Young Women Living with HIV Deserve Support and Leadership Roles in HIV Community

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

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

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

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

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

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

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

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

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

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

Present a Session at the PWN-USA SPEAK UP! Summit

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March 31, 2016: Positive Women’s Network – USA (PWN-USA) is thrilled to announce our call for session proposals for SPEAK UP! A National Leadership Summit for Women Living with HIV 2016.

We invite proposals for various types of sessions (affinity groups, discussion group, or workshop) for SPEAK UP! Positive Women’s Network – USA’s 2016 National Leadership Summit.

SPEAK UP! A National Leadership Summit for Women Living with HIV will be held September 27-30, 2016, in Fort Walton Beach, FL. This Summit is open only to women with HIV, including transgender women with HIV.

In September 2014, PWN-USA held our first-ever National Leadership Summit to build advocacy skills and leadership capacity among over 200 women living with HIV from 26 states, the US Virgin Islands, Canada and Mexico. Participants from the 2014 Summit have gone on to do amazing work in their communities, fighting stigma, advocating for fair policies and supporting people living with HIV in their regions. The 2016 Summit will be designed for both first time participants and 2014 alumni as emerging and seasoned advocates to deepen advocacy and collective organizing strategies during a key election cycle.

You can read about the magic that happened at our 2014 Summit here.

The theme for SPEAK UP! 2016 is: Organizing for Collective Power.

We’re serious about building power. In this critical election year, we remain committed to our vision: a world where all people with HIV live free of stigma and discrimination. We work to achieve this by preparing and involving women living with HIV, in all our diversity, including gender identity and sexual expression, to be meaningfully involved at the tables where decisions are made about our lives, our communities, and our rights. We actively work at the intersections of race, class, gender, immigrant status, sexual orientation and more.

If you are interested in contributing to this growing and vibrant community, we encourage you to submit an abstract to conduct a session (workshop or other activity at the Summit). As a session leader you will ensure that information and skill-building activities are provided in line with PWN-USA values, priorities, and goals for the Summit.

There will be 5 core tracks at the Summit:

1) Rights, Power and Justice

2) Building Leadership Skills

3) Policy and Advocacy

4) Media & Strategic Communications and

5) Advancing the HIV Research, Care, and Prevention Agenda

Final decisions on session proposals will be made with an eye towards meaningful involvement of women with HIV and communities of color as presenters. In particular, we seek strong representation of women living with HIV, people of color, trans and gender non-conforming individuals, and young people as presenters. We welcome abstract submissions from well-intentioned allies and encourage allies to submit in collaboration with women living with HIV.

The deadline for proposal submissions is 11 PM EDT, Friday, April 29, 2016.

For more information about submitting your proposal, click here.

To submit your proposal, click here or download the Word version of the proposal submission form.

 

National HIV/AIDS Strategy and Federal Action Plan Are Inadequate!

Both documents represent missed opportunities to fully address the HIV epidemic in the U.S.

As researchers, government officials, policy experts and advocates gather for the National HIV Prevention Conference, a diverse coalition of networks of people living with HIV (PLHIV), and our key partners and allies, from all over the U.S. have joined together to express our deep dissatisfaction and disappointment regarding the National HIV/AIDS Strategy (NHAS): Updated for 2020 and the accompanying Federal Action Plan.

We have repeatedly attempted to engage in dialogue with and share our recommendations for the NHAS, but have been met with little interest from the Administration. The development and implementation of a National HIV/AIDS Strategy that included greater and more meaningful involvement of PLHIV and community partners would hasten progress in the effort to end HIV as well as be a powerful legacy for President Obama and subsequent administrations.

The Federal Action Plan is an underwhelming update and trumpets what has already been accomplished rather than providing specifics about what must be done. For example, citing the July 2014 issuance from the Department of Justice’s Best Practices Guidance informing state Attorney General’s about HIV criminalization concerns, while important, is not new.

