Category: Blog

I am my sister’s keeper. This upcoming Saturday, March 10, 2018 marks the 13th year for National Women and Girls HIV Awareness Day (NWGHAAD), when “national and community organizations come together to show support for women and girls impacted by HIV and AIDS.”^[i]  The lives and stories of women reflected in recent statistics underscores the continued need for the observance of NWGHAAD. According to the Office of Women’s Health, “about one in four people living with HIV in the United States is female. Only about half of women living with HIV are getting care, and only four in 10 of them have the virus under control.”^[ii] According to the Centers for Disease Control and Prevention (CDC), “of women living with HIV, around 11% do not know they are infected.”[iii]

For me personally, NWGHAAD is an opportunity to thoughtfully remember the women with whom I have served alongside since I began my work in the HIV movement in the early 2000s who have passed on (but, their names live on in my heart). On NWGHAAD, and as often as we are led, may each of us take a moment to speak the names of every grandmother, mother, aunt, sister, cousin, and female friend we’ve lost to HIV. May we honor the memory of these amazing, beautiful, courageous, and strong women with a renewed commitment to end the HIV epidemic in our lifetime. We currently have the biomedical, behavioral, social, and systemic tools to successfully prevent and treat HIV. So, let’s make ending the epidemic a reality.

While there is much for us to celebrate on NWGHAAD (such as the decrease in annual HIV diagnoses amongst women), we must not forget the disproportionate impact experienced by cis and transgender women of color.  According to the CDC, “among all women with HIV diagnosed in 2015, 61% (4,524) were African American, 19% (1,431) were white, and 15% (1,131) were Hispanic/Latina.”[iv] Moreover, of the 2,351 transgender people who were diagnosed with HIV from 2009 to 2014, 84% (1,974) were transgender women.[v] Amongst transgender women, in that same time period, 51% (1,002) were African American and 29% (578) were Latina.[vi]

Addressing issues specifically faced by cis and trans women of color remains critical to end the epidemic. Since joining the NMAC team last year, I have had the honor of discussing HIV prevention and treatment with several cis and trans women of color who are living with and affected by HIV. The adverse impacts of Internalized and externalized stigma are real, pervasive and crippling our ability to prevent and treat HIV in women, especially cis and trans women of color. Many cis and trans women of color are not engaging in meaningful conversations about their sexual health. Women of color as well as their providers often do not perceive women of color as being at risk for HIV. Women of color are being talked out of HIV tests and PrEP prescriptions by their providers. Some of these women are seroconverting despite their knowledge, willingness, and the availability of PrEP. Moreover, women are being diagnosed at more advanced stages of HIV with a higher viral load and lower CD4 count due to not being aware of their status earlier. Furthermore, women are less likely to achieve viral suppression than men. All of this is unacceptable.

It is within our power to change this unacceptable narrative. The conversations I’ve had with cis and trans women of color from across the country, but mostly with those from the South, have challenged and inspired me to continue collaborating in order to address the unique challenges women face that hinder their ability to access and/or utilize HIV prevention or treatment services. Several opportunities can and must be pursued to end the epidemic:

• Address unique challenges trans women of color face related to prioritizing their health care needs in a world wrought with interpersonal violence, threats of death, lack of healthcare access, housing insecurity and employment discrimination
• Address unique issues all women of color face related to prioritizing their health care needs while juggling family, work and other responsibilities
• Collect high-quality trans-specific data that accurately reflects the epidemic
• Develop/Scale-up culturally responsive and linguistically appropriate prevention and treatment interventions for cis and trans Latinas
• Educate providers about the importance of PrEP for cis and trans women of color
• Normalize (and de-stigmatize) conversations about sexual health and behavior.
• Recruit, hire, and equitably compensate cis and trans women of color to work in the HIV movement
• Rethink PrEP marketing for cis and trans women of color

Together, as a community, we can end the HIV epidemic in women. Our grandmothers, mothers, aunts, sisters, cousins, and female friends are counting on each of us to do our part! You in?

Yours in the Struggle,

Sable K. Nelson

[i] https://www.womenshealth.gov/nwghaad/about-national-women-and-girls-hivaids-awareness-day

[ii] https://www.womenshealth.gov/nwghaad/about-national-women-and-girls-hivaids-awareness-day

[iii] https://www.cdc.gov/hiv/group/gender/women/index.html

[iv] https://www.cdc.gov/hiv/group/gender/women/index.html

[v] https://www.cdc.gov/hiv/group/gender/transgender/index.html

[vi] https://www.cdc.gov/hiv/group/gender/transgender/index.html

Living with HIV for more than two decades isn’t keeping down. She’s now living her best life.

“HIV gave me a new birth with a new purpose to live and not just exist,” said Queen. “My life has changed for the good. I’m more honest and loyal than ever. It has opened my eyes to being healthy and staying healthy and educating others on the importance of being healthy.”

