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.

#WhyWeMarch: Toward Liberation and Justice

Art by Jennifer Maravillas
Art by Jennifer Maravillas

January 20, 2017: Today, a thin-skinned, authoritarian narcissist who lost the popular vote by almost 3 million votes is being sworn into the highest office in the United States, and arguably the most powerful position in the world. He has shown utter contempt not only for women, Muslims, Latinx and Black people, immigrants and the LGBT community, but also for the Constitution and its most basic protections, including freedom of the press; democracy; facts; and human decency.

Tomorrow, members of Positive Women’s Network – USA will join hands with an estimated 200,000 women and others who believe in freedom, justice, and equality at the Women’s March on Washington, and with an estimated two million women at “sister marches” in 616 cities around the world.
Continue reading “#WhyWeMarch: Toward Liberation and Justice”

PWN-USA Launches Inaugural Class of Policy Fellowship!

January 19, 2017: Positive Women’s Network-USA (PWN-USA) is proud to launch applications for our inaugural 2017-2018 Policy Fellowship for women living with HIV (WLHIV). The yearlong Policy Fellowship will advance our organizational mission to prepare and involve WLHIV in all levels of policy and decision-making by increasing participants’ ability to engage effectively in the federal policy and advocacy arena. In the current political environment marred by threats to sexual and reproductive rights, basic healthcare, the social safety net and civil and human rights, it is critical that WLHIV are equipped with a wide array of tools to support vibrant, visionary and strategic advocacy on behalf of their communities. Register for an informational webinar about the program and application process here.

The fellowship is open to all women living with HIV, including women of trans experience. We especially encourage young women, women of color, immigrant women, folks who are trans, LGB and gender nonconforming, who live in the South and who possess a strong desire to effect meaningful change in the lives of other WLHIV to apply.  Continue reading “PWN-USA Launches Inaugural Class of Policy Fellowship!”

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!

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

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
 

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

FOR IMMEDIATE RELEASE

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

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

5things_nhas2020_crop
Credit: AIDS.gov.

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

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

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

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

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

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

More Information:

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

Full text of the Strategy

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

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

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

#JudgeMaughanDontTakeOurKids

wearehiv.org

Dear Judge Maughn,

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

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

View original post 521 more words

Updating the National HIV/AIDS Strategy: Vote for the Recommendations Most Vital to Women with HIV!

Can you believe it’s been almost FIVE YEARS since the first National HIV/AIDS Strategy (NHAS) was released in July 2010?

The NHAS is a plan created under President Obama to comprehensively address the domestic HIV epidemic. The first NHAS included four main goals: 1) reducing the number of new HIV infections 2) increasing access to care for people living with HIV 3) addressing population-level disparities in prevention, care and treatment and 4) improving coordination of HIV programs and funding across federal agencies.

The first NHAS addressed some issues which are really important to women with HIV, including repealing HIV criminalization laws and expanding employment opportunities for people with HIV. But it missed the boat on others – failing to mention sexual and reproductive healthcare for people with HIV, failing to talk about the high rates of trauma and violence that impact women with HIV, and not meaningfully addressing the specific needs of transgender women.

Now, the White House Office of National AIDS Policy (ONAP) is soliciting input for the next National HIV/AIDS Strategy, which will be released this summer. This new Strategy (NHAS 2.0) will help to guide priorities for the domestic epidemic, likely for the next five years – which means it will go into the next Administration. It’s critically important that the voices of women with HIV and those who care about us are heard in this process.

The deadline to provide input ends this Friday, May 22nd. Here’s how to provide input:
1. Go to: https://nhas.uservoice.com
You can enter your email address to create a profile.
2. You will see that the opportunity to provide input is grouped into “feedback forums” according to the four goals of the National HIV/AIDS Strategy. You can click on any of the feedback forums to see which ideas have already been proposed.
3. Once you have access to a profile, you have two options:
a. Vote for a recommendation that has already been proposed
b. Propose a new recommendation
You can do both of these.
Note that you get 25 votes per feedback forum. You can vote for multiple recommendations, and you can also cast more than one vote per recommendation.

There are a lot of good recommendations already proposed in the forum. Also, a few weeks ago, PWN-USA released our own top five recommendations for the next National HIV/AIDS Strategy. In line with PWN-USA’s policy agenda and NHAS recommendations, here are just a few of the recommendations which have been proposed on ONAP’s forum that we think are really important. Click the links below to read more about each one. Starred (***) items are drawn from PWN-USA’s five top recommendations!

1. Reducing new HIV infections
a. Lift the ban on federal funding for syringe exchange
2. Increasing access to care & improving health outcomes for people living with HIV (PLHIV)
a***. Develop a minimum standard of care for PLHIV which includes sexual and reproductive healthcare, trauma-informed care, supportive services, and more.
b. Ensure gender-responsive, trauma-informed, coordinated and comprehensive care (this is very similar to the one above).

c***. Announce a national initiative focused on addressing inequity in access to care and poor health outcomes among Black women living with HIV

d***. Launch a national initiative to enhance culturally relevant prevention and care for transgender women
e. Ensure that PLHIV have access to healthy food: “Food as Medicine”
f. Increase and prioritize funding for services that link PLHIV into care
g. Preserve and support women-focused community-based HIV organizations
h. Integrate the work of the Federal Interagency Working Group on HIV and Violence against Women into the NHAS by instituting metrics on addressing trauma and violence

3. Addressing disparities and health inequities
a***. Fund research and development of women-controlled HIV prevention tools
b. Mandate comprehensive sex education in schools, and eliminate support for abstinence-only education
c. Eliminate state-level HIV criminalization laws

Are you excited yet? Ready, set, go vote before this Friday, May 22! (https://nhas.uservoice.com)