. If there is anything that the HIV community has universally accepted, it is the understanding that HIV is more than just a medical condition. The federal response to this epidemic serves as a very window into the soul of one of the richest nations on earth — a nation which continually leaves Black Americans in its wake, drowning in the torrents of a largely preventable disease. Merely half a century after the end of segregation, in a nation whose economic basis is founded on Jim Crow laws and which turns a blind eye to the systemic injustices facing people of color, we cannot feign surprise that there continues to be an epidemic of HIV among Black Americans and that Black people living with HIV face worse health outcomes on average.

Although some progress has been made, Black Americans are still fighting for access to the most fundamental human rights – including water, food, employment, education, and the right to vote. We continue to be locked out of meaningful civic participation, fair representation and decision-making from the local level to the highest halls of federal government.

This rings particularly true for Black American women, whose plight and leadership in this epidemic continue to be minimized. Despite the advances made to reduce new infections, Black American women still acquire HIV at an alarming rate–representing 60% of new infections among women–and remain the majority of women living with HIV in this country. Although Black women comprise nearly two-third of the domestic HIV epidemic among women, Black women living with HIV are still not a priority in the newly-released National HIV/AIDS Strategy (NHAS 2020).

As an advocacy organization, Positive Women’s Network-USA (PWN-USA), the premier voice for women living with HIV in the United States, will not stand idly by in silence while women of African descent continue to bear the brunt of this disease and policymakers’ indifference to its effects on our community. We demand that our government invest in effective HIV prevention for Black women, as well as in women-centered, whole-person, universal health care that addresses the barriers to engagement and retention in care for women with HIV. Medicalization of HIV will continue to fail in addressing the needs of women living with and vulnerable to HIV when they do not have adequate access to basic resources to stay healthy.

The HIV epidemic in this country will end when America commits to the underlying conditions which enable HIV to thrive, such as racism and poverty. We demand a laser focus on upholding the full health, rights, and dignity of Black women living with HIV over the next five years of the National HIV/AIDS Strategy’s implementation.

Securing the Future of Women-Centered Care

Findings of a Community-Based Research Project

“What would improve your ability to stay in care?” That is the fundamental question women with HIV sought to answer in a community-based participatory research project. 14 women living with HIV (WLHIV) from across the US surveyed other WLHIV in their communities to assess what is and is not working well for women in the context of Affordable Care Act implementation, changes to Ryan White service delivery and the updated National HIV/AIDS Strategy.

“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, PWN-USA Board Co-Parliamentarian and one of the community-based researchers on the project.

In honor of National Women and Girls HIV/AIDS Awareness Day, we invite you to join Positive Women’s Network – USA for a webinar presenting the key findings of this research project: Securing the Future of Women-Centered Care. Discussion will focus on implications for the future of the Ryan White program.

Please join us Thursday, March 10, 2016, from 1-2:30 PM ET/10-11:30 AM PTRegister for the webinar today!

Then, head to Twitter at 3 PM ET to continue the conversation with our partners The Well Project and Greater Than AIDS using the hashtags #NWGHAAD and #PWNspeaks!

NWGHAAD Twitter chat promo v2
 

Reproductive Rights Must Be Part of Our Battle

Positive Women’s Network – USA Statement on
World AIDS Day 2015

Dec 1, 2015 – Just four days ago, an atrocious act of terror was perpetrated against Planned Parenthood, an essential source of healthcare for working and low-income women, men and young people in the US. As women living with HIV who have benefited from the healthcare and education services provided by Planned Parenthood, we condemn this brutal violence. We grieve for the loved ones of Jennifer Markosky, Ke’Arre Stewart and Garrett Swasey. And we mourn the devastation of women’s sense of safety, bodily autonomy, and threats to well-being for healthcare providers committed to delivering woman-centered care.

