Positively Trans Meets at White House, Advocates for Inclusion and Leadership of Trans* Community in HIV Policy

KIMG0173
Tiommi (right) and Arianna Lint (left) at White House, Feb. 10, 2016

by Tiommi Jenae Luckett

Going to the White House was truly something I never had on my radar to do for personal reasons. However, that was years ago when I felt that way. So fast forward and I was invited to participate in a roundtable discussion with members of the Office of National AIDS Policy (ONAP), the Health Resources and Services Administration (HRSA), Centers for Disease Control (CDC) and representatives from other agencies, alongside several phenomenal trans women and trans men who are recognized as experts.

The discussion started off with a synopsis of the things these lead organizations need to improve on when servicing the trans population. We who are of trans experience are already privy to this information and we voiced our frustrations about the inconclusive and nonexistent data of the trans community living with HIV.

We had to let these agencies know that the trans community is not being counted because trans women are seen as men who have sex with men (MSM) and trans men are counted as women. That is problematic, because these ASOs and CBOs that claim to provide services for transgender people seldom do. We also had to let them know that the trans women in attendance were more than beautiful women; we are also hardworking, dedicated, fierce, intelligent and persistent advocates who demand a place at the table. In essence, nothing about us without us. We made it blatantly clear that funds intended to bridge the gap in disparities suffered by the trans community living with HIV are not being used in that manner, but more for the leadership building of Black MSMs.

I know that we got our points across and were heard. As I told Douglas Brooks, Director of ONAP, that I thought my meeting with members of HRSA last year in Arkansas was a step in rectifying the situation, yet as a trans woman living with HIV in Arkansas, whatever surveillance measures are being used are not counting me. That is a huge problem for me. What we members of Positively Trans who were in attendance actually did was to share the preliminary results of our survey of trans* and gender-non-conforming people living with HIV in the South, since the southern region is often neglected from funding opportunities.

KIMG0172

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.

Key Constituencies Impacted by the HIV Epidemic Hold Counter Conference to Raise Issues Inadequately Addressed by National HIV Prevention Conference & National HIV/AIDS Strategy

**MEDIA ADVISORY FOR MON. 12/7 & TUES. 12/8**

Contact: Suraj Madoori,  708-590-9806, smadoori@aidschicago.org or Jennie Smith-Camejo, 347-553-5174, jsmithcamejo@pwn-usa.org

ATLANTA: This week, as representatives of multiple federal agencies and organizations working in HIV prevention and care convene in Atlanta for the 2015 National HIV Prevention Conference (NHPC), advocates and activists representing key constituencies disproportionately impacted by the HIV epidemic will be gathering blocks away to highlight issues that are largely ignored by the NHPC. Among the issues that will be addressed at the People’s Mobilization on the National HIV/AIDS Strategy (also known as the “Counter Conference”) are the intersection of criminalization of HIV with mass incarceration and the War on Drugs; lack of integration of reproductive justice and sexual health; prevention funding, housing and healthcare access for people living with HIV in the South; increasing employment opportunities for people living with HIV, and upholding human rights for transgender people, immigrants and sex workers.

WHAT: People’s Mobilization on the National HIV/AIDS Strategy: A Counter Conference to the NHPC focused on issues facing communities inadequately addressed by the National HIV/AIDS Strategy & Federal Action Plan
WHEN: Monday, 12/7, 10 AM-4 PM; Tuesday, 12/8, 10 AM-4 PM
WHERE: National Center for Civil & Human Rights, 100 Ivan Allen Blvd. NW, Atlanta
Possible press conference to be announced.

“The LGBT Institute shines a spotlight on issues that don’t often get a platform,” says Ryan Roemerman, Executive Director of the LGBT Institute at the National Center for Civil and Human Rights, which is hosting the Counter Conference. “Our hope is that we can help organizers amplify their message that a strong focus on intersectionality, human rights, and social justice are necessary when creating and implementing strategies to end the HIV/AIDS epidemic.”

The NHPC and the Counter Conference come just days after the Obama Administration’s Office of National AIDS Policy (ONAP) released its highly anticipated Federal Action Plan to implement the National HIV/AIDS Strategy 2020 (NHAS) unveiled this July. While the Action Plan does show some progress in areas long championed by advocates, including discrimination, data collection for transgender women and incorporating trauma-informed care in healthcare services for people living with HIV, advocates say it does not go far enough even in these areas, and falls woefully short in others. For example, sex workers—a population extremely vulnerable to HIV—are mentioned nowhere in the Action Plan. There is still no mandate for reproductive and sexual healthcare services to be provided to people living with HIV in primary care settings. Testing, prevention and treatment for immigrants appear to be addressed only in the context of detention centers. And indicators for addressing homelessness among people living with HIV are so limited as to miss those unstably housed. Of great concern is that the Action Plan contains no clear mechanisms for the involvement or leadership of people living with HIV in the monitoring and evaluation of NHAS. Advocates have also critiqued the Strategy’s sex-negativity and ONAP’s failure to engage with the community in the process of developing the Strategy (see links below).