In other cases, we see that mandates are not met. President Obama’s Executive Order, issued in July 2015, required the development of recommendations for increasing employment opportunities for PLHIV.  Yet such recommendations are not evident in the Federal Action Plan. There also are no assigned roles for key federal agencies (including those responsible for HIV care and prevention) to identify and address employment needs, nor capacity building to support community-based efforts to do so.

We are disappointed to note that once again, as was the case throughout the Bush presidency, key stakeholder groups that are disproportionately impacted by the epidemic have been entirely omitted or miscategorized, including sex workers, immigrants and people of trans experience.

The Federal Action Plan also fails to set forth any mechanisms for involvement by people living with HIV, including PLHIV networks, in achieving critical goals, including universal viral suppression.

We are tired of having our vital concerns and expertise ignored or dismissed and being invited to participate at tables already set for us, with an entire menu already planned, and usually at the last minute. Since the first NHAS was released in 2010, we know our involvement, usually uninvited — perhaps sometimes unwelcome — has constructively helped to shape improvements in HIV prevention, care and treatment.

NHAS 2020 calls for “greater and more meaningful involvement of people living with HIV”. It is time to back up that rhetoric with specific steps to more proactively engage and more efficiently utilize the expertise of networks of people living with HIV.

We call for PLHIV to be seen as the subject matter experts on our lives—not merely as “patients,” “clients” or “consumers”—and to be included in meaningful and specific ways in the ongoing implementation, monitoring and evaluation of the National HIV/AIDS Strategy.

If we as a nation truly seek to end the epidemic, it will require more than biomedical interventions. It will require leadership by and partnership with the networks of PLHIV and every key population of people living with or at risk of acquiring HIV.  Among our most pressing priorities are the following:

  • We must include sex workers in every conversation, acknowledging that criminalization of sex work and the related policing of transgender people are directly linked to consistently worse health outcomes for communities affected by this criminalization.
  • We must provide culturally relevant access to testing and healthcare for immigrants without criminalization and penalties, not only through Immigration and Customs Enforcement (ICE) facilities, but also through the providers that serve these communities.
  • We must provide strong leadership against state and military laws that target PLHIV and provide for review of previous prosecutions.
  • We must collect better housing data for those under the age of 18 who are living with or at risk of acquiring HIV and we must measure housing needs by assessing housing instability and not just homelessness.
  • Rather than simply address discrimination with current laws, we must research and acknowledge HIV stigma to address it systematically with federal agencies, partners and federal grantees.
  • PrEP is an important prevention strategy within a limited range of communities but for many transgender people and sex workers “test and treat” and “treatment as prevention” approaches, including PrEP, divert resources away from approaches that we know work, such as comprehensive peer-led prevention programs and advocacy to remove legal barriers, criminalization and policing of condoms and medications.
  • We must immediately remove transgender people from the MSM (men who have sex with men) category to truly measure and address the epidemic in this community.
  • Finally, we must act quickly and comprehensively to address the social and structural factors which continue to drive the incidence of HIV and health disparities in communities of color, particularly black gay men and black women, who remain severely disproportionately impacted by HIV.

We, PLHIV and our networks, as well as those allied with us, deserve and demand a better and more inclusive National HIV/AIDS Strategy that includes meaningful engagement for PLHIV networks and key population stakeholder groups to partner with the Interagency Working Group created in the Executive Order.

We demand to have meetings with the Office of National AIDS Policy, the Federal Interagency Working Group, the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC) to discuss NHAS 2020 and its accompanying Federal Action Plan and the Community Action Framework that was developed without adequate community input.

This statement is supported by #PersistentAdvocates living with and affected by HIV.

This statement is reposted with permission from hivcaucus.org.

plenary action1
A strong show of support and solidarity for sex workers left out of the NHAS and Federal Action Plan, organized by advocates including PWN-USA, at the opening plenary for the 2015 National HIV Prevention Conference in Atlanta, December 6.

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!

