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.

###

women centered care graphic

PWN-USA Statement on the Federal Action Plan for the National HIV/AIDS Strategy 2020

**FOR IMMEDIATE RELEASE**

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

December 2, 2015 – Yesterday, on World AIDS Day 2015-a day to remember the millions who have died of HIV-related causes over the past three decades, honor long-term survivors, and to strategize the way forward toward an HIV-free generation-the White House Office of National AIDS Policy (ONAP) released the Federal Action Plan of the newest version of the US National HIV/AIDS Strategy (NHAS, or Strategy), outlining key steps various federal agencies will take toward addressing the domestic HIV epidemic.  President Obama is the first US President  to create and implement a comprehensive plan to address the domestic HIV epidemic, and Positive Women’s Network – USA (PWN-USA), a national membership body of women living with HIV, applauds the Obama Administration’s continued commitment to address the HIV epidemic and its disparities.

“The federal action plan demonstrates some commitments to improving the health and quality of life of people living with HIV,” says Naina Khanna, Executive Director of PWN-USA. “We are particularly pleased that action steps are mentioned to address some critical needs for highly impacted populations, including the integration of behavioral health and supportive services with primary care, and activities that will support identification and healing from trauma and interpersonal violence (IPV) experienced by people living with HIV. We are also encouraged that the Department of Justice will advise states to modernize or repeal HIV-specific laws that unfairly criminalize people living with HIV. These are advances that advocates, including members of PWN-USA and allies we collaborate closely with, have been fighting for for years.”

Indeed, the plan reflects progress in several crucial areas that PWN-USA has long championed. It calls for implementation science and translational research for prevention and treatment in transgender women, and specifically promises a pilot study of IPV services in behavioral health settings for trans women. Under the plan, an inventory of federally funded trauma-informed programs as well as lessons learned from federally-funded grantee prevention and care programs for women and girls will be created; IPV screening capacity in clinics receiving grants from the Health Resources and Services Administration (HRSA) will be expanded; and crucially, IPV-related services will be implemented in primary health settings, including health centers serving people living with HIV. The Equal Employment Opportunity Commission (EEOC) will do outreach and provide technical assistance to the states in addressing employment discrimination against people living with HIV. The plan also shows an expanded commitment to research and development of new prevention modalities for women and men, including treatment as prevention and a focus on connecting at-risk populations to pre-exposure prophylaxis (PrEP).

PWN-USA commends ONAP for its progress on these critical issues. However, there are still shortcomings in the implementation plan that we hope to see actively addressed over the next five years. For example, while the plan calls for creating an online mapping tool to show women living with HIV where Title X and Ryan White-funded clinics are located, we firmly believe sexual and reproductive healthcare services should be fully integrated into primary care settings for all people living with HIV. Also, while NHAS 2020 discusses discrimination of many types, e.g., employment, healthcare, housing, and the provision of prevention services, the emphasis is on enforcement of federal laws rather than prevention of discrimination. A change in internal policies and practices of institutions, organizations and programs coupled with enforcement will ensure stronger protections for all people living with HIV, including trans women, who face the highest levels of discrimination in employment and housing. We remain concerned at the lack of clear mechanisms for the involvement and leadership of people living with HIV in the ongoing implementation, monitoring and evaluation of NHAS.

Equally concerning are key populations that are either left out completely–like sex workers–or for whom the plan does not do enough. Paradoxically, the plan appears to call for testing, prevention and treatment of immigrant populations only in the context of detention facilities rather than addressing systemic barriers to prevention, care, treatment for immigrants, as well as problematic policing practices that might place immigrants in detention facilities in the first place.

“This federal action plan represents real progress toward ending the disparities in health outcomes among people living with HIV and, more broadly, toward ending the epidemic,” remarks Khanna. “It clearly shows the effectiveness of–and need for–advocacy from people living with HIV. We still have a long way to go, and as people living with HIV, we must continue to hold all the concerned agencies and the next Administration accountable for keeping the promises of the NHAS–and filling in the gaps that remain.”

###

“We Gonna Be Alright”: An HIV Activist at the 1st National Movement for Black Lives Convening

By Waheedah Shabazz-El, PWN-USA Director of Regional Organizing

 

Introduction

Waheedah Shabazz-El.
Waheedah Shabazz-El.

