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.
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.
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.
“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.
PWN-USA members were on the move this World AIDS Day, representing at events from coast to coast! (Don’t see your event and/or photos here? Please contact Jennie at email@example.com with relevant info and/or photos and she will add them!)
PWN-USA New York City–our newest affiliated regional chapter!–participated in the Brooklyn “Saving Our Homes, Saving Our Lives” charity awards benefit to raise awareness of the challenges facing low-income and formerly homeless people living with HIV, as well as in a World AIDS Day event at Harlem’s legendary Apollo Theater organized to show support for Governor Cuomo’s plan to end AIDS epidemic in New York by 2020.
PWN-USA South Carolina members attended a screening of the film Wilhemina’s War at the Nickelodeon Theater in Columbia, SC, sponsored by the South Carolina HIV/AIDS Council. PWNer Stacy Jennings also starred in a play, “Sex HIS Way,” with a plot line about women and HIV.
PWN-USA Colorado member and Board Chair Barb Cardell was quite busy on and before World AIDS Day, shuttling from one event to another, speaking at a concert hosted by the Boulder County AIDS Project, a breakfast in Fort Collins for the Northern Colorado AIDS Project, a lunch in Denver for the Colorado AIDS Project, and a World AIDS Day candlelight vigil and community education event hosted by the Pueblo County Health Center. (She somehow also found time to be interviewed for this awesome article by former PWN-USA Communications Director Olivia Ford for thebody.com.)
PWN-USA member Lepena Reid in Florida rivaled Barb for being in the most places in a single day, assisting the Florida Department of Health in testing over 190 people on December 1, representing PWN-USA at a historical black church in Tampa alongside students from University of South Florida, Pastors on Patrol, local ASOs, National Black Leadership Commission on AIDS, Purple Up for Domestic Violence, Delta Sigma sorority; and at a dedication of the AIDS Memorial Park in Tampa with the mayor, the AIDS Institute, the Department of Health, other ASOs and government officials. (See photos in slideshow above.)
PWN-USA Philly, not to be outdone, represented PWN at a World AIDS Day event at Temple University, addressing the gathering on the subject of HIV criminalization (see photo in slideshow above).
In San Francisco, PWN-USA Bay Area members attended the amfAR Cure Summit at University of California at San Francisco (UCSF), where researchers explained progress toward a cure for HIV that will be furthered with a $20 million grant just received from amfAR, bringing attention to populations (such as women) too often left out of clinical trials.
In North Carolina, PWN-USA Strategic Communications Action Team member Alicia Diggs participated in a press conference with the North Carolina AIDS Action Network in Durham (see photo in slideshow above).
PWN-USA Georgia members were very active in fighting stigma across the state, representing at a World AIDS Day event at Morehouse College in Atlanta and at another at the Betterway Foundation in Columbus, GA. (See photos in slideshow above.) Members and allies participated in a special event in honor of World AIDS Day at Shy Temple Memorial Church in Atlanta on December 4, including a writing workshop led by author Khafre Kujichagulia, a candlelight vigil and a balloon release (see photos in slideshow above). One of the chapter’s newest members, Danielle Atkins (a.k.a. Ghetto Rose) even performed in a World AIDS Day commemoration event at Tavernpointe Kitchen and Bar in Atlanta. And on December 1, a breathtakingly beautiful documentary about another new PWN-USA Georgia member, Patricia Semiens, was released. Watch it here and share widely!
November 12, 2015: After a very successful inaugural HIV Is Not a Crime National Conference last year, the SERO Project and Positive Women’s Network-USA are pleased to announce that the planning process is underway for a second national conference to support repeal and modernization of laws criminalizing HIV non-disclosure, perceived or potential exposure and transmission, to be held in June 2016.
HIV is Not a Crime II, to be held in June 2016, will unite and train advocates living with HIV and allies from across the country on laws criminalizing people living with HIV and on strategies and best practices for repealing such laws. Skills-building training, with an emphasis on grassroots organizing, advocacy, coalition-building and campaign planning, will leave participants with concrete tools and resources to work on state-level strategies when they return home.
