On #NWGHAAD, PWNers Assert and Celebrate #BodilyAutonomy

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

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

On #NWGHAAD, We Celebrate #BodilyAutonomy

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

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

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

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

PWN-USA Members Raise Awareness on National Women & Girls HIV/AIDS Awareness Day

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From coast to coast and across the World Wide Web, Positive Women’s Network – USA members took advantage of National Women and Girls HIV/AIDS Awareness Day (NWGHAAD), March 10, and the days before and after to raise awareness: both to the fact that women are still vulnerable to HIV and about the unique challenges facing them.

From hosting or co-hosting special events, like PWN-USA Philadelphia and PWN-USA Ohio did, to speaking at existing events, like PWN-USA Colorado and PWN-USA Georgia did, to writing wonderful blogs like PWN-USA Bay Area did, our members went above and beyond to make sure that the women who needed to hear the message heard it.

PWN-USA also released our community-based participatory research report on March 10, detailing the barriers to care so many women living with HIV face, in a webinar, and continued the conversation on Twitter with our partners at Greater Than AIDS and The Well Project.

The PWN-USA Ohio event inspired this lovely poem by Princess:

We are family and Sisters.

Give Love to one another, know matter what the issue my be; we all have the same thing in common, called the Virus, that continues to spread. It’s been around over 30 years.

We, as Sisters, understand one another’s feeling and love each other for who we are. We don’t expect anything from one another.

We will show our Love to each other, and say, “I understand, and together, we will overcome this Virus.”

Think positive, encourage one another, when one feels down, pick her up and give her a  loving Sister hug and say, “It’s OK, you’re going to be all right.”

Stand by each other, whether you are black or white, or in-between, in showing one another the Sister hugs. Just because we have the Virus, we are not going to let it get us down, but instead pick us up, and encourage us to pick each other up.

With our Faith, we  travel through the New Beginning of a New Day as we walk day by day, encouraging our Sisters and ourselves in saying, “We are someone and will always  be somebody,” to encourage other Sisters in fighting this Virus called HIV & AIDS.

From Sister with HIV

 

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

PWN-USA Philly Displays the AIDS Memorial Quilt in Honor of NWGHAAD

Teresa Sullivan

March 3, 2016

by Teresa Sullivan, Senior Member of PWN-USA Philadelphia, Board Member of PWN-USA

In June of 1987, a small group of strangers gathered in a San Francisco storefront to document the lives they feared history would neglect. Their goal was to create a memorial for those who had died of AIDS related illnesses, and to thereby help people understand the devastating impact of the disease.

This meeting of devoted friends and lovers served as the foundation of the NAMES Project AIDS Memorial Quilt.

Today there are NAMES Project chapters across the United States and independent Quilt affiliates around the world. Since 1987, over 14 million people have visited the Quilt at thousands of displays worldwide. Through such displays, the NAMES Project Foundation has raised over $3 million for AIDS service organizations throughout North America.

AIDS Fund has partnered with the Names Project Foundation to present panels of the AIDS Memorial Quilt. On March 5, 2016, PWN-USA Philly Regional Chapter and the AIDS Fund will display one of the panels in honor of those who are gone but not forgotten at our Annual National Women and Girls HIV Awareness Day event at The Rotunda, 4014 Walnut St., Philadelphia PA 19104. Below is the panel display:

AIDS Quilt

As women activists, we must always remember our Herstory in order to change the future for women living with HIV or AIDS!

Capture AIDS Quilt for NWGHAD event in Philly

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
 

Advancing Collaborative and Shared Leadership and Participation Inclusive of Women Living with HIV

Remarks Delivered at the White House’s National Women and Girls HIV/AIDS Awareness Day Event, “Stepping Out of the Shadows: HIV & Violence against Women and Girls”

By Vanessa Johnson, PWN-USA National Training and Leadership Director

bio - vanessa johnson - headshot
Vanessa Johnson, JD.

I bring you greetings from the Ribbon Consulting Group, a Washington, DC-based firm where I serve as one of its Co-Directors. I am also a Board member of the Positive Women’s Network-USA (PWN-USA) as well as the National Women and AIDS Collective (NWAC).  I was diagnosed with HIV 25 years ago in 1990, the same year I graduated from Temple University’s School of Law.

I want to thank Douglas Brooks, Director of the Office of National AIDS Policy, for inviting me to speak and I want to acknowledge all the other women living with HIV who are with us today, and those who are not. I stand in solidarity with them.