“Unapologetically Black” was a major theme amongst more than 1,500 Black activists and organizers in attendance at the 1st National Movement for Black Lives Convening, held July 24-26, 2015, in Cleveland, Ohio, at Cleveland State University. I arrived of course as a Stakeholder and an HIV Activist representing PWN-USA, Philadelphia FIGHT, and HIV Prevention Justice Alliance (HIV PJA) — intent on helping to shape the landscape of the new Black Movement through identifying critical intersectional opportunities for movement building. Highlighting the implications of HIV Criminalization Laws and how they tear at the very fiber of the Black Community.

Something else happened for me as I disembarked the transit bus and approached Cleveland State University, something rather enchanting. I was eagerly greeted by young adults whom I had never seen or known, with unforeseen energy of reverence, respect, and appreciation. Warm smiles, head nods, door holding, bag reaching; along with verbal salutations of “good morning beautiful,” “good morning Black woman,” “good morning sister,” and “Black Love.” All this just for showing up, just for being there, just for being Black.

I soon realized there was another transformation going on here, because in my mind I was arriving as this “kick ass activist.” However, I was being seen and greeted through a prism of unanticipated reverence. I was being greeted as an elder — a tribal elder. Yes I showed up. Yes I was there. Of course I was Black – but beyond that, I was being bestowed the honorable identification as a Black Tribal Elder. A Black Tribal Elder who (now in my mind) had been summoned here to help shape the foundation for real Black Liberation.

Each person that greeted me was cheerful, kind, and jovial, yet maintained an unspoken seriousness which I came to understand to be a greeting from a deeper place inside each of us. It was utterly amazing. Our spirits were meeting, touching, embracing, and speaking in unison, saying to each other: “We are here to be free.

 

Day One, July 24

Waheedah with PWN-USA-Ohio Co-Chair Naimah Oneal.
Waheedah with PWN-USA-Ohio Co-Chair Naimah Oneal.

Day One of the conference and I was already hyped. Feeling grand and safe and appreciated, it was time to get down to work. Registration was seamless (since folks at the front of line called my name); then we were off to the opening ceremony. Greetings, salutations and introductions of the founders of the movement, local leaders and honoring of family members of young lives taken much too soon. The highlight of the opening ceremony for me was when Black Lives Matter cofounder Alicia Garza took us on a poetic history journey honoring the city of Cleveland for their leadership in the history of the Black struggle: From Ohio’s long and rich history as a hotbed of Underground Railroad activity to the 1964 Cleveland schools’ boycott to protest segregation to the 1st National Movement for Black Lives Convening.

The panel connecting HIV to the Movement for Black Lives was next and entitled “The Black Side of the Red Ribbon.” Panelists Kenyon Farrow, Deon Haywood, “young” Maxx Boykin from HIV PJA, and myself were given the opportunity to bring Black AIDS Activism into perspective and shared our motivation and years of experience working alongside (the Black side) of other community members in the fight to address the HIV dilemma and the stigma surrounding it.

Later that evening, July 24, we were addressed as a mass assembly by several of the recent families who have lost loved ones to police brutality and state violence. Family members of Eric Garner, Rekia Boyd, Trayvon Martin, Mike Brown, and Tamir Rice and Tanisha Anderson — both local victims of police murder. There was also cousin of the late Emmett Till.

 

Day Two, July 25

Day Two was more of the same “Black Love,” “good morning Black Man” and an opening plenary, yet something a bit different occurred. The Movement for Black Lives made its first essential internal transformation without any resistance. The challenge was eloquently articulated by a delegation of transgender and gender-variant participants who were invited to the stage: “The Movement for Black Lives must be a safe place for all, and inclusive of all gender identities and sexual expressions.”

The delegation introduced a list of logistic challenges that were overlooked, which included: an application with more than two gender choices; trans*-related workshops spread out on the schedule and not all in the same time slot; conference badges that allowed preferred name and pronoun preferences; and use of gender-neutral restrooms. In addition, the delegation offered some “not-so-gender-specific” language. Instead of referring to one another as brother and/or sister, we could use the word “Sib” (short for sibling) a more inclusive term. On the website, the Movement for Black Lives Mass Convening was framed as a space and time that would be used to “build a sense of fellowship that transcends geographical boundaries, and begin to heal from the many traumas we face.” So the transformation is to build a sense of siblingship, instead of fellowship.