For this training academy, organizers will also emphasize movement building with other decriminalization and criminal justice reform groups. “It’s time to look at the whole context of mass incarceration, racist policing practices, drug policy, sex work policies, and the ways that LGBT and immigrant folks are disproportionately vulnerable in criminalization proceedings, as we consider strategies for repeal and modernization,” says Naina Khanna, executive director of Positive Women’s Network – USA.
Advocates say last year’s conference invigorated on the ground rights-based advocacy led by communities living with and impacted by HIV. “Last year’s HIV is Not a Crime Conference was great because it brought together advocates and people working on changing HIV criminalization laws to brainstorm best practices for people to take home to implement a plan for their state. This was incredibly helpful for us in Tennessee, and really gave us the boost we needed to work on our plan to change the laws here,” states Larry Frampton of Tennessee AIDS Advocacy Network.
“The HIV Prevention Justice Alliance is thrilled to be part of this process again that prioritizes PLHIV, builds power, and ultimately pushes the momentum from the first HIV is Not a Crime conference and this past year in a concerted organizing effort to end these laws across the U.S. in 2016,” says Suraj Madoori, manager of the HIV Prevention Justice Alliance.
“I thought last year’s conference was one of the best discussions in HIV in a long time. It was very powerful to participate in a conference organized by people living with HIV and to hear about their personal experiences around disclosure, prosecution and criminalization,” commented Marsha Martin, Director of the Urban Coalition for HIV/AIDS Prevention Services (UCHAPS). “We have to take on criminalization if we are going to bring about an end to the epidemic. That’s why continuing conferences like this one is so important–and necessary.”
“HIV is Not a Crime II will provide an opportunity for people living with HIV and their closest allies to define their priorities and agenda, educate and mobilize each other and their communities, and further strengthen the community of PLHIV advocates. Michael Callen, one of the authors of the Denver Principles, used to say there was a ‘special magic’ when people with HIV worked together to organize and that is as true today as it was 30 years ago,” states Sean Strub, Executive Director of SERO Project.
Get involved in making the HIV is Not a Crime National Training Academy a success!
The planning partners are currently seeking volunteers for five workgroups, as well as financial support for the conference. To read about and join a working group, click here.
Are you interested in providing financial support for this important event? Please contact Sean Strub, SERO Project or Naina Khanna at Positive Women’s Network – USA for more information.
Last month, PWN-USA and the Women’s HIV Program (WHP) at the University of California, San Francisco (UCSF) submitted a letter to the Health Resources and Services Administration HIV/AIDS Bureau (HRSA HAB), administrators of the federal Ryan White Program, recommending key National HIV/AIDS Strategy implementation steps to advance trauma-informed care. (Read the full text of PWN-USA and WHP’s letter to HRSA HAB here.)
50 organizations from around the country signed onto the letter in support of these requests for action to support implementing trauma-informed practices in clinics receiving federal Ryan White funding:
30 for 30 Campaign
AIDS Foundation of Chicago
Albany Damien Center
Association of Nurses in AIDS Care
Bedford Stuyvesant Family Health Center
Black AIDS Institute
Borinquen Behavioral Health
Boulder Community Health
Cascade AIDS Project
Colorado Organizations Responding to AIDS (CORA)
Community AIDS Resource and Education Services of Southwest Michigan
Counter Narrative Project
Hartford Commission on HIV/AIDS
HIV Prevention Justice Alliance
HIVE at UCSF
International Community of Women Living with HIV, North America
Iris House, Inc.
Khulumani Support Group
Legacy Community Health
Let’s Kick ASS (AIDS Survivor Syndrome)
Michigan Coalition for HIV Health and Safety
National Alliance of State and Territorial AIDS Directors (NASTAD)
National Black Leadership Commission on AIDS, Inc.
National Working Positive Coalition
Pediatric AIDS Chicago Prevention Initiative
Positive Iowans Taking Charge
PWN-USA Colorado Chapter
PWN-USA Louisiana Chapter
PWN-USA Michigan Regional Chapter
Ribbon Consulting Group
Sex Worker’s Outreach Project
Southern AIDS Coalition
Southern HIV/AIDS Strategy Initiative (“SASI”)
Treat Me Right, Inc.
