The Paradox of HIV Testing

June 27th marked National HIV Testing Day, an annual call to get tested and a reminder that there are more ways than ever to get an HIV test. Testing is available at local clinics, from your health care provider, at home, or from a local organization. For DC residents, The Women’s Collective (TWC) fills a need in the community by offering testing that is fast, free, confidential, and easily accessible to people who need it most.

About 1.1 million people in the United States have HIV, and 1 in 7 of them don’t know it (CDC, 2017). The District leads the nation in the rate of HIV infection, with the chance of a person ever being infected with HIV in their lifetime at 1-in-13 in the District, compared to Maryland, where 1-in-49 residents have a chance of being diagnosed HIV-positive. We are lucky to live in a world where HIV care management exists. If you do test positive, you can still live a long, productive, and fulfilling life.

The Women’s Collective promotes HIV testing. But the reality is it is testing with the goal of identifying new positives…and that means one more woman living with HIV. Enter the paradox of HIV testing.

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Hesitant to get tested? Here’s why you should.

Knowing your HIV status is important for your health. If you are living with HIV, you should start treatment as soon as possible. HIV medicine can keep you healthy for many years and greatly reduces your chance of transmitting the virus to others if you take it the right way every day. And if you’re HIV-negative, you can take steps to prevent HIV. It’s important to get an HIV test at least once a year and more often than that, depending on your risk behavior and how much you may be coming into contact with HIV (potentially every 3 to 6 months). The Women’s Collective provides prevention recommendations and care management tailored to each individual’s specific risk and needs.

During our testing events for National HIV Testing Day, TWC staff spoke to several women about their motivation for getting tested and their testing experience. Here’s some common reasons:

  • Worry their partners may be engaging in high-risk behaviors. Several women said that they wanted to get tested because although their own risk behaviors were low, they weren’t confident in their partner’s’ behavior. For example, they were concerned their partner may have other partners. These women knew health and wellbeing was in the hands of just one person– themselves– so they took the test to put themselves first.
  • Concern about HIV contraction from sharing needles. Heroin drug users, who reflect the epidemic in the District, are at a higher risk for contracting HIV because of needle contamination. Several women who got tested were heroin users, and knew this was one way to reduce their harm. If you do use, be sure to get tested regularly and avoid sharing needles. DC-based agency, HIPS, offers free, clean syringes.
  • It’s quick and easy. TWC has an Outreach Team that goes out into the community and “pops up” for convenient testing via its mobile van. The testing van visits different locations throughout the city, so you don’t have to worry about traveling somewhere to get tested, or scheduling it. Testers found the new HIV rapid testing to be quicker and easier than they expected it to be!

Share your story

Do you have an experience with getting tested for HIV you want to share? What you share may inspire other women to take that last step to putting themselves first and choosing health and wellness.

  • What motivated you to get tested?
  • What obstacles and fears did you have to overcome to take the test?
  • How was your testing experience with TWC?
  • What would you say to someone who was considering taking the test, but unsure?

Leave a comment below or contact us on Facebook, Twitter, or Instagram.

“The passion you share for our work can generate a wider circle of change”

Dear Friend of The Women’s Collective,
We have much to be thankful for this holiday season and you are at the top of our list! The financial support you provide makes such a profound difference in our ability to serve women and girls in the Washington DC area.  For over twenty years TWC has provided a wide range of health and social support services, including mental health.
 
Despite changes in the health care landscape and the lack of resources available to community based organizations, TWC continues to make a difference in the lives of women, girls and their families.  Thanks to the incredible efforts of our staff, volunteers and friends like you, we remain committed to our community. 
 
As you celebrate with loved ones this holiday season, will you help us provide for families who are less fortunate? We hope you will consider TWC in your year-end giving during this holiday season. 
 
As you celebrate with loved ones this holiday season, will you help us provide for families who are less fortunate? We hope you will consider TWC in your year-end giving during this holiday season. 
Your donation can provide the following :
$10: Transportation to health and social services appointments.
$30: School supplies and a uniform for a child
$50: An HIV or Hep C test, a hot meal for a family of four
$75: Groceries for one week

$100: Individual and family therapy

You can donate by sending a check directly to The Women’s Collective, via Network for Good, or the Catalogue for Philanthropy. You can also help by inviting your friends and family to support The Women’s Collective.

The passion you share for our work can generate a wider circle of change,

thank you for your kindness and please stay in touch!
Sincerely,
 
Patricia Nalls
Founder/Executive Director 
The Women’s Collective
202-483-7003
“When I was at my lowest point, The Women’s Collective was there to not only lift me up, but to show me that I had a lot to live for.  I’m here today because of TWC!”
Donate Now
-Dana S (TWC client).

Fighting for Our Lives

After 25 years of providing HIV support services through The Women’s Collective to women of color living with HIV, Patricia Nalls reflects on how far we have come, and why we are still fighting for our lives.