Waheedah and panelists at "HIV Is Not a Crime, Or Is It?"
Waheedah and panelists at “HIV Is Not a Crime, Or Is It?”

“HIV Is Not a Crime, Or Is It” was the title of the panel I participated in later in the afternoon on Day Two, and it was a blast – aka a huge success. An expert panel with Marsha Jones, Kenyon Farrow, Bryan Jones, and I fiercely articulated how HIV Criminalization laws disproportionately affect and break down the very fiber of Black Community: their implications on Black Women, their children and Young Black Gay Men, and the impact the laws were having on public health within our Black Community.

 

Day Three, July 26

In the closing strategy sessions, HIV criminalization was kept on the agenda of the Movement for Black Lives. Ending HIV is a must and it will take a movement, not a moment, to take on the issue of ending yet another way of policing Black communities – this time through legal discrimination of people living with HIV.

All in all, the Movement for Black Lives was a gathering where we connected to Black love, Black leadership and Black power, Black culture, Black art, and the Black aesthetic in music. The convening included an amazing workshop on “Building Black Women’s Leadership.” The Movement for Black Lives’ journey continues as we commit our energy toward deepening and broadening the connections that were made at the convening. Again: It’s a Movement not a moment.

Black women, Black men, Black youth, Black elders, Black artists, Black straight people, Black queer people, Black trans* people, Black labor, Black Muslims, Black Christians, and Black Panthers. We laughed together. We cried together, and cheered for one another. We challenged each other and shared life experiences. We shared resources, studied together, and created new networks. We debated. We danced. We chanted. We partied together. We healed. I left there pumped with pride, chanting continuously in my head:

I

I believe

I believe that

I believe that we

I believe that we will

I believe that we will win! And #wegonnabealright.

 

Waheedah Shabazz-El is a founding member of PWN-USA and serves as PWN-USA’s Regional Organizing Director. She is based in Philadelphia.

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

SERO Project and PWN-USA Co-Host HIV Criminalization Track at Positive Living Conference

 

sero_pwn_crop

FOR IMMEDIATE RELEASE

Contact:           Tami Haught: tami.haught@seroproject.com; (641) 715-4182

July 21, 2015, Ft. Walton Beach, FL – The SERO Project and Positive Women’s Network-USA (PWN-USA) are co-hosting the HIV is Not a Crime criminalization education and advocacy track at the 18th annual Positive Living Conference, which will be held in Ft. Walton Beach, FL, from September 18 – 20, 2015.

The track will build capacity for HIV criminalization reform advocacy at the state and regional level, and will bring together community organizers, advocates, experts in law and policy, and people living with HIV, united in their commitment to end the criminalization of people living with and affected by HIV.

“The sessions are organized to help deepen and enhance existing grassroots movements to reform HIV criminalization statutes and end the wrongful use of HIV-positive status in criminal prosecutions,” said Tami Haught, SERO’s conference coordinator.

Naina Khanna, executive director of the Positive Women’s Network-United States of America, said, “The conference will empower attendees with three days of skills-building workshops and practical trainings on state advocacy, grassroots organizing, coalition building, messaging, and familiarity with the human rights, legal, and public health issues related to HIV criminalization.”

With more than 400 participants each year, the Positive Living Conference may be the largest annual gathering of people living with HIV (PLHIV) in the U.S.

“HIV criminalization is a topic that is front and center in the community, and we are thrilled to partner with two national PLHIV networks–SERO and PWN-USA–to bring this information to attendees,” said Butch McKay, executive director of OASIS, the Okaloosa AIDS Support & Information Services, which has sponsored the Positive Living Conference since its inception.

Goals of the criminalization track throughout the conference include:

  • Center the voices, perspectives and experiences of people living with HIV and communities disproportionately impacted by policing and criminalization in HIV decriminalization advocacy
  • Advance advocacy in states addressing HIV-related criminalization, stigma, and discrimination.
  • Foster understanding of the political realities of the legislative process and the skills needed to navigate that process.
  • Developing effective talking points and communication skills.