As women living with HIV, many of us have used and still depend on the vital health care services Planned Parenthood provides, including access to HIV testing, screening for sexually transmitted infections, pap smears, and the means to determine if, when and how we have children. We will continue to fight for these services.

Make no mistake. Attacks on Planned Parenthood are assaults on women’s rights to health, dignity, and self-determination.

While brutal violence like the recent incident in Colorado is typically met with condemnation by leaders of all political stripes, a large number of elected officials have waged a relentless war on Planned Parenthood specifically and women’s health more generally in recent years. The growing movement to deny essential healthcare to working and low-income women—accompanied by simultaneous and persistent efforts to decimate programs critical for working and low-income families – including food stamps, Medicaid, and paid parental leave — marks a deep disdain for women. These leaders would not only deny us the right to make decisions about whether, when and under which circumstances to have children – they also seek to deny the support that makes having and sustaining families a feasible reality.

A new study shows that states with higher funding for social services have much lower rates of HIV incidence and of AIDS deaths—signaling that, if the U.S. is serious about “getting to zero,” we have to be willing to challenge the reactionary idea that the working classes and the poor fare better when forced to “pull themselves up by their bootstraps.”

We must also be willing to challenge the rhetoric espoused by those who call themselves “pro-life” while tacitly or explicitly encouraging hatred, dehumanization of women, and violence. As women living with HIV, we know all too well the power of language to affirm or to dehumanize; to show respect or to stigmatize and criminalize. Hostility toward sex education, sexuality and reproductive rights is detrimental to us all—yet is evidenced by the fact that our government released a National HIV/AIDS Strategy in which the word “reproductive” does not even appear.

Women living with HIV—like all women—deserve access to affordable healthcare including the full spectrum of sexual and reproductive services–and yes, abortion and contraception services–that meet all of our health and family planning needs. Since the beginning of the epidemic, the sexual and reproductive needs and desires of women living with HIV have been ignored and dismissed by those in power. On this World AIDS Day 2015, we must take a stand to assert that women with HIV deserve not only life-saving medications, but the right to self-determination—and the full spectrum of healthcare services and options to make that right a reality.

Help Make Trauma-Informed Care the Next Legacy of the Ryan White HIV/AIDS Program

FOR IMMEDIATE RELEASE

Contact: Jennie Smith Camejo, jennie.sc.pwnusa@gmail.com / 347.553.5174

October 19, 2015 – Want trauma-informed care to be the next legacy of the Ryan White Program? So do we! Show your organization’s support by signing on now to these recommendations for specific action on the trauma-related objectives in the new National HIV/AIDS Strategy.

Today – during Intimate Partner Violence Awareness Month, and just in time for the National Day of Action to End Violence Against Women Living with HIV – Positive Women’s Network – USA (PWN-USA) joined with the Women’s HIV Program (WHP) at the University of California, San Francisco (UCSF) to submit a letter to the Health Resources and Services Administration HIV/AIDS Bureau (HRSA HAB), administrators of the Ryan White Program, to recommend key implementation steps for the National HIV/AIDS Strategy (“the Strategy”). (Read the full text of PWN-USA and WHP’s letter to HRSA HAB here.)

There is a crisis of unaddressed trauma among women living with HIV,” says PWN-USA’s Executive Director Naina Khanna. A growing body of research shows that women living with HIV bear an overwhelmingly high burden of intimate-partner violence (IPV) and post-traumatic stress disorder (PTSD), which negatively impacts the quality of their lives as well as their health outcomes across the HIV Care Continuum.

“In a forthcoming study looking at deaths in our program over the past decade, only 16% were due to complications of HIV/AIDS,” adds Edward L. Machtinger, MD, director of UCSF’s WHP. “The majority of the rest of these deaths were due  to the effects of trauma: directly though murder; and indirectly through substance abuse, depression, isolation, and illnesses linked to trauma like obesity, diabetes, heart, lung, and liver disease.”

