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.

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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

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.

World AIDS Day 2014, PWN-USA Style

The impact of advocacy by women living with HIV is happening, and is felt, all the time in communities where our members and sisters are doing their work on behalf of their communities. World AIDS Day is a time to truly highlight, and celebrate, that daily impact.

Below are some highlights of PWN-USA members’ activities across the US this World AIDS Day – Monday, December 1, 2014, and all week long. You can also check out this listing of a range of events featuring PWNers during World AIDS Week!


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PWN-USA-Philadelphia members congratulate Regional Organizing Coordinator Waheedah Shabazz-El after receiving her Red Ribbon Award at UPenn Center for AIDS Research (CFAR) 11th Annual Awards Ceremony at City Hall

 

The Houston Positive Organizing Project, which includes members of PWN-USA, was successful in getting Houston Mayor Annise Parker to officially proclaim December 1 as World AIDS Day in the city. View the proclamation

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The Alameda County Public Health Department presented the 5th Annual Dr. Robert C. Scott “Trailblazer Award” to Naina Khanna, PWN-USA’s own Executive Director!

 

 

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Columbus, Georgia-based PWNer Tammy Kinney (left), with Juanita Hubbard and the Mayor of Columbus, Teresa Tomlinson (center)

 

 

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Texas PWNer Nell Watts (second from the right), speaking with a panel of educators, Tarrant County Health Department, and Case Managers at University of Texas – Arlington Students for Global Change

 

 

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Virginia PWNer Janet Hall was a Peer Advocacy Award honoree at the 9th Annual World AIDS Day Gala in Norfolk!

 

 

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PWN-USA co-founder and Board member Pat Migliore (second from right) with PWN-USA sisters and allies in Seattle, after she received a Lifetime Achievement Award for her work in HIV/AIDS from Seattle Mayor Ed Murray at the 11th Annual Stronger Together World AIDS Day Breakfast!

 

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Texas advocate and ally Morenike Giwa Onaiwu of Advocacy Without Borders has launched the #NotYourInfection campaign to eliminate stigmatizing language from US laws. Read more about the campaign

 

 

 

Dominique Banks of Memphis, TN, represented PWN-USA and Project SWARM powerfully at the Women’s Empowerment Forum on Dec 4!

 

VIDEOS

PWN-USA-South Carolina member Stacy Jennings reads a poem as part of her submission to TheBody.com’s #RedRemindsMe contest. Vote for her submission!

PWN-USA Board Chair Barb Cardell spoke out as part of a video series from the HIV Disclosure Project about HIV science, stigma, and truths about transmission risk. Read the article and view all three videos

 

 

Check out this video of Georgia-based PWNer Tammy Kinney on the 11 o’clock news on World AIDS Day!

Everything You Need to Know About SPEAK UP!

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Lepena Reid, Janet Kitchen and Rose Todd, South Florida

SPEAK UP! A National Leadership Summit for Women Living with HIV is just one week away! Here’s everything you need to know, whether you’re coming to the Summit or following the happenings there from afar:

PWN-USA SPEAK UP! Summit Orientation Webinar – slideshow and voice recording of a helpful presentation on the ins and outs of the Summit (here’s a PDF of just the slides from the webinar)

SPEAK UP! Summit Official Website – the place to go for the full program, information on travel, a list of our generous sponsors, and much more!

“I’m Going to SPEAK UP! Because …” – videos and images from SPEAK UP! Summit participants about why they’re making the trip to Fort Walton Beach

Want to volunteer at SPEAK UP!? Contact Nerissa Irizarry to sign up: 510.698.3811 | nerissa.pwnusa@gmail.com

Here’s some background information on the Summit if you want to know more!

Like us on Facebook and follow our Twitter account and the hashtag #PWNSpeaks for up-to-the-minute updates from the Summit!

For those who are coming to SPEAK UP!:

SPEAK UP! A National Leadership Summit for Women Living with HIVWHAT DO I BRING??