Twenty five years ago, if you had told me I’d be leading the advocacy and fighting for the lives of women living with HIV in metropolitan D.C. area, I wouldn’t have believed you. I was young, married and in love, had three beautiful children. Then HIV/AIDS intercepted my perfect life, my American dream. Nothing can describe the feeling you get, when you are handed a piece of paper with a four letter death sentence – AIDS. Unless you have experienced the loss of loved ones, it may be hard to imagine the heartbreak I still feel for losing my husband and my youngest child to AIDS. But more than that, was the despair of being an insignificant statistic in the disease that was being called a “Gay Related Immune Deficiency.” 35 years into the epidemic, the face and the color of HIV has changed. In 2016, 1 in 4 people living with HIV are women. In the District, 9 out 10 women living with HIV are black. I can share my story because my grief and my despair gave me the strength I never knew I had, to fight for my children, and fight on behalf of women.

Twenty five years ago, I was newly diagnosed with AIDS, scared, lonely and stigmatized. Realizing that there had to be others like me, I started a secret women’s phone-support group that became The Women’s Collective (TWC). 8 million services later, we remain D.C.’s only agency that focuses on women as a “whole person.” As women often do, we take care of children, partners and parents, before we look after ourselves. Many a day our HIV status gets lost in the daily struggle of making a living. TWC is that essential safe space that offers women the services and support they need. We’re here to provide a space where women become empowered, and barriers to their healthcare such as food, transportation, child care, employment, housing…are eliminated. Most importantly, we help women find their voices to advocate for themselves to their family, their doctors, their political leaders, and their president. Right here in the nation’s capital, in the shadow of the Capitol and The White house, is one of the highest episodes of HIV in the country.

Twenty five years ago, as a woman, I was not allowed to participate in the first clinical trials for the first HIV medication, AZT. I have a vivid memory of that phone call, begging and crying to be included in the trial for the sake of my children who were about to become orphans. Today, I stand in our nation’s capital, representing women around the nation. I reflect on how far we have come and where we go from here. Scientific advances like Prevention against Mother to Child Transmission (PMCT) that could have saved my child; Pre-exposure Prophylaxis (PrEP), a pill taken just once a day to prevent HIV that could have prevented me from contracting HIV from my husband. National policies like the Ryan White Care Program, Medicaid and the Affordable Care Act (ACA) that have made it impossible for many women like myself to be denied insurance because of a pre-existing condition.

Today, in the face of a new administration, how do we protect our right to health? Can we raise our voices collectively to be heard in these uncertain times? Can we unite to fight for our lives? Why do we need to fight for our lives you ask? Because HIV is now a disease of the poor and marginalized; the same people dying of diabetes and heart disease, substance abuse and violence, are dying of HIV. Because the drugs and medical care to live healthy with HIV are unaffordable without Ryan White Services and ACA; Because women are still underrepresented in clinical trials. Because more black women are dying of HIV than any other affected population. We need to fight because HIV has to be stopped from killing black women.

Pat Nalls is the Executive Director and Co-Founder of The Women’s Collective. Her story launches our monthly blog series “Collectively Speaking.” Next, we want your stories of courage, survival and hope. We are uniting in the fight to save our lives, one story at a time. For more info: www.womenscollective.org

Welcome To Our New Location!

In July 2016, The Women’s Collective moved to 3230 Pennsylvania Avenue SE.  On September 6, the organization hosted a celebration to formally introduce our clients to our new office and drop-in center.   Executive director, Patricia Nalls, joined case managers and community health workers in welcoming clients into the space.  Intimate and lively as always, clients shared food, laughter, and reflected on previous experiences with their TWC family.  We’re in a new land but we’re offering the same brand; sharing our stories and saving our lives.

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A TWC Community Poem

At our monthly Positive Leaders Uplifting Sisters (PLUS) meeting, Mary Bowman led the group in writing a community poem. Each member contributed a line, producing a poem that reflects each member and the group as a whole.

PLUS Group Community Poem

The look of HIV has no face

And I love my life, I’ve accepted my life

I feel like HIV destroyed my life

HIV/AIDS won’t kill me

But denial equals death

HIV lives with me and brightens the road ahead of me

TWC is a place to feel free

Being positive doesn’t mean better days aren’t coming your way

HIV helps me with my health

I’m more aware of me  health since HIV came to my life

Positive people, sincere friends is my wealth

I was homeless with HIV

I live everyday to the fullest, not like it’s my last

Sisters helping sisters to survive

I’ve learned to accept the fact that I am HIV+

Having HIV doesn’t mean that I’m not free

I love myself more than the HIV in front of me

Y’all make me feel so good, so uplifting

Love and friendship is what make me healthy

Without you, there is no me.

My First Congressional Briefing

By Mary Bowman

For years, I have evaded the law and policy work in regards to HIV/AIDS advocacy. I have been discouraged due to the lack of attention given to youth and women living with HIV. I also have felt that I lack significant knowledge when it comes to policy, politics, and laws. However, the more I continue my journey of advocating through storytelling and art, the more “professional” advocacy flashes through my heart. As a young woman living with HIV knowing that there isn’t many like me that sit at the HUGE Ryan White Planning Council table I feel a great responsibility to fully serve as an advocate for those living with AIDS/HIV. Thus began my new role as Policy and Advocacy Associate with The Women’s Collective in Washington, DC.