When the newest version of the Strategy was released in July, it contained powerful and long-fought-for commitments to explore trauma-informed approaches to women’s HIV care. A plan for putting the full commitments of the Strategy into action is expected this December. Each federal agency responsible for carrying out goals of the Strategy is currently working on its own plan of action.

To help make sure HRSA HAB’s action plan includes critical steps to making trauma-informed care and services a reality, for women and all the more than 500,000 people living with HIV in the US engaged in Ryan White-funded services, PWN-USA and WHP’s letter to HRSA HAB outlines specific requests for action on this crucial health concern:

  1. Provide training for case managers, social workers, nurses, administrators, doctors, and other clinic professionals at Ryan White service delivery sites to use trauma-informed approaches with clients and among staff  
  2. Require Ryan White programs to collect and report data about rates of IPV and PTSD symptoms – as well as more accurate data about rates of substance use, depression, stigma, and social isolation
  3. Facilitate implementation and evaluation projects of trauma-informed primary care in at least 6 primary care clinics serving women, including transgender women, living with HIV
  4. Integrate evidence-based responses to PTSD into existing funded clinical services, including therapy, psychiatry, medication adherence, and substance abuse treatment
  5. Encourage collaborations between community-based IPV organizations and trauma recovery centers, and HIV and primary care clinics and AIDS service organizations
  6. Look for demonstrated commitment to the above factors when assessing grantee applications

Show your organization’s support for these recommendations by signing on to this form!

There are many evidence-based interventions to heal from trauma, and it is important to know that treatments for substance abuse and depression are far more effective if trauma is concurrently treated,” comments Dr. Machtinger. “Ryan White clinics need to be educated, supported, and resourced to integrate these interventions into care, and then held accountable for preventable trauma-related deaths.”

Earlier this year, PWN-USA and WHP teamed with provider-researchers from UCSF to publish a peer-reviewed article to help providers incorporate trauma-informed care into clinical practice. PWN-USA and WHP are far from alone in calling for trauma-informed approaches, nor would HRSA HAB be alone on the federal stage in implementing them. Last year, the US Substance Abuse and Mental Health Services Administration (SAMHSA) released a guide for implementing trauma-informed care; trauma-informed methods are also being used by providers at the US Department of Veterans Affairs with clients who are homeless and who have survived wars. And just last month, the Federal Partners Committee on Women and Trauma convened the Building a Trauma-Informed Nation Summit, which brought together community leaders (including Naina Khanna of PWN-USA) from across sectors to discuss strategies for securing trauma-informed practice within as well as outside the realm of health services.

HRSA HAB is in a unique and optimal position to serve as a beacon in this movement to expand trauma awareness and healing, and to profoundly improve the lives of individuals and communities impacted by HIV,” says Khanna. HRSA HAB can make this possible by creating a bold action plan to implement trauma-informed practice, with measurable goals and outcomes. The success of this National HIV/AIDS Strategy is predicated on successful adherence to treatment and engagement in care. For many people living with HIV, that will not be possible without addressing the trauma in their lives.  So many of the deaths today are preventable, and any preventable trauma-related death in a Ryan White program will increasingly come to be seen as the result of inaction.”

In the words of the first Strategy’s Implementation Plan, from 2010: “The National HIV/AIDS Strategy is just a collection of words on paper, unless it provides a strategic vision for the country that leads to action.” In observing this year’s Day of Action to End Violence Against Women with HIV this week, we urge community members to share this statement, spread the word, and keep your eyes on PWN-USA’s website. Organizations can also show their agreement with PWN-USA’s recommendations to HRSA by signing onto the form below.

HRSA is at the helm of a life-expanding source of high-quality care for communities living with HIV that was itself a pioneer in the field of comprehensive, community responsive health services. We look forward to collaborating with HRSA to help make trauma-informed care the Ryan White HIV/AIDS Program’s next great innovation.

To sign your organization on to this statement, click this link or use the form below.