250 Women from 29 States, DC, the U.S. Virgin Islands, Puerto Rico & Canada SPEAK UP!

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Regional Organizing Institute, Tuesday, September 27

September 28, 2016: After many months and countless hours of planning, organizing and collaborating on a common vision by our Summit Planning Committee of over 20 women living with HIV, SPEAK UP! 2016–the only national leadership summit for women living with HIV–is finally here!

The Summit kicked off Tuesday with three special Institutes: one for leaders of PWN-USA’s eleven official affiliated regional chapters; one for women of trans* experience, led by Positively Trans; and one for young women living with HIV. The full-day institutes gave participants an opportunity to connect, prioritize issues and strategize around how to elevate those issues and reach their goals.

Tuesday evening, the full Summit opened with the plenary State of the Movement featuring 5 fierce panelists: Khafre Abif, Cecilia Chung, Grissel Granados, Vanessa Johnson and Andy Spieldenner, who discussed what the HIV movement is today, what is working, what is not, what needs to change and how intersectional issues affect people living with and vulnerable to HIV. The plenary was followed by a special screening of the documentary co-directed by and featuring Grissel Granados, We’re Still Here, following young people who were born with HIV and the unique challenges they face.

Wednesday morning started with an all-star panel discussing federal policy around HIV, women’s health, health care access and reproductive rights, featuring Dr. Amy Lansky, Director of the Office of National AIDS Policy; Marty Bond, Senior Public Health Advisor for the Office on Women’s Health; Bill McColl, Esq., Director of Health Policy for AIDS United; and Monica Simpson, Executive Director of SisterSong. And much, much more is still in store as SPEAK UP! 2016 continues!

To keep up with the latest, follow the hashtag #pwnspeaks on Twitter (and follow us @uspwn), and check our Facebook page for updates–and of course our Facebook photo album!

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Young Women’s Institute, Tuesday, September 27
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Institute for Women of Trans Experience, Tuesday, September 27

PWN-USA Gets Ready to SPEAK UP!

PrintSeptember 19, 2016 – It’s hard to believe, but we’re only about a week away from SPEAK UP! 2016 National Leadership Summit for Women Living with HIV. We’d like to thank our dedicated Summit Planning Committee for their many hours of time and energy spent planning this Summit to be the best yet!

We look forward to welcoming over 250 women living with HIV to Fort Walton Beach next week. Some are seasoned advocates who have long been involved with PWN-USA and who attended SPEAK UP! 2014; for others, this may be the first conference ever, and an introduction to advocacy. We welcome both and everyone in between, regardless of your experience with advocacy.

To help orient participants to the Summit, we have scheduled two special orientation webinars for registered participants for this week! Click on a day/time below to register for that webinar. If you cannot participate in either webinar, a recording will be available on our website by the end of the week.

Tuesday, September 20, 6 PM EDT/5 PM CDT/4 PM MDT/3 PM PDT

Thursday, September 22, 12 PM EDT/11 AM CDT/10 AM MDT/9 AM PDT

cover-art-final-2We also have the complete program available right here on our website now! Check it out here.

We have put together some travel tips for you as well! Questions about what you should bring? What your registration fee does and doesn’t cover? Find answers here.

We would love to hear your thoughts, feelings and expectations as you get ready for the Summit and throughout the Summit! Write a blog for us! Get started here.

We look forward to seeing you next week!

 

 

PWN-USA Colorado Leads Successful Effort to Repeal HIV Criminalization Statutes

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Photo credit: Victoria Law; from thebody.com

May 13, 2016: A Colorado team known as the “CO Mod Squad,” led by PWN-USA Colorado, in partnership with the Colorado Organizations Responding to AIDS (CORA) and the Colorado Department of Public Health, saw over four years of hard work and persistent advocacy pay off Wednesday, May 11, when Senate Bill 16-146, repealing two HIV criminalization statutes and significantly reforming the third, passed both the senate and the house. It now only awaits the governor’s signature to become law.

“Today we changed the world,” said Barb Cardell, PWN-USA Board Chair, co-chair of PWN-USA Colorado and a presenter at the HIV Is Not a Crime II Training Academy. “With people living with HIV leading the way and our allies supporting us, we were able to do something many thought we couldn’t and we had only dreamed of until now.”

The bill, introduced into the state senate in March by Sen. Pat Steadman (one of the keynote speakers at HIV Is Not a Crime II) and into the house by Rep. Daneya Esgar, updates statutes related to HIV to include all STIs, in accordance with current science and medical advances, and removes the HIV criminalization language in the statute.

“In 2014, at the first HIV Is Not a Crime conference in Grinnell, someone asked which state was going to be the next to reform their HIV criminalization laws,” added Kari Hartel, co-chair of PWN-USA Colorado. “I answered with confidence that it was going to be Colorado! It has been a long road, and this bill isn’t perfect. But if this process has taught us anything, it’s that our advocacy efforts CAN and DO make a difference!”

Read more about this historic victory in this fantastic article by Victoria Law for TheBody.com.

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.

 

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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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

Positively Trans Meets at White House, Advocates for Inclusion and Leadership of Trans* Community in HIV Policy

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Tiommi (right) and Arianna Lint (left) at White House, Feb. 10, 2016

by Tiommi Jenae Luckett

Going to the White House was truly something I never had on my radar to do for personal reasons. However, that was years ago when I felt that way. So fast forward and I was invited to participate in a roundtable discussion with members of the Office of National AIDS Policy (ONAP), the Health Resources and Services Administration (HRSA), Centers for Disease Control (CDC) and representatives from other agencies, alongside several phenomenal trans women and trans men who are recognized as experts.