US People Living with HIV Caucus
Wayne State University Prevention Services
Women with a Vision, Inc.
The Women’s Collective
PWN-USA thanks all of these organizations for their help in emphasizing the importance of trauma-informed care in the National HIV/AIDS Strategy and in holding HRSA HAB accountable for prioritizing it in the implementation steps.
October 23, 2015, was our second National Day of Action to End Violence Against Women Living with HIV (WLHIV)–and what a success it was! Thanks to an outpouring of support from our members, communities, allies and organizations working both in HIV and with intersectional issues:
Our Day of Action was endorsed by 92 organizations from around the world (see below) as well as an additional 84 individuals
Numerous and diverse organizations and individuals participated in our lively and informative Twitter Chat, co-hosted by the National Network to End Domestic Violence (@nnedv), SisterLove Inc. (@SisterLove_Inc) and The Well Project (@TheWellProject), the morning of October 23, using our hashtags #EndVAWHIV and #PWNspeaks
Our Flashblog to #EndVAWHIV includes 18 contributions, including the stories of WLHIV impacted by violence and trauma, as well as posts on the topic and intersectional issues from organizations and individuals dedicated to working with WLHIV and domestic violence survivors, several of which were also featured on HIVPlusMag.com and TheBody.com
At least 6 diverse organizations posted statements of support for the Day of Action on their websites
Countless individuals and organizations changed their Facebook and Twitter profile pictures to our official Day of Action logo
Across the country, people heard and discussed the stories of overcoming violence of 5 PWN-USA members in the Kaiser Family Foundation film, Empowered, part of the Greater Than AIDS campaign (see video below)
The goal of our Day of Action is, of course, not only to raise awareness–a critical first step–but also to put forward solutions. One of the major initiatives PWN-USA is working toward is routine implementation of trauma-informed model of care for WLHIV, especially in clinics receiving federal Ryan White Program funding. We are also working to repeal laws that place WLHIV at disproportionate risk of violence, including laws criminalizing HIV, which discourage testing and treatment while perpetuating damaging stigma by sending the message that people living with HIV are dangerous, as well as laws criminalizing sex work and drug use.
PWN-USA called for the first National Day of Action to End Violence Against WLHIV last year in the wake of the brutal murders of Cicely Bolden and Elisha Henson, both of Texas, following disclosure of their HIV status. Nationally, 55% of WLHIV have faced intimate partner violence–and women with a history of trauma are more vulnerable to acquiring HIV. Click here for more facts about violence against WLHIV, or read this excellent article on HIVEqual.org.
PWN-USA thanks the following organizations for partnering with us and/or endorsing our second National Day of Action to End Violence Against Women Living with HIV on October 23, 2015:
30 for 30 Campaign
A Sister’s Gift Women’s Center, Dallas
ACT UP London
African Services Committee
AIDS Foundation of Chicago
AIDS Project Los Angeles
Albanian Association OF PLWHA
APLA Health & Wellness
AS – Center For The Empowerment Youth Of People Who Are Living With HIV And AIDS
Bill’s Kitchen, Inc.
Cascade AIDS Project
Center for Health and Gender Equity
Chicago Women’s AIDS Project
Colorado Organization for Latina Opportunity and Reproductive Rights (COLOR)
Counter Narrative Project
Federal AIDS Policy Partnership Structural Interventions Workgroup (FAPP SIWG)
Fierce Caucus and Black Womens Caucus of Union Theological Seminary
Forward Together Oakland
G III Associates
Gay Men’s Health Crisis (GMHC)
GIRL U CAN DO IT, INC.
Global Justice Institute, Metropolitan Community Churches
Global Network of People Living with HIV, North America
GMFA The Gay Men’s Health Charity (London)
HAART Inc., Baton Rouge
Healthy & Free Tennessee
Hektoen Institute of Medicine
HIV Disclosure Project
HIV Prevention Justice Alliance
Housing Works Brooklyn
Houston AIDS Research Team Cross-Network HIV CAB
Howard Brown Health Center
In Our Own Voice: National Black Women’s Reproductive Justice Agenda
International HIV Partnerships
International Network of People Who Use Drugs
Justice for All Coalition
Lambda Legal L.A.