PWN-USA Welcomes 6 New Members to Its Board of Directors

FOR IMMEDIATE RELEASE 

The new PWN-USA Board of Directors, September 2015
The new PWN-USA Board of Directors, September 2015

Contact: Naina Khanna, nkhanna@pwn-usa.org / 510-681-1169

September 1, 2015 – Positive Women’s Network – USA (PWN-USA), the premier voice of women with HIV in the US, is thrilled to announce the appointment of six new members to its Board of Directors: Tranisha Arzah; Bré Campbell; Cathy Elliott; Octavia Y. Lewis, MPA; Venita Ray; and Evany Turk.

“PWN USA is an organization that creates change; in doing so, we develop new leaders and strengthen activists,” says Barb Cardell, PWN-USA’s Board Chair. “As we continue to bring the voices and needs of all women living with HIV to policy, programming, and activism, we stand on the shoulders of the giants who came before us, and it is our duty to lift up our next group of leaders.”

In full accordance with its mission and strategic plan, PWN-USA’s Board of Directors is 100% women living with HIV. Current Board members represent decades of experience working on HIV and intersectional issues, including criminal justice, housing rights, and reproductive justice. The incoming Board members bring an exciting range of expertise and perspectives to an already sumptuous table.

“I’m excited for so many reasons; but I am most excited that I get to share spaces with such a strong and diverse group of women,” says Tranisha Arzah, a new Board member from Seattle, WA, who is already a seasoned advocate at the age of 25. “PWN-USA highlights the intersectionality of social justice issues, and to be part of these positive social changes that affect the lives of all women living with HIV is an honor.”

Adds Bré Campbell, an incoming member of the Board who hails from Detroit: “I am excited to be a PWN-USA Board member, advocating on behalf of trans women of color who are living with HIV. “We must learn to love our full selves to win the battle for equality. We must advocate for and accept all of our intersections.”

Several members will be stepping down from long stints on the Board – among them Vanessa Johnson, a founding member of PWN-USA who also serves as the organization’s National Training and Leadership Development Director. “I have been a part of and have witnessed nearly eight years of organizational growth, achievement, and sustainability,” says Johnson of her time as a Board member of PWN-USA. “With change comes renewal. I will continue to serve as an educator and advocate with PWN-USA, and to support the new members as they join our sisters in leading and moving our cause forward. I congratulate each and every one of them.”

There were a large number of qualified applicants to the open Board positions; PWN-USA’s leadership wishes to thank all who applied for their passion and interest in our work. “I eagerly look forward to working with a new group of Board members,” Cardell says. “While I will miss the sisterhood I have shared with our outgoing Board members, as we seek change in how our culture treats women living with HIV, we also embrace change as an organization – for we are sisters in solidarity, sisters of action, and sisters of change.”

“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.

One Ounce of Truth: The Collective Power of AIDSWatch 2015

By Susan Mull

Nikki Giovanni wrote a poem called “The New Yorkers.” This is the beginning of that poem:

“In front of the bank building after six o’clock the gathering of the bag people begins. In cold weather they huddle around. When it is freezing they get cardboard boxes.”*

Susan Mull.
Susan Mull.

Stop! I immediately thought of HOPWA (Housing Opportunities for People with AIDS) and the truth we were striving to share with members of Congress on April 14, 2015. Four hundred advocates from thirty states and Puerto Rico were about to converge on Capitol Hill as part of AIDSWatch 2015. One of my peers said, “You cannot stay adherent to medications if you are homeless.” Another said, ”There are currently fifty thousand households served by HOPWA while 1.2 million people in America live with HIV.”

We had so many issues to bring to the attention of Congresspeople. These are some of the issues:

1) there are fifty thousand new HIV infections each year;

2) young people under the age of twenty-five accounted for one in five new infections in 2012;

3) in more than one thousand instances, people with HIV faced charges under HIV-specific statutes in the United States and these charges are not based on science;

4) syringe exchange prevents the transmission of HIV and there is a federal ban on syringe exchange programs!

I had an opportunity to attend a visual journaling class the Sunday after AIDSWatch 2015. I wanted to make sure that my collage pages reflected hope, with power, truth, and a clear civil rights message. We were led in meditation by our leader and then each of us began searching what would manifest our goals for the art we were creating.