The Counter Conference seeks to include people living with HIV in the national conversation around prevention happening at the NPHC–the conference, at about $500 per person, is far too expensive for many to attend, especially considering the vast majority of people living with HIV live at or below the poverty level. “The National HIV/AIDS Strategy’s success rests on universal viral suppression, because that will drastically reduce the rate of new HIV acquisitions. But only about 30% of people living with HIV are currently virally suppressed. It will be impossible to get to universal viral suppression without working hand in hand with networks of people living with HIV, representing the most impacted communities. We understand how to look at barriers to engagement in care – from unaddressed trauma, unstable housing, economic and food insecurity to discrimination in healthcare settings,” says Naina Khanna, Executive Director of Positive Women’s Network-USA, a national membership organization of women living with HIV and a Steering Committee member of the US People Living with HIV Caucus.

Throughout the day on Monday and Tuesday, attendees of the Counter Conference will participate in sessions in forum and workshop settings presented by people living with HIV and allies.

###

Partners and collaborators for the Counter Conference include: ACT UP/NY, AIDS Foundation of Chicago, Counter Narrative Project, Drug Policy Alliance, HIV Prevention Justice Alliance, Human Rights Watch, the LGBT Institute at the National Center for Civil and Human Rights, Positive Women’s Network – USA, SERO Project, Southern AIDS Coalition, Southern AIDS Strategy Initiative, TheBody.com, Transgender Law Center and the Positively Trans Project (T+), Treatment Action Group, SisterLove Inc., U.S. People Living with HIV Caucus, Women With A Vision. For more information and to RSVP, please visit this link: http://events.aidschicago.org/site/Calendar?id=101682&view=Detail
For more information on advocate critiques of the NHAS 2020 Federal Action Plan, please visit these links:
http://www.bestpracticespolicy.org/2015/12/02/silence-is-still-death-for-sex-workers-the-nhas-implementation-plan/
https://pwnusa.wordpress.com/2015/12/02/pwn-usa-statement-on-the-federal-action-plan-for-the-national-hivaids-strategy-2020/

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.

PWN-USA Salutes Progress and Identifies Opportunities for Women in the New National HIV/AIDS Strategy

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford@pwn-usa.org / 347-553-5174

July 31, 2015 –Yesterday, the White House Office of National AIDS Policy (ONAP) unveiled the newest version of the US National HIV/AIDS Strategy (NHAS, or Strategy), updated to 2020. Positive Women’s Network – USA (PWN-USA), a national membership body of women living with HIV, applauds the Strategy’s stated commitment to address the effects of past and current trauma in HIV care, and its expansion of priority populations which now include Black women, transgender women, youth, and people in the Southern states.

5things_nhas2020_crop
Credit: AIDS.gov.

“This new version of the Strategy corrects a number of the omissions pointed out in our gender audit of the initial version of the Strategy,” says Naina Khanna, Executive Director of PWN-USA. The new NHAS maintains the previous version’s overall goals of reducing new HIV cases and HIV related health inequities, improving health outcomes, and achieving a more coordinated national HIV response. In light of stark statistics and ongoing calls from advocates for federal recognition of the impact of HIV on Black women and Southern residents, the Strategy now includes a metric to measure progress toward reducing new HIV cases among these two overlapping groups.

However, the Strategy does not explicitly address disparities in health outcomes for Black women already living with HIV, whose death rates dwarf those of their white counterparts. Transgender women, who face astronomical HIV rates and high vulnerability to violence, are on a short list for indicators to be developed to measure progress in serving them under the new Strategy, but no such indicator exists as of the Strategy’s launch.

Following years of advocacy by PWN-USA leaders, the 30 for 30 Campaign, and others, the work of the Federal Interagency Working Group on the Intersections of Violence Against Women, HIV, and Gender-related Health Disparities has been integrated into the steps and recommended actions of the new Strategy. The Strategy also includes language committing to explore trauma-informed approaches to women’s HIV care.

Nevertheless, despite copious evidence that sexual and reproductive rights of people living with HIV are routinely violated, there is still no mention of reproductive health or rights, and sexual health of people with HIV is only marginally addressed, in the new NHAS.

A federal plan for putting the Strategy’s commitments into action is expected before the end of this year. PWN-USA encourages ONAP to take advantage of this opportunity to strengthen the Strategy’s effectiveness, including but not limited to: incorporating explicit language and metrics around sexual and reproductive health and overall quality of life for women living with HIV; developing indicators to support HIV prevention and care for transgender women; addressing root causes of poor health outcomes among Black women living with HIV; and developing a plan to address mental health, including high rates of depression as barriers to quality of life for women living with HIV.

We commend ONAP for its efforts to ensure greater responsiveness to the needs of women, transgender women, and youth in the new National HIV/AIDS Strategy, and look forward to working in partnership to support implementation over the next five years.

More Information:

30 for 30 Campaign Applauds Inclusion of Women’s Health Needs in New National HIV/AIDS Strategy

Full text of the Strategy

Infographic: National HIV/AIDS Strategy: Updated To 2020 – What You Need To Know

Infographic: National HIV/AIDS Strategy: Updated To 2020 – 5 Major Changes Since 2010

President’s Executive Order — Implementing the National HIV/AIDS Strategy for the United States for 2015-2020

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)

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