Latino Commission on AIDS
Lee’s Rig Hub
National Female Condom Coalition
National HIV/AIDS Disability Project
National Network to End Domestic Violence
National Press Club,Nepal
National Working Positive Coalition
Older Women Embracing Life, Inc.
Our Story Inc.
Pediatric AIDS Chicago Prevention Initiative
Philadelphia Department of Public Health Ambulatory Health Services PrEP Program
Positive Living Women Malaysia
PWN-USA South Carolina
PWN-USA San Diego
PWN-USA Bay Area
Ribbon Consulting Group
Sexuality Information and Education Council of the US (SIECUS)
Southwest Boulevard Family Health Care Kansas City
The Afiya Center
The Empowerment Program Denver
The Praxis Project
The Sophia Forum
The Well Project
The Women’s Collective Washington, DC
Transgender Law Center
Tunisian Association of Positive Prévention
Women & Life
WORLD (Women Organized to Respond to Life-Threatening Diseases)
Women With A Vision, Inc.
Women’s HIV Program at UCSF
Click below to watch and share the Kaiser Family Foundation film, Empowered, featuring 5 PWN-USA members in conversation with Tonya Lee Lewis:
And watch PWN-USA Georgia member Danielle, AKA Ghetto Rose, perform a spoken word piece on her experience with domestic violence:
The Philadelphia chapter became the first PWN-USA regional chapter to successfully apply for a major grant with the award of $19,000 from the AIDS United Positive Organizing Project to provide a series of workshops and interventions to fight the use of stigmatizing language that leads to and reinforces discrimination and violence against people living with HIV, and, by tacitly discouraging testing, treatment and disclosure, actually hinders prevention efforts.
Says Teresa Sullivan, one of the founders of the PWN-Philly chapter and a current PWN-USA Board member, “HIV stigma keeps people from linking to health care. The consequences of HIV stigma and HIV discrimination are wide-ranging. Some people are shunned by family, peers and the wider community, while others face poor treatment in health care and education settings and the erosion of their human rights. We seek to promote and enhance the national ‘Stand up to HIV Stigma Project’ here in Philadelphia, and to enhance meaningful involvement of people with HIV in service organizations. Our project will be led by women living openly with HIV in Philadelphia.”
Regional chapters and groups of PWN-USA members and allied organizations are hosting all kinds of exciting events for the second National Day of Action to End Violence Against Women Living with HIV! Check out these events and see if there is one near you–then grab some friends and show up!
Surviving HIV/AIDS, Intimate Partner Violence and Life Experience Through Poetry and Hip-Hop Rhythms
Atlanta, GA SisterLove MotherHouse, 1237 Ralph David Abernathy Blvd SW, Atlanta, GA 30310
Tuesday, October 27, 11 AM – 2 PM
Featuring poet/performer Danielle, a.k.a. Ghetto Rose! Refreshments provided. For more information, please contact Tammy Kinney (SassiSixties, Inc.): 404-707-8864; or Lakeisha Coach (SisterLove): 404-254-4734. (see flyer below)
Rally to End Violence Against Women Living with HIV
Baton Rouge, LA Outside Walmart, 9350 Cortana Pl, Baton Rouge, LA
Saturday, October 24, 10 AM – 2 PM
Contact Meta Smith (firstname.lastname@example.org) for more info.
Conversations On Women’s Health Winter Haven, FL Friday, October 23, 11 AM – 2 PM Winter Haven Garden Center, 3rd Street Northwest, Winter Haven, FL
This inspirational luncheon will gather women together to ignite action around breast cancer, DV awareness, and HIV, featuring speakers Ida Walker and Kamaria Laffrey.