I immediately found a magazine that had nine southern states as part of a beautiful graphic and I knew that was mine! One other page included the statistic “1 in 5,” and yet another page had young people at the microphone. My collage page for my journal was to tell the story of AIDSWatch with hope and determination. I have experienced so much profound joy on my journey, so the words “Experience Joy” dominate the top of my page.

In 2015, HIV is still a disease of disparities. We know and believe that health care is a human right. I was drawn to Twitter during our Monday morning forum at AIDSWatch, and found myself typing these words:

”We are HUMAN GEOGRAPHY! That means as constituents our words matter, our words are paramount, our words save lives!”

Race matters. African-Americans account for one half of all new infections. How can black women living with HIV get quality care if it is not mandated that providers, AIDS service organizations, clinicians, and public health departments get anti-racism training? We need to ask questions like: Are the Southern Poverty Law Center and the NAACP training and sending out attorneys to help in each of the nine southern states that are now the epicenter of the AIDS epidemic in America? Who is standing up for transgender women? Who is standing with and fighting for the end of discrimination against LGBTQ youth?

“One ounce of truth benefits like ripples of a pond.” We had so much truth to tell on Capitol Hill. The stigma is so great in nine southern states that many get an AIDS diagnosis on their first visit to a clinic. Where are the leaders from faith communities? Thirty four years into this epidemic we are still asking, “Where are our allies?”

What kind of truth would I tell our Senators and Representatives from Pennsylvania? I decided I had to speak about syringe exchange and comprehensive sex education. Young people in Lancaster County, Pennsylvania, can get $3.00 bags of heroin in rural areas and are desperate for a needle exchange program. Congress must end the federal ban on syringe exchange programs in the fiscal year 2015.

As a teacher, I have tried to share bold truth for years, regarding comprehensive sex education. One of our big “asks” as we spoke to the staffers of our Senators and Representatives was to eliminate the federal abstinence-only programs. They have never worked. Some seventh graders have openly stated that they have already had sex with three partners. They are desperate for truth from us. They are so valuable, so precious. Condoms need to be available in high schools. This is where I reiterate, “Young people under the age of twenty-five are twenty per cent of the new HIV infections each year.”

This work is arduous. As I look at my visual journal, I see that I included phrases like, “Follow your dreams,” “Feed your soul,” and “Seek adventure and respect each other. “ My dream has no fairy tale ending; rather it has an ending so bold that it’s happening as I write.

We, the people with HIV and AIDS, will end this epidemic. We are intrepid. HIV is not a crime. The Pennsylvania team spoke about Barbara Lee’s bill, the HR 1586 and asked our representatives to co-sponsor this bill, the REPEAL HIV Discrimination Act, because HIV criminal laws are often based on long-outdated and inaccurate beliefs rather than science. We had to explain to one staffer that if your viral load is undetectable it is not possible for another person to get HIV from you. What will you get from me? You will get authentic, bold, unrelenting truth!

The HIV epidemic is primarily an epidemic of women of color. We are waging a fierce civil and human rights battle! This is where I quote Nikki Giovanni once more: “For awhile progress was being made . . . then . . . hammerskjold was killed, lumumba was killed, and diem was killed, and malcolm was killed, and evers was killed, and shwerner, goodman, and chaney were killed, and liuzzo was killed, and stokely fled the country, and leroi was arrested, and rap was arrested . . .”

It is not OK that people still die of this disease! It is not OK that stigma exists and keeps people from being tested! It is not OK that children’s lives are lost because we don’t have comprehensive sex education in schools. It is not OK that there is a federal ban on syringe exchange. It would be worse if there had been no AIDSWatch 2015.

We, the activists and advocates, spoke mightily on Capitol Hill. On April 13, and April 14, 2015, we hope we spoke words so powerful that they may still be reverberating. Our work is unfinished. As Elizabeth Taylor once said, “We must win for the sake of all humanity.”

Susan Mull is a PWN-USA member, poet, writer, educator, and longtime activist based in Lancaster County, Pennsylvania.

*All quotes from Nikki Giovanni’s poetry are from the book Selected Poems of Nikki Giovanni.