Prior to her diagnosis, Queen was a manager in hospitality and retail, “moving from state to state, running from myself; just existing but now I live with and on positive energy.”

Queen is currently a Clinic Office Associate for Positive Impact Health Centers in Georgia. There, she describes herself as “the face of the center.” She greets all incoming patients and guests, schedules appointments, and handles patient billing.

She’s also a committed volunteer and community speaker, working with organizations like Harlem United, AIDS Atlanta, and the Atlanta Policy Academy. And she’s happily married to her husband Terrance and the proud parent of two Yorkies, Lady and Rolex.

She’s also a participant in NMAC’s Building Leaders of Color (BLOC) program to train new leaders in the fight against HIV.

“NMAC has given me the knowledge to understand the language at board meetings, how to represent and speak up for myself and my community,” said Queen. “They’ve taught me successful leadership skills, how to deal with stigma, and so many skills. I could go on and on.”

NMAC is honored to have Queen as part of our activist family. And we hope she will keep going “on and on” as a leader in the movement.

NMAC is launching a new Community Spotlight series of webinars for 2018. These webinars will celebrate and spotlight communities that bear greater burdens in the HIV epidemic but are often invisible or overlooked due to issues of race, gender, or gender identity.

The first entry in the series will be held Wednesday, Feb. 21, at 3:00 PM EST, in recognition of Black History Month. Reunited And It Feels So Good: Addressing Barriers That Fuel The Division of Ending The Epidemic (ETE) Planning in Black America, by Leisha McKinley-Beach, provides an overview of addressing HIV from a community perspective and will discuss the advocacy and awareness of HIV from Black leadership from the very beginning of the epidemic.

NMAC is proud to partner with the Black AIDS Institute to present this webinar.

More information about the Community Spotlight Series, including registration information, is available at www.nmac.org/webinars.

“We have heard time and again from many communities that face the greatest challenges from HIV that they want more visibility for their concerns and their needs,” said Paul Kawata, NMAC’s Executive Director. “NMAC is committed to ensuring that they are seen and heard. These webinars are just one of several new initiatives NMAC is undertaking this year to amplify all of the voices of minority communities in the fight against not just HIV but against racism and inequalities that help the epidemic to continue. We hope that everyone will join us to hear from both established and new leaders in the HIV movement and learn more about the issues we all face.”

by Matthew Rose, Policy and Advocacy Manager
Yesterday, in the halls of Congress, on the heels of the announcement a major budget deal, and on National Black HIV/AIDS Awareness Day, NMAC met with staffers from the offices of the Congressional Black Caucus. With a group of dynamic leaders and community members, NMAC helped to deliver an updated call to action, discussing the current state of affairs with HIV and its role in the black community. The session focused on the lived experiences of individuals and the people they work with who are living at the front lines of this fight with a clear call for some of the more basic needs that can help make a difference, like supportive housing, access to healthcare, and stigma free sex education.

The panelists explained where we have been and where science has led us as a community and country. We now know that if an HIV-positive person maintains an undetectable viral load in their blood, they can greatly improve their health outcomes and cannot transmit HIV. We also know how a pill taken regularly can prevent HIV but these interventions are slow to take hold in black communities. The panel asked for more support from congressional leaders, in both the form of legislation and raising voices of people sharing the truth about the effect of HIV on community and how to change the realities. We are at a tipping point, but it is a question of will. Will we have the strength and support from all levels to end to this epidemic?

*NMAC would like to thank the Congressional Black Caucus and Congressional HIV Caucus.

Teresa Sullivan is in a good place in her life. She’s married to a loving and supportive husband, is a devoted grandmother and great-grandmother, and has a dedication to her work as an HIV educator and community activist.

But she didn’t get to this place easily. Teresa overcame numerous personal and health care challenges to get here.

Teresa has been living with HIV for 23 years. At the time of her diagnosis, she was in an abusive relationship.

“He told me no one else would want me because of my HIV status,” said Sullivan. “At the time, I was glad that there was someone I thought would love me unconditionally even though I had HIV.”

When she tried to leave her abuser, he filed criminal charges against her that led to her incarceration. He would visit her in prison and tell her he would drop the charges if she would come back to him.

“I got involved with an intimate partner violence support group while in prison,” said Sullivan. “That helped me learn to be strong enough to say ‘no’ to him and mean it.”

When her abuser missed all of Teresa’s court dates, the charges against her were dropped.

But Teresa’s challenges didn’t end there. Seven years ago, her only child was shot and killed while trying to break up a fight in his neighborhood.

“To honor his life, I’m an advocate to end gun violence in my community here in Philadelphia,” said Sullivan.