Please contact Tami Haught, SERO Conference Coordinator, with any questions at:  tami.haught@seroproject.com.  Register for the Positive Living Conference online at www.aidsoasis.org.

Organizational Sign-on Statement in Response to Michael Johnson Sentencing

Joint Statement on the Sentencing of Michael L. Johnson
Counter Narrative Project, Positive Women’s Network (PWN-USA), HIV Prevention Justice Alliance, National Center for Lesbian Rights

On Monday July 13, 2015, Michael L. Johnson was sentenced to 30½ years in prison (a concurrent sentence) after being convicted of “recklessly infecting a partner with HIV” and “recklessly exposing partners to the virus.” We are outraged by this sentencing and Johnson’s incarceration. This represents a failure of the justice system and a blatant manifestation of structural violence in the lives of Black gay men.

michael_johnsonThe State of Missouri was able to convict Michael Johnson without having to prove that he had any intent to infect his sexual partners nor demonstrate that he was in fact the person who transmitted HIV to his sexual partners. We are outraged by the criminalization, arrests and imprisonment of those prosecuted under HIV criminalization laws. We will continue to fight for Michael, to repeal HIV criminalization laws, to dismantle the Prison Industrial Complex, and to end the stigma and violence perpetrated upon people living with HIV by these laws. With this mission in mind, we are calling for the following:

The Right for People Living with HIV to choose if, when, and how they disclose
HIV disclosure is not safe under every circumstance. People with HIV may face risks ranging from loss of employment to personal humiliation, custody battles, and violence resulting from disclosure. In addition, the burden of proving disclosure rests on the person living with HIV, not her/his partner. While we are committed to helping create a world where disclosure of HIV status is safe, we reject the notion that disclosure of HIV status should be coerced by the State. Laws criminalizing alleged non-disclosure do not make it easier to disclose, and do not protect people from acquiring HIV.

An HIV prevention policy that relies on disclosure of HIV status fails to account for the fact that data shows a person is more likely to contract HIV from a sexual partner who is unaware of their HIV positive status and that effective care and treatment for people living with HIV reduces the likelihood of transmission to almost zero. The best approach for those who are HIV-negative or of unknown HIV status is to practice self-efficacy and care – an approach which could include prevention strategies such as: (1) Learning how HIV and other STDs are transmitted and effective ways to prevent contracting the virus (2) Taking PrEP (3) Using condoms (4) Getting tested with partners for HIV and other STDs (5) Engaging in lower risk sexual activities (6) Identifying support and resources to leave unhealthy relationships that don’t support protecting oneself (7) Confronting insecurities that lead oneself to seek validation by engaging in higher risk sexual behavior.

Today, HIV is no longer a near certain death sentence. With timely diagnosis and proper treatment HIV has become a manageable chronic disease similar to diabetes. People living with HIV can and are living long, healthy, and wonderful lives. And yet, the stigma remains. The truth is that criminalization of HIV is not really about our fear of HIV itself but the stigma that is attached to it. Those of us who are not living with HIV fear that if we contract HIV that we will suffer a lifetime of discrimination and rejection. Given this fear, those of us who are HIV negative should understand why someone who is living with HIV would not disclose her or his HIV status. Therefore, the real target is HIV stigma, including institutionalized stigma which manifests in laws and policies such as HIV criminalization.

Advocacy Against HIV Criminalization is Advocacy Against Mass Incarceration
HIV is a human rights issue, and criminalization of people living with HIV is a social justice issue. Resisting the Prison Industrial Complex means understanding how inequities in the HIV epidemic and sentencing disparities within the criminal justice system interface with laws that criminalize people with HIV. HIV criminalization laws serve as a means of expanding the categories of people subject to imprisonment, by virtue of an immutable characteristic-positive HIV status. In effect, this creates a biological underclass. HIV criminalization does not provide solutions nor will throwing people into prison lower HIV acquisition rates.

HIV criminalization is another manifestation of a broader agenda which has attempted to control the bodies, the sexuality, and the desires of queer and trans people and cisgender women, especially those who are low income and/or from communities of color. This is the same agenda that plays out in attempts to control women’s access to abortion and contraception and reproductive decisions. This not only includes denying low income women abortion services through Medicaid but the criminalizing of pregnant women who are drug users. The sexual and reproductive rights of communities of color, LGBTQ folks, and women has been policed and criminalized throughout the history of this country. Policies based on restricting our body autonomy, stirring up homo- and transphobia, and spreading HIV-related fears have never been and will never be just or sound public policy.