It is on this day, the 10th Anniversary of National Women and Girls HIV/AIDS Awareness Day (NWGHAAD), that I begin my remarks by noting, the World Health Organization, as one of its strategies to end the global AIDS epidemic, authored three international declarations which make commitments to support the greater involvement of women, including women living with HIV, to promote and protect all human rights and fundamental freedoms.

Here in the United States, the basis for supporting the participation of women living with HIV is found in the Denver Principles, an historic document authored in 1983, which outlines the rights of people living with HIV as well as recommendations for participatory leadership and decision-making. Over the course of this 34-year fight, people living with HIV, both men and women, have worked tirelessly to ensure we have a stake in an ongoing battle which has taken the lives of over 600,000 Americans and threatens the health and well-being of another 1.2 million Americans, including 300,000 women, who are living with HIV today in the U.S.

For example, today’s focus on domestic violence and women would not be possible without the leadership and advocacy of women, especially women living with HIV.  The leadership of women living with HIV led to the March 2012 Presidential memorandum establishing a White House working group on the intersection of HIV/AIDS, violence against women, and gender-related health disparities. President Obama’s signing of this memorandum might not have been possible if it were not for the willingness of women in a domestic violence shelter in Duluth, MN, to share their lived experiences with intimate partner violence.

Without their stories, we might not have an understanding that violence against women is grounded in power and control. Likewise, if it were not for the willingness of countless women living with HIV to tell their stories of past and present experiences with violence and trauma, we might not be here at this moment in time affirming what was noted in earlier presentations and the Presidential Advisory Council on HIV/AIDS (PACHA) Resolution that, “women most at risk for or living with HIV are more likely to experience sexual or intimate partner violence one or more times in their lives.”

I stand in here in hope that both communities of women, HIV and domestic violence, which are inextricably linked, will build upon a shared vision to create a world where women, regardless of HIV status, no longer experience violence in their lives. We together must advance collaborative, shared, and supportive leadership which:

1) brings gender equality and human rights perspectives to the forefront;

2) clearly recognizes the role and influence of all women, including women living with HIV;

3) spearheads strategies that effectively address the underlying causes of HIV such as violence against women, feminized poverty and women’s limited voice in decision-making; and

4) reminds our national leaders and partners that the best outcomes are always ones that start with meaningful involvement of affected populations.

Thank you.

Watch the video from the White House event (Vanessa Johnson’s comments begin at 2:27:00)

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Read more about what PWN-USA members are doing on NWGHAAD

More Resources

Stepping Up Commitment: Women and Girls Living with HIV Must Matter Every Day of the Year

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174 

March 10, 2015 – Each year, on March 10, National Women and Girls HIV/AIDS Awareness Day (NWGHAAD) is observed in the US. But at Positive Women’s Network – USA (PWN-USA), a national advocacy network of women living with HIV, we work on addressing the HIV epidemic among women year round. We don’t expect everyone to do that. There are many other issues and communities that require sustained focus and commitment.

However,  the federal government has consistently failed to prioritize women in the domestic HIV response:

Consequently, we are compelled to point out the myriad ways in which violence is perpetrated against women living with HIV. The intersections between HIV, violence and trauma for women are well-documented in the literature, and we applaud the White House Office of National AIDS Policy (ONAP)’s lead role in addressing this critical issue, forming a federal interagency workgroup to address it, and making this issue the centerpiece of its NWGHAAD focus this year.

However, it is important to recognize that violence comes in many forms – from institutions, policies, and practices that systematically render transgender people invisible, to power structures that consistently fail to meaningfully involve women and other communities impacted by HIV in generating recommendations, solutions, and decisions about policies and programs that impact our lives.

To effectively address the HIV epidemic among women, including the estimated 300,000 women living with HIV in the United States, the next National HIV/AIDS Strategy – which will be released this year – must include strategic priorities that address women’s needs.  These include the need for high quality, non-stigmatizing sexual and reproductive healthcare for women with HIV throughout the lifespan, implementation of trauma-informed practices in care settings, and family-centered services that facilitate and support access to care for people living with HIV.

Most important, people living with HIV must be meaningfully involved in crafting sustainable policy and programmatic solutions that reflect the realities of our lives.  On #NWGHAAD, and every day of the year: Nothing about us #WithoutUs.