  • Dress – Summit dress code is casual to business casual for hot weather. Bring your best pj’s because you will be sharing a room and we are planning a pajama party! Other suggestions:
  • Beach towels
  • Enough Meds – couple extra days supply just in case
  • Medical insurance card
  • Cellphone charger if you have your cell
  • Laptop and charger if you need one
  • State-issued ID
  • Sunscreen and hat for the sun, bathing suit if you plan to get in pool or ocean
  • Refillable water bottle
  • Extra business cards if you have them for networking
  • $30, in cash or on your debit card, to present at check-in for hotel incidentals (will be refunded)

Upon arrival at the Ramada Plaza Beach Resort:

  • 2 pm: Summit registration
    Fill out a few forms, get your program & conference bag!
  • 3 pm: Hotel check-in
    You will be assigned a shared, double room with mini-fridge & microwave
  • 5 pm: Summit opening session and dinner begins

Florida, here we come!!!

Looks like we made it!
Looks like we made it!

I am not the Enemy, I am the Answer

Spotlight on the South: “I am not the enemy, I am the answer” – an interview with Bonetta Graves and Juanita Williams

By Sonia Rastogi and Naina Khanna

The epidemic in the Southern United States is “skyrocketing. Every week we get two to three newly diagnosed people, while HIV clinics are closing their doors from lack of funding” states Bonetta Graves, speaker and educator for Common Threads, a project of the National Association of People with AIDS (NAPWA), a POSITIVE Voices member, a project of the South Carolina HIV/AIDS Council, and an HIV-positive woman based in Manning, South Carolina.

Geographically, the South is disproportionately hard-hit by the HIV epidemic. In 2001, the South was 36% of the U.S. population and 39% of AIDS cases (not including HIV cases) . Extreme poverty, stigma, unstable health care, and piecemeal funding create a context where the Southern U.S. has the highest total number of new HIV/AIDS cases, the most people without health insurance, and the highest overall death rate linked to HIV.  Seven of the ten states with the highest AIDS case rate among women are in the Southern U.S. including Louisiana, South Carolina, Mississippi, and Tennessee.

Juanita Williams states that the top three needs of HIV-positive women in the South are transportation, housing and supportive services. Based in Orangeburg, South Carolina and a previous resident of Atlanta, Georgia, Juanita is a facilitator for Common Threads, founding member of PWN, founding member of SisterSong, and an HIV-positive woman. She remarks, “peer support is hard to find. You have to go underground. You have to talk to one of your friends to see if they know someone who is HIV-positive and who is willing to sit down and meet with you.” Accessing a public space such as a hospital or a clinic is not an option.

 

Juanita Williams, based in Orangeburg, South Carolina, displays her Living Quilt, a pilot project with The Names Project. Instead of creating quilts of people living with HIV who have passed, a Living Quilt reflects on the lives of people who are living with HIV.

 

Known widely as the Bible Belt, the South is also the stroke belt. When discussing health disparities, the South experiences lack of access to information, technology, services, and quality health care. “There are very few churches that will associate themselves with people living with HIV […] [people living with HIV are] treated as cast aways,” states Bonetta. For Juanita, stigma starts with health care providers who have significant influence in the community: “if the health care field would stop the fear, they could dispel [stigma]. Even with criminalization, you have people criminalized for spitting on people. Health care field support us and say [that HIV cannot be transmitted from spit].”

The U.S. National HIV/AIDS Strategy (NHAS) is a monumental document in the government’s approach to the domestic HIV epidemic. However, the NHAS does not prioritize women. The 12 Cities Project is the first initiative to implement the goals of the NHAS by choosing and funding 12 cities to create HIV Prevention Planning Programs. This initiative does not include states where women are predominately affected including Louisiana, South Carolina, Mississippi, North Carolina, and Tennessee.

Funding continues to be inadequate and restricted for the Southern U.S. Investment in building leadership of HIV-positive women, especially women of color, and their allies, proportional and long-term resources to combat stigma and criminalization, and a scaled up health delivery model for non-urban geographies is needed. Juanita concludes that the voices of HIV-positive women are critical: “I am not the enemy, I am the answer.”