I attended my very first congressional briefing held by AIDS United. I was extremely excited and overwhelmed with anticipation of what seemed to be a sort of “rites of passage” into the policy world. I expected to be in a large room with majority uptight, close-minded, older in age, and mostly white policy makers. To my surprise, the room was filled with young, mixed race, and eager congressional interns and fellows. Any nervousness that entered the room with me quietly left as I took the saved seat next to my executive director, Ms. Pat Nalls. She and Martha Cameron , policy and advocacy manager at The Women’s Collective, have supported me whole heartedly in my journey of advocacy.  The have also given me tools to use when in professional setting such as the congressional briefing.

Using my voice for the voiceless is one of those tools that I have learned mostly be experience. For example, during the congressional briefing a lot was said about the history of HIV/AIDS and the current state of challenges, growth, and communities most affected by the epidemic. It seemed as if the MSM population (which in truth is leading the infection rates in numbers) got most of the attention while women, especially women of color were mentioned in a whisper among the rest of the populations affected.  Though, we are blessed to have women like Pat who don’t hesitate to make sure women are receiving fair amounts of attention. During the question and comment portion of the briefing, Pat raised her hand and commented on the lack of representation of women, especially women of color, living with HIV.  I believe she was answered with a very vague and politically correct answer, but I am glad she pushed the panel to discuss women’s issues and also made the congressional staffers aware of the importance of including women in the discussions of the HIV/AIDS epidemic.

I am excited and ready for my new found interest in policy and advocacy. I am proud to be among the number of women representing for women living with and affected by HIV/AIDS. I see now the importance of sitting at the Ryan White Planning Council table to make sure that grant funding is being fairly distributed to our community and to organizations that support all people living with and affected by this epidemic. I understand the importance of being involved in the process of policy and law making and I am working every day to make sure the women I encounter are also aware of their importance at these tables.

Are We Not Worth It?

By Martha Cameron

As a woman living with HIV, who has experienced services from Ryan White Part D, I should join the throngs of individual women who are advocating for the continuation of Ryan White program in its totality, and the assurance of designated & quality access to treatment & care for women…

I am originally from sub- Saharan Africa, and had it not been for the existence and efforts of the Elizabeth Glaser Pediatric AIDS Foundation, I would not have been able to have my first HIV negative baby. It was still hard to access services and finds a good doctor to work with but this was understandable, considering the healthcare infrastructure in my country at the time.

As we relocated and attempted to resettle in the United States, I became pregnant again, it was easier to get services here than it was in Africa. What was shocking to find in the United States, however, was the amount of ignorance and stigma that I experienced when I was not at a dedicated HIV (Ryan White) provider.

The OBGYN that I initially saw not only felt that I had no business having babies as an HIV positive woman, but also strongly suggested tubal litigation (tying my tubes). Additionally when my baby was born, a nurse carefully put on a second set of gloves before she touched my baby.

Now being pregnant is already a stressful ordeal, but more so as woman living with HIV. There is an added level of stress that comes with taking extra care of yourself, as well as taking care of your baby. After the loss of my husband’s job, and therefore insurance soon after the bay was born, I was referred to a Part D provider. Part D service providers understood both my physical & mental state, and created a safe and comfortable environment for me; it was an environment where someone understood what you, as an HIV positive woman, and your family is going through. It also helps when someone understands why a hug and cuddle for you and your baby, and a listening ear is just as important as the antiretroviral therapy that you take. And no one even talks about the heterosexual man or husband for whom Part D has been a safe haven.

It has been well worth it, the greatest gift to a life that was otherwise hopeless; my marriage and kids are miracles. The research regarding the prevention of mother to child transmission (PMTCT), female condoms, and PrEP, work not only to ensure the sexual and reproductive health rights of women living with HIV, but also makes it possible for women living with HIV to experience the absolute joy of motherhood.

We are a family of an HIV negative man and HIV positive woman, an HIV negative daughter, and two HIV negative boys born to. We are a perfect Part D family.

The Women’s Collective is filled with many such stories. The Women’s Collective is a home away from home, and for many of the homeless women that we serve, the only home. Part D did not exist when the Founder of The Women’s Collective, Pat Nalls lost her little baby girl to AIDS. Part D exists because women like Pat Nalls & Elizabeth Glaser fought to ensure that other women would not have the same experience.

Nearly 9,000 HIV + women give birth in the United States every year. With this in mind, we have to ask how the consolidation of Ryan White Part C and Part D will help these women, and families such as mine; Will the consolidated Part C assure and maintain access to HIV care and treatment for women, infants, children and youth; will they receive the care and attention required to retain them in care by keeping them connected to their service providers. It’s the kind of care that has no barriers, bears no judgment and is greatly needed. Are we not worth receiving that type of care?