White Paper Shows Key Gaps in the Affordable Care Act and Opportunities for the Ryan White Program to Provide Healthcare for Women with HIV

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Download the full report (PDF)

Download a one-page summary of the report (PDF)

FOR IMMEDIATE RELEASE

Contacts:

Nerissa Irizarry, Positive Women’s Network-USA – nerissa.pwnusa@gmail.com
Melanie Medalle, SisterLove, Inc. – mmedalle@sisterlove.org
Ariel Tazkargy, National Women’s Health Network – atazkargy@nwhn.org

March 10, 2015 – March 10th marks the observance of National Women and Girls HIV/AIDS Awareness Day – an occasion to recognize the impact of HIV on the lives of women and girls. On this National Women and Girls HIV/AIDS Awareness Day, three organizations working to achieve health justice for women are illuminating the healthcare coverage disparities that impact women living with HIV, and proposing solutions for HIV and health justice advocates.

Positive Women’s Network-USA (PWN-USA), National Women’s Health Network, and SisterLove, Inc., today released a collaborative policy paper examining the unique healthcare needs of women living with HIV, highlighting key opportunities as well as gaps in the Affordable Care Act (ACA), and underlining the importance of the Ryan White Program in the current arrangement of public healthcare for people living with HIV.

“Although the first-ever National HIV/AIDS Strategy, released in 2010, underscored the importance of ensuring access to care for people with HIV, women with HIV continue to face barriers to care which must be addressed,” says Naina Khanna, PWN-USA Executive Director.

In this extremely unsettled post-Affordable Care Act environment, thousands of low-income women and communities of color affected by HIV still lack sufficient health coverage to meet physical and mental health needs, including HIV-related healthcare and life-saving medications. As a result, many people living with HIV rely on critical gap-filling funds administered through Ryan White, for HIV care, medication, and support services. But for women with HIV, access to care through Ryan White is facing a massive threat: elimination of women-specific services if Ryan White Part D is consolidated into Part C, as proposed by the President’s 2016 budget.

We are releasing this policy paper for advocates to use in efforts to promote the needs of women living with HIV in all federal and state-level healthcare coverage discussions. “The unique needs of women affected by HIV, especially in the Deep South, require a greater amount of attention and priority in the implementation of the ACA and the preservation of the Ryan White CARE Act,” says Dazon Dixon Diallo, Executive Director/CEO of SisterLove, Inc. “We will never get to the end of this epidemic without achieving better health outcomes and lower incidence of HIV disease in women in this country.”

We encourage advocates to use the information presented as an entry point for discussions with policymakers, and to use and adapt the recommendations to advance policy goals.

Read and download the full report: Ryan White and the Affordable Care Act: Advocating for Public Healthcare for Women Living with HIV (PDF)

Read and download a one-page summary of the report (PDF)

 

Sister Warriors

By Wanda Brendle-Moss, PWN-USA Member

This article originally appeared on March 4, on The Well Project’s A Girl Like Me blog.

Wanda Brendle-Moss.
Wanda Brendle-Moss.

As we approach National Women and Girls HIV/AIDS Awareness Day on March 10, 2015, my mind is taking a magical mystery journey…

Start Date 1981, the beginning of what would be my 20 years as a Registered Nurse. There was a disease formerly known as GRID, now given a new name, HIV, Human ImmunoDeficiency Virus, and in the advanced stages called AIDS. I worked at North Carolina Baptist Hospital (Now Wake Health) a #1 rated Medical Center in my area. Even given that we were supposedly gifted with some of the medical community’s greatest minds…people admitted with this virus were dying.

For me as a new nurse (I was 27, a single mother of 2, having attended nursing school after the break up of my 1st of 3 marriages) there were several things that went through my mind. My son was about to become a teenager, so when we were all watching the news and the virus was given a name, explaining how it was spread, etc., I told my son that no matter what, he was to respect himself and whomever he chose to eventually have sex with by always, always using condoms.

The other thing that was happening at the hospital…being the “new kid” on the floor…Typically assignments that others did not want went to the new kid. And whenever one of “those men” was admitted, I typically would be their nurse, the difference being…I was unafraid. They were someone’s loved one…and my nursing philosophy to the day I stopped nursing was…every patient is someone’s father, brother, mother, sister, son, or daughter…and I treated them as I wanted my family members treated.

What struck me though was…Where were the women?? … Click this link to read the rest of this article, and view even more photos of Sister Warriors, on The Well Project’s A Girl Like Me blog!