Today, Teresa is a leading HIV educator and activist. She is Vice Chair of the board of directors for National Positive Women’s Network–USA and a senior member of the Philadelphia Affiliated chapter. She is also a graduate fellow of the Black AIDS Institute.

As an Adherence and Mobilization Navigator for NMAC’s 50+ program, Teresa trains other people living with HIV/AIDS in how to begin a dialogue about Treatment as Prevention (TasP) in their own communities.

As a community organizer for the Support Center Prison Advocacy, Teresa spearheads outreach into communities most impacted by the crisis of mass imprisonment and helps organize neighborhood level steering committees to address specific reentry needs for those returning from prison.

Currently employed by Philadelphia FIGHT, Teresa is Co/Coordinator for its signature programs TEACH Outside and Women TEACH. Both programs are five week adult treatment education and activist training course for HIV-positive persons recently released from prison and other hard to reach communities. Teresa advocates for HIV-positive persons who are being detained in the Philadelphia Prison System. Upon their release, she helps link them into the life-saving services and resources they need for a successful reintegration back into their communities.

Despite her busy life, Teresa works on her self care.

“I believe in holistic wellness, mind, body, and spirit,” said Teresa. “When it comes to my self care, I practice mediation and have a healing temple to help with my healing process in life.”

We hope that healing temple keeps Teresa healthy and happy for many years to come. And we hope that she remains a leader and advocate in the HIV movement for all of those years.

February 7, 2018 marks the 18th year for National Black HIV/AIDS Awareness Day (NBHAAD), a national HIV testing and treatment community mobilization initiative targeted at Blacks in the United States and the African Diaspora.^[1]  Founded in 1999 as a national response to the growing HIV and AIDS epidemic in Black communities, NBHAAD 2018 presents the opportunity for those who have held communities together, spoken truth to power, demanded higher quality services, and advocated for better access to treatment/prevention to help us achieve the end of the epidemic in our lifetime.

We are more than 30 years into the HIV/AIDS epidemic and the Black community remains under siege. Of the estimated 1.2 million people living with HIV/AIDS in the U.S., nearly half (498,400) are Black.^[2] While the U.S. remains 12 percent Black, our community accounts for 45 percent of new HIV diagnoses.^[3] Blacks also account for 44 percent of the HIV-related deaths.^[4] The burden of the HIV/AIDS epidemic continues to primarily be felt by Black cis women, Black transwomen, Black youth, and Black gay and bisexual men.

These numbers have been slow to change despite a new era where options for and access to prevention and treatment have never been better. Scientific breakthroughs have made it possible for us to now live in a world where maintaining an undetectable status can extend a person’s lifespan and makes it nearly impossible for one to transmit HIV to another person. Moreover, there is now a pill that when taken daily can prevent HV transmission. However, the Black community continues to lag behind in achieving viral suppression and using PrEP/PEP.

Each of us has the responsibility to show that it is the will of the people to change what it means to think about HIV in the black community. NBHAAD 2018 should be the moment where the black community changes our conversation about the disparities we see in HIV and articulates a real vision of health equity and justice. Our country should be a place where health outcomes are not based on race and place. Everyone can reach this grand destiny. The transformative power of our community can be unleashed to reimagine our health.  In this moment, we can recommit to an intersectional fight that seeks to end this epidemic by improving the health outcomes of our community. That means more access to insurances, increased use of medical care, more affordable housing, increased levels of  education, and more  employment with social mobility. The nature of the necessary changes challenge the way that systems and institutions think about and support one another. Moreover, the systems and institutions that claim to support our community must reorient how they think of our community. Systems and institutions must provide us with what we need to help everyone move forward.

The nation has been focused on the achievements of black women recently and, in the case of HIV, we would do well to follow their trail. It’s one that has seen the first significant decreases in new diagnoses of HIV for black women. It’s one that has seen record numbers of treatment services to be expanded to think of the holistic needs of an individual’s. It’s one that has some of the biggest congressional champions on the HIV front in the form of Congresswomen Lee and Waters. We need to drive similar outcomes and champions from all levels of our community that are touched by HIV. The black cis women have shown a possibility model. However the rest of our community must be equally tireless in our resolve to achieve similar levels of success. That commitment will lead all of us towards a path to the end of the epidemic. Yes, on this year’s NBHAAD we must continue the course and the promise of a future that millions have given their lives in services of. We are about to approach a point where we are closer to the end of the epidemic then we are at the beginning in many metrics, but the this has all been balanced on a delicate map. And in this moment we have to push together collectively to realize the promise that Black women have shown us is possible for our community. That, as always, is our collective strength that has helped us overcome and shaped reality that has made our community better.