“Break The Silence to Domestic Violence and Raise Our Voices” Domestic Violence Forum
St. Petersburg, FL Saturday, October 24, 10 AM – 1 PM Mount Zion Progressive Missionary Baptist Church, 955 20th St S, St Petersburg, FL 33712
This is a free event open to the public that will include the discussion of verbal, physical, financial, emotional, and mental abuse, including speaker and panelist Lepena Reid.
Breaking Our Chains: Ending The Culture of Violence
Washington, DC Friday, October 23, 10 AM – 4 PM 7059 Blair Rd NW, Washington, DC 20012, USA
We Survived It All: Intersection of HIV & Domestic Violence from a Survivor’s Perspective Washington, DC Thursday, October 22, 2 – 3 PM
The Women’s Collective, 1331 Rhode Island Ave. NE, Washington, DC 20018
Empowered Watch Party, Luncheon & Discussion Chicago, IL Friday, October 23, 12 – 1:30 PM
University of Chicago Medicine
5841 S. Maryland Ave., Chicago, IL 60637
Balloon Release Honoring The Day of Action
Cincinatti, OH Saturday, October 17, 1 – 2 PM 7836 Newbedford Ave., Cincinnati, Ohio 45231
Women of PWN-USA/Ohio will be honoring Day of Action Ending Violence Against Women Living With HIV with balloons released and prayer.
Couch Discussion On Keeping Women Living With HIV Safe From Violence
Cleveland, OH Thursday, October 22, 5 – 8 PM 2829 Euclid Ave, Cleveland Ohio 44115
AHF /Taskforce of Greater Cleveland and PWN-USA OHIO will be hosting a couch discussion about issues related to keeping women living with HIV safe from Violence. Click here for more info and to RSVP on Facebook! (also see flyer below for more info)
Empowered Watch Party and Discussion
Kansas City, MO Saturday, October 24
Embassy Suites, Overland Park, MO
This event is by invitation only–please contact LaTrischa Miles for more information: LaTrischam@kccareclinic.org
Empowered Watch Party
Philadelphia, PA Friday, October 23, 5:30 – 7 PM 1207 Chestnut St., 2nd floor, Philadelphia, PA (see flyer below for more info)
Empowered Watch Party & Biodegradable Balloon Release
Houston, TX Friday, October 23, 5 – 7 PM
Montrose Center, 401 Branard St., Houston, TX
Empowered Watch Party, Lunch & Discussion Dallas, TX Friday, October 23, 12 – 2 PM
Center for Community Cooperation, 2900 Live Oak St., Dallas, TX 75204
On Friday October 23, 2015 The Afiya Center will join Positive Women Network US and other advocates and women centered groups and allies to bring awareness to how women living with HIV are affected by violence and working to end it. We will be viewing Empowered: Women, HIV & Intimate Partner Violence is a new campaign from Greater Than AID. The campaign features Michelle Anderson-Morrison, Dallasite and national advocate for women living with HIV. We welcome you to come and participate in this local national day of action to Speak Out…Ending Violence Against Women Living With HIV….
***lunch served…please RSVP to Donna Wilson 214-900-4347 by 10/20. Click here for more info and to RSVP on Facebook!
“Morning Ruckus Raising” Boulder, CO Friday, October 23, 8 – 9:30 AM Boulder Municipal Building (Broadway & Canyon)
(see flyer below for more info)
“Afternoon Ruckus Raising” Denver, CO Friday, October 23, 3 – 5 P Corner of Colfax & Broadway
At 5:00 PM we’ll encircle the state capitol in a show of solidarity. (see flyer below for more info)
Empowered Watch Party + Panel Discussion
Oakland, CA Friday, October 23, 1:30 – 3:30 PM
New Parkway Theater, 474 24th St., Oakland
Yesterday, June 5, marked the first annual National HIV/AIDS Long-Term Survivors Awareness Day. Those who have lived several decades with HIV have advocated, fought, survived, thrived, faced immeasurable loss. This includes longtime supportive allies, activists, care providers and family members, who are every bit long-term HIV survivors in their own right.
On this herstoric day, we asked PWN-USA members who’ve been living with HIV for more than 20 years to share how they’d want to see this awareness day acknowledged in the U.S.
