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

**FOR IMMEDIATE RELEASE**

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

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

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

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

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

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

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

The full report is available here.

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women centered care graphic

The Epidemic Among Black Women Requires More than Rhetoric


PWN-USA Statement for National Black HIV Awareness Day

by Vanessa Johnson and Waheedah Shabazz-El

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

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

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

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

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

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

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

Securing the Future of Women-Centered Care

Findings of a Community-Based Research Project

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

“One thing that struck me is how many women need counseling and mental health assistance, but don’t know how to go about getting it,” said Pat Kelly, PWN-USA Board Co-Parliamentarian and one of the community-based researchers on the project.

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

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

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

NWGHAAD Twitter chat promo v2
 

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.

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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/

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.”

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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.

Separating Science from Stigma Following the Charlie Sheen Disclosure

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

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

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

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

How Can I Prevent HIV Transmission?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

50 Organizations Sign on to Letter to HRSA to Prioritize Trauma-Informed Care

Last month, PWN-USA and the Women’s HIV Program (WHP) at the University of California, San Francisco (UCSF) submitted a letter to the Health Resources and Services Administration HIV/AIDS Bureau (HRSA HAB), administrators of the federal Ryan White Program, recommending key National HIV/AIDS Strategy implementation steps to advance trauma-informed care. (Read the full text of PWN-USA and WHP’s letter to HRSA HAB here.)

50 organizations from around the country signed onto the letter in support of these requests for action to support implementing trauma-informed practices in clinics receiving federal Ryan White funding:

  • 30 for 30 Campaign
  • AIDS Foundation of Chicago
  • AIDS United
  • Albany Damien Center
  • Association of Nurses in AIDS Care
  • BABES
  • Bedford Stuyvesant Family Health Center
  • Black AIDS Institute
  • Borinquen Behavioral Health
  • Boulder Community Health
  • Cascade AIDS Project
  • Christie’s Place
  • Colorado Organizations Responding to AIDS (CORA)
  • Community AIDS Resource and Education Services of Southwest Michigan
  • Counter Narrative Project
  • Desiree Alliance
  • Gran Varones
  • Harlem United
  • Hartford Commission on HIV/AIDS
  • HIV Prevention Justice Alliance
  • HIVE at UCSF
  • IKnowAwareness
  • International Community of Women Living with HIV, North America
  • Iris House, Inc.
  • Khulumani Support Group
  • Legacy Community Health
  • Let’s Kick ASS (AIDS Survivor Syndrome)
  • Michigan Coalition for HIV Health and Safety
  • National Alliance of State and Territorial AIDS Directors (NASTAD)
  • National Black Leadership Commission on AIDS, Inc.
  • National Working Positive Coalition
  • Pediatric AIDS Chicago Prevention Initiative
  • Positive Iowans Taking Charge
  • PWN-USA Colorado Chapter
  • PWN-USA Louisiana Chapter
  • PWN-USA Michigan Regional Chapter
  • Ribbon Consulting Group
  • RISE Multimedia
  • Sex Worker’s Outreach Project
  • SisterLove, Inc.
  • Southern AIDS Coalition
  • Southern HIV/AIDS Strategy Initiative (“SASI”)
  • Treat Me Right, Inc.
  • Tripp Consulting
  • US People Living with HIV Caucus
  • Wayne State University Prevention Services
  • Women with a Vision, Inc.
  • The Women’s Collective

PWN-USA thanks all of these organizations for their help in emphasizing the importance of trauma-informed care in the National HIV/AIDS Strategy and in holding HRSA HAB accountable for prioritizing it in the implementation steps.

PWN-Philly Awarded $19,000 AIDS United Grant to #StandUptoStigma

The Philadelphia chapter became the first PWN-USA regional chapter to successfully apply for a major grant with the award of $19,000 from the AIDS United Positive Organizing Project to provide a series of workshops and interventions to fight the use of stigmatizing language that leads to and reinforces discrimination and violence against people living with HIV, and, by tacitly discouraging testing, treatment and disclosure, actually hinders prevention efforts.

Says Teresa Sullivan, one of the founders of the PWN-Philly chapter and a current PWN-USA Board member, “HIV stigma keeps people from linking to health care. The consequences of HIV stigma and HIV discrimination are wide-ranging. Some people are shunned by family, peers and the wider community, while others face poor treatment in health care and education settings and the erosion of their human rights. We seek to promote and enhance the national ‘Stand up to HIV Stigma Project’ here in Philadelphia, and to enhance meaningful involvement of people with HIV in service organizations. Our project will be led by women living openly with HIV in Philadelphia.”

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

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