On NBHAAD 2018, we must reflect, (re)commit and (re)think how we approach HIV prevention and treatment. May we celebrate how far we have come and look ahead with passion and hope towards the places that we still must go. We must ask new/different questions that facilitate the evolution of our understanding of this epidemic, such as:

How can we invite in the missing people from the conversation,

• How do we identify the missing markers, the lost gaps and missed opportunities that could change us?
• How do we meaningfully engage community members who have not felt or seen advances in prevention and/or treatment?

In these uncertain times, the answers to these questions will shape the way forward. Personally, lend your voice to the chorus that is calling for and creating change so together we can say:

• We promptly answered the call when it was time to end the epidemic in our community
• We found a way to continue to uplift our community and accelerate the end to this epidemic
• YES, the reality of prevention and care was truly be realized in our lifetime

The world is waiting to see if we can work together to make ending the epidemic a full reality. Stand with NMAC to build a bridge to our liberation.

Matthew Rose
Policy and Advocacy Manager
NMAC

^[1] https://nationalblackaidsday.org/about-us-2/

^[2] https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

^[3] https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

^[4] https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html

We create coded language to explain why people of color must work smarter, stronger, and be more organized than their white counterparts. Racism is baked into the mainstream’s beliefs about people with different skin colors.  It is unfair, but very real. White is seen as competent, while everyone else must prove their worth. This is the lesson that parents of color teach their children, also known as “driving while black.” To protect our children, early on we share life’s ugly reality that the world isn’t fair. Your skin color can get you killed.

As a national “minority” organization, NMAC pays this tax on a daily basis. It’s part of why we push so hard. NMAC gets to comment on the unfair nature of the world because we are viewed as competent and reliable. We are viewed this way because we work harder, faster, and cheaper than our counterparts.

People may roll their eyes and see my writings as just another person of color whining about the world. The world is tough for many, while NMAC seems to be successful.  While I agree the world is tough for lots of people, people of color have to fight to prove our worth, while our white counterparts are assumed valuable until proven otherwise.

That nuance is central to why NMAC leads with race. In a movement that wants to end the HIV epidemic, we must come to terms with the impact that skin color has on health outcomes. Part of why NMAC works so hard to make USCA and the Summit stand out is to imagine a world where the color of your skin doesn’t matter. To prove that we are just as good.

In this Black History Month, NMAC is committed to our work to make that world a reality everywhere, not just within our space. And we hope you’ll help us get there.

Yours in the Struggle,

Paul Kawata
Executive Director
NMAC

*No government funding will be used for the Leadership Institute

These are confusing political times. New issues pop up every week. It’s difficult to separate our emotions from what’s good for the movement. Sometimes it doesn’t seem real. After a year of living in the new Washington, and at the request of Cynthia Carey-Grant from WORLD, NMAC is bringing back its Leadership Institute on Wednesday, September 5th, the day prior to the start of USCA. This year’s meeting will focus on How to Survive During Difficult Political Times. The Institute is for Executive Directors and HIV and STD Directors. Registration information will be posted online in March so please mark your calendar now. Our movement needs to talk, build mutual strategies and continues its important work to end the epidemic.

It might get worse before it gets better. 2018 may force some difficult discussions. I don’t know the answers. What happens if to pay for tax reform with significant cuts to discretionary nonmilitary funding? What happens if they cut entitlement programs? Medicaid is the largest payer of care for People Living with HIV. When you overlay the midterm elections, it is impossible to know which way this will go.

It could become easy to pick us apart when fighting for crumbs. People are rightfully very concerned. Now more than ever our movement needs leaders who can both fight and collaborate. Unfortunately, these qualities are not usually found in the same person. The Institute is a place to learn both how to have difficult conversations. Our leadership may be tested in ways that hasn’t happened since the early days of the epidemic. Money has a way of changing the discussions. Hopefully this will not come to pass.

NMAC invites new and long-term leaders to plan the Institute. Interested folks should drop an email at pkawata@nmac.org. All the work will happen via email and conference calls. You will need to cover your own travel and hotel to the Institute. This is a short-term project that will end in September 2018.

DEFCON
Like the DEFCON system, NMAC is considering coding our language so the field understands our level of concern. When everything is important, nothing becomes important. Most of the times we share the information because we want to inform the field. We are looking at a coding system so communications, e-newsletters, webinars, conferences, and printed materials set the right tone. We need to balance reality and not paralyze the field.

Phase 1: Thought You Should Know
Phase 2: Slightly Concerned
Phase 3: This May Be A Problem
Phase 4: This Is A Problem
Phase 5: DEFCON 1

“Collaborate and Fight” needs to be our movement’s mantra. We have to work with the Trump Administration to insure necessary services for people living with HIV continue. But what do you do when nobody is listening? This year’s Leadership Institute is looking for leaders who understand the collaboration is ideal, but we will fight if necessary. Let’s hope it’s not necessary.

Yours in the struggle,

Paul Kawata
Executive Director