Helen Turner Goldenberg, Texas; Diagnosed in 1984
I was diagnosed on March 13, 1984, with what they called “full-blown AIDS.” I was an assistant vice president at Bank of America in San Francisco. Fast forward through many challenges, through many illnesses, through medications where either you died or you didn’t, to watching my employees as assistant vice president at Bank of America, 11 of them diagnosed, dropping like flies around me — but I’m still here, in 2014.
It’s a new thing we’re doing. It’s the first year that we’ve had Long-Term Survivor Day. They’re saying Let’s Kick Ass — because the bottom line is, to me, we should be looking at this day and acknowledging, celebrating, thanking, congratulating, those that are still here doing this work. Because after getting over my big nonconfront, a whole bout with agoraphobia, a whole bunch of stuff, after getting through all of that, I’m still here, and excited to do the work. Because I don’t want anyone to have to go the trail that I had to go through! I have the experience and can help them not to have to do that.
So just acknowledge that day. Acknowledge me, congratulate me: I’m still here, in the fight, and I want you to do well! I don’t want you to ever have to go through anything that I went through.
Pat Kelly, South Carolina; Diagnosed in 1985
I happen to be a long-term survivor — this year is 29 years for me. And I would love to see this day acknowledged by people that have been living a long time with HIV, to be able to tell the message that HIV is no longer a death sentence. I’m here all this time because of great medications, great care and being a great advocate for myself. Being a part of PWN-USA has really helped me to further my education and my knowledge and to know that I should be honored! All those people living 20-plus years should be honored. Long-term survivors should be very much aware that we make a statement just by living our lives.
Tammy Kinney, Georgia; Diagnosed in 1987
I’ve been diagnosed for 28 years. I got diagnosed in October 1987. And I am a long-term survivor.
I want people to understand and get educated that we are living with this virus, that it is not a death sentence. When the virus first came out in the early 1980s, even health care workers were telling people that they were not going to be living past 5-10 years. But I am a testimony, along with other voices out there, that you can live. This virus is controlled through medication and awareness and education and motivation and empowerment. We can live with HIV.
Susan Mull, Pennsylvania; Diagnosed in 1993
I am just so delighted that this is the first fabulous National HIV/AIDS Long-Term Survivors Awareness Day — I was diagnosed in 1993. How amazing is that? I didn’t even think I would live to be a grandmother. That’s amazing!
But for me, personally: I would love to have some kind of really cool thing in every community where there are women living with HIV, to maybe have at a convention center parties and acknowledgements or big banners! Or posters, billboards along highways saying: “We love our mothers, we love our sisters, we love our aunts, we love all the women who have nurtured us, and this is National HIV/AIDS Long-Term Survivors Awareness Day, and we honor them all — we stand on their shoulders!”
I’m a little bit weepy right now because so many of them have died.
And also, this history-geeky part of me would love to acknowledge women who, early on in the movement, as early as 1981 — with the shift in the naming of what people used to call GRID which became named AIDS, and some of the people diagnosed early on that are still living, after 30 years, can you believe that they’re still living — women that did a lot of the research and the academic work to put together a lot of the movement kind of things that happened with ACT UP early on: I would love even more done to honor those women who poured so, so much of their lives into the movement. It meant everything to the rest of us to have people early on, when everyone was so discriminated against — this whole movement was just not a beloved movement around the world, and there weren’t so many of us together, PWN-USA didn’t exist, a lot of us were not diagnosed or not as savvy or not as aware then.
Those early women, those early historians, those early activists, let’s put them on a United States postage stamp. Amen!
Linda Scruggs, Maryland; Diagnosed in 1990
I think that if I look at how do we celebrate or acknowledge or bring awareness to long-term survivors of HIV, it’s really to remind the world, the country, that not only are people living longer with HIV, we’re surviving and we’re thriving. I think that folks 20, 30, 33 years into this: I would like to see who they are! I would love for the U.S. and the world to be able to see that we’re not just the images that the media is used to showing of who we are. So I would love to see a campaign of just the faces of long-term HIV survivors.