Alternatives to Criminalization: Towards Restorative Justice and Healing
We acknowledge the HIV epidemic has caused immense pain to many in our communities. As a society, we must be intentional about supporting and providing healing for those who have been affected by HIV. We firmly believe that HIV criminalization does not serve to meet these ends. Prisons will not save us. Criminalization is never a solution. Instead, we call for a wholistic approach based on restorative justice principles. Rather than resorting to criminalizing sexuality of people living with HIV, we should treat HIV as an issue of public health, individual health, and human rights and dignity. We must ensure that everyone who is living with HIV (and those who are not) have access to quality and affordable healthcare. As stated above, data shows that suppressing the viral load of a person living with HIV through effective care and treatment reduces the chances of HIV transmission to zero, even if condoms are not used. If states like Missouri are seriously concerned about reducing HIV transmission, they would do better to focus their resources on ensuring their residents living with HIV have access to high-quality, nonstigmatizing, trauma-informed, affordable healthcare. Instead they perpetuate a political agenda that cuts lives short and violates human rights, especially for people of color and those living in poverty, by refusing to expand Medicaid.

Even more importantly than individual actions, we must push for societal changes to the norms and stereotypes that inhibit sexual autonomy and encourage higher risk behaviors. We must advocate for sex education that challenges dominant paradigms around gender norms and heteronormativity. Thus, comprehensive sex education rooted in modern medical science, sex positivity, and harm reduction, and inclusive of all sexualities and genders is crucial. We must address systemic discrimination that places people at risk for housing, food and employment insecurity. We must advocate for sex education that challenges dominant paradigms around gender norms and heteronormativity. We must address systemic discrimination that places people at risk for housing, food and employment insecurity. We should demand media accountability on pathologized portrayals of Black, brown, and queer bodies and sexuality.

We should demand media accountability on pathologized portrayals of Black, brown, and queer bodies and sexuality.

Demanding Accountability
HIV criminalization laws are intricately tied to histories of racism, sexism, and homophobia. These forces in the present continue to enact injustice and perpetuate these laws. For this reason, we call for greater engagement of LGBT and racial justice organizations and leaders in HIV decriminalization advocacy. We know various local, state, and national organizations and individuals have already stepped up to the plate, but more boots on the ground are needed to fight back against these laws. LGBT and racial justice organizations must take more leadership around this issue by resourcing advocacy, defense litigation, attempts to repeal these laws at the state level, and drawing attention to HIV criminalization as a practice grounded in homophobia, racism, and sexual and reproductive oppression.

We are heartbroken at what has happened to Michael Johnson, but we are no less determined to fight for him, fight for his freedom, and the freedom of all our brothers and sisters incarcerated under HIV criminalization laws. We are also equally committed to standing in solidarity with all movements committed to ending oppression from the dominant culture of policing and criminalizing vulnerable communities. Together we become more powerful. We must resist. We will resist. We resist.

Black is not a crime.
LGBTQ is not a crime.
HIV is not a crime

Signed:
Charles Stephens
Executive Director
Counter Narrative Project

Naina Khanna
Executive Director
Positive Women’s Network – USA

Suraj Madoori
Manager
HIV Prevention Justice Alliance

Tyrone Hanley
Policy Counsel
National Center for Lesbian Rights

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

#JudgeMaughanDontTakeOurKids

wearehiv.org

Dear Judge Maughn,

My name is Rachel Moats and recently I came across a story about Donna Branom & Henry Calderon that left me terrified and heartbroken. You see, I myself have a beautiful daughter and I am HIV Positive. I was diagnosed in March of 2013, I had contracted the virus from my best friend. We had unprotected sex and he was unaware of his status. (I tell you this only because I’m worried that you may have a preconceived notion that people with HIV must have done something terrible to become infected.) That is not the case.

Learning to live with the virus and accepting myself with the virus is a very long soul searching process. I liken it to the grieving process. Only it’s your old life you’re grieving and now you must learn how to accept your new life with HIV. I have accepted who I…

View original post 521 more words

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