The discussion started off with a synopsis of the things these lead organizations need to improve on when servicing the trans population. We who are of trans experience are already privy to this information and we voiced our frustrations about the inconclusive and nonexistent data of the trans community living with HIV.

We had to let these agencies know that the trans community is not being counted because trans women are seen as men who have sex with men (MSM) and trans men are counted as women. That is problematic, because these ASOs and CBOs that claim to provide services for transgender people seldom do. We also had to let them know that the trans women in attendance were more than beautiful women; we are also hardworking, dedicated, fierce, intelligent and persistent advocates who demand a place at the table. In essence, nothing about us without us. We made it blatantly clear that funds intended to bridge the gap in disparities suffered by the trans community living with HIV are not being used in that manner, but more for the leadership building of Black MSMs.

I know that we got our points across and were heard. As I told Douglas Brooks, Director of ONAP, that I thought my meeting with members of HRSA last year in Arkansas was a step in rectifying the situation, yet as a trans woman living with HIV in Arkansas, whatever surveillance measures are being used are not counting me. That is a huge problem for me. What we members of Positively Trans who were in attendance actually did was to share the preliminary results of our survey of trans* and gender-non-conforming people living with HIV in the South, since the southern region is often neglected from funding opportunities.

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President’s Budget Affirms Commitment to HIV but Raises Concerns for Women and Youth

FEBRUARY 12, 2016: President Obama released the final budget of his presidency this week. While several components of his proposed budget offer good news for women living with and vulnerable to HIV, Positive Women’s Network – USA (PWN-USA) remains concerned by the renewed proposal to eliminate Part D of the Ryan White HIV/AIDS Program, the only federal funding stream that prioritizes services for women, youth and families living with and affected by HIV.

President Obama’s budget maintains level funding of the Housing Opportunities for Persons with AIDS (HOPWA) program at $335 million. This program is critical for many low-income, unstably housed people living with HIV, and we are relieved that, under the President’s budget, it would remain in place and funded. Legislative language changes also modernize the program to ensure better distribution of funding to geographic areas where it is currently most needed.

PWN-USA commends President Obama for eliminating funding for abstinence only until marriage (AOTM) sex education, a policy that has proven completely ineffective and unrealistic. Studies show that states teaching AOTM have higher rates of teen pregnancy and sexually transmitted infections, a waste of taxpayer dollars which could be used to fund comprehensive and non-stigmatizing sex education that affirms people of all gender identities and sexual orientations.

Further, we applaud the addition of $9 million through a Special Projects of National Significance (SPNS) initiative in dedicated funding for Hepatitis C testing and treatment through the Ryan White Program. About a quarter of people living with HIV also have HCV; this new initiative will assist in identifying those individuals and making sure they have access to medications that can cure HCV.

We are pleased by the President’s ongoing commitment to the Ryan White Program, a crucial safety net for women living with HIV, a majority of whom are low-income–particularly in states which have refused to expand Medicaid.

As in years past, our primary concern with this budget is the proposed elimination of Part D of the Ryan White Program. Part D-funded programs provide coordinated care and support services to women living with HIV who may be juggling caregiving responsibilities to family members and children. They also ensure support and services for youth who acquired HIV perinatally or at a young age as they transition to adult care. These programs often function as crucial and culturally relevant entry points into care for underinsured women living with HIV — and for youth, the fastest growing population living with HIV in the U.S. For young people and women living with HIV, their ability to stay engaged in care and deal with the psychological aspects of living with HIV may depend on the availability of services which educate and support family members. Part D is the only Ryan White program which has historically had some flexibility for including affected family members in service delivery.

“We are pleased to see the President’s continued commitment to the Minority AIDS Initiative (MAI) and new efforts to address Hepatitis C co-infection, as well as eliminating outdated abstinence-only policies. However, in light of the failure of National HIV/AIDS Strategy 2020 to address sexual and reproductive health of people living with HIV, it is urgently important to ensure that high-quality sexual and reproductive health care is maintained in the Ryan White program and expanded to people with HIV of all ages and genders.  In addition, the Part D program has historically provided services that facilitate access to care for women and youth. Independently of the mechanisms to fund such services, they must be maintained,” says Naina Khanna, Executive Director of PWN-USA.

“Part D services are vital to meeting the needs of women, children and young adults,” adds Kari Hartel, co-chair of PWN-USA Colorado and a Client Advocate and Retention Specialist in a Part D program. “The reason we’ve seen a decrease in vertical transmission is because of the extraordinary efforts of these programs. Part D is uniquely equipped to focus on the needs of women living with HIV and provides a level of support to young people that cannot be matched in other parts of the program. As we continue to see increases in the number of young adults being diagnosed with HIV, cutting Part D would be catastrophic, especially at a moment when, for the first time ever, we have the tools in care and prevention to turn the tide.”

For more details on the President’s budget proposal, click here.

 

 

 

The Epidemic Among Black Women Requires More than Rhetoric


PWN-USA Statement for National Black HIV Awareness Day

by Vanessa Johnson and Waheedah Shabazz-El

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

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

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

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

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

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

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