We’re more than 35 years into the HIV/AIDS epidemic, and we have learned so much about this preventable, yet deadly disease. HIV/AIDS isn’t just a white gay man’s issue. But with the stigma and misinformation out there clouding our judgment, for every step forward we make, it often feels like we are moving several steps back.

To commemorate this year’s National Black HIV/AIDS Awareness Day on February 7, we asked folks in our community who are either living with HIV/AIDS, affected by the disease and/or work in the HIV field to drop some must needed knowledge. Here are their faces and here are their words.

“I want heterosexual African-American men to know that our participation and leadership is crucial to ending the AIDS epidemic in Black America. As teachers, mentors, fathers, and lovers, we must accept our responsibility and the accountability that comes with these roles in our homes and communities.” – Larry Bryant, New York, NY, Diagnosed in 1986

“We need to move beyond the tired, counterproductive routine of blame and shame. HIV transmission is, by itself, not something for which blame must be assigned, just like people living with HIV/AIDS shouldn’t be shamed for their status. Also, identifying someone as a “victim” naturally assumes that there must be a perpetrator, and HIV isn’t a crime; it’s a health condition, made fierce by stigma and ignorance. And it’s allowed to flourish in our communities by riding the coattails of poverty, patriarchy, unaddressed trauma, and white supremacy, as well as homophobia and transphobia. Blaming and shaming individuals because they’re easier to reach and exert influence on than policymakers, lets systemic forms of injustice off the hook.” – Olivia Ford, New Orleans, LA, Journalist, Contributing Editor, TheBody.com

“Like any other chronic health issue, HIV can be challenging to manage, BUT IT CAN BE DONE. I used to think that just my survival was good fortune, but that thinking changed over time. I started to see that it was my relationship with my doctor and my taking my meds that helped me live a life with well-controlled HIV. And I am THRIVING. So for Black folks out there living with HIV/AIDS or who have just gotten diagnosed, please know that you can LIVE with this disease and THRIVE.”  Shane J., Washington, DC, Diagnosed in 1998

“National Black HIV/AIDS Awareness Day is anything but a celebration. It is a grim reminder of how far we still have to go, and how hard we still have to fight. Our Black Lives will Matter when two things happen: One, when as a people we value our own lives enough to make education around HIV and AIDS a priority all year round. Two, when our nation confronts and conquers the hypocrisy of those who claim to cherish all life, placing greater value on fetuses than on living, breathing children, whose fates are far too often determined by the very absence of that which gives life purpose and value: education, health, safety and opportunity for growth and advancement.” – Waheeda Shabaaz-El, Philadelphia, PA, Regional Organizing Director for the Positive Women’s Network, Diagnosed in 2003 

“It’s just important to keep in mind that while HIV rates are declining among many populations, HIV is rising among Black gay and bisexual men—and we all need to care about that. These men are our family members, our friends and our lovers—they are you, and they are me. We must also understand that if we recognize all of this, we must also have a sense of urgency in addressing the structural barriers (housing, underemployment, access to health care, etc.) to prevention and treatment that further puts us at risk. And that can only happen when we ask those at the margins to sit at the table that makes the decisions. It’s time to be bold and inclusive, because clearly the status quo failed us.” – Amir Dixon, Boston, Mass., PrEP user since 2014

“I want to see Black people take ownership of HIV—YES ownership. And I don’t mean that in a negative or shameful way, but one that is about controlling our destiny. Because when one takes ownership of an issue, they then begin to put in place mechanisms to assure the best outcomes for that situation. Black people carry a disproportionate burden of HIV and have a shorter survival rate than any other racial or ethnic group. Therefore, ending HIV in the Black community must become a collective effort and not a targeted one that only focuses on Black gay men and heterosexual Black women. We all need to be alarmed at what is happening to us, ending the divisiveness, demanding that policy leaders stop playing politics with our lives and continue to advocate for ourselves. Because if we don’t save us, who will?” – Marsha Jones, Dallas, TX, Executive Director of the Afiya Center

“In 1996, my brother was diagnosed with HIV and he later died from complications due to AIDS. So I began doing HIV work to educate other families so they don’t have to suffer the same loss as I did. And from doing this work, it’s so important to stress that HIV disproportionately affects our community, with worse outcomes. Young African-American men and women are more likely to contract HIV and die from AIDS compared to whites. Obviously, getting tested and knowing your status is important, but so is getting and staying on treatment if you test positive.” – Justin Wooley, San Mateo, CA, HIV Advocate 

“Men, It’s time to step up and stand strong to protect your beautiful Black women! Ladies protect your body, ask questions and make sure you know the person you are with. Get tested together! If you are HIV-positive, it’s not the end of the world. In fact, it could be the start of a whole new world! Educate and take care of yourself and continue to strive for whatever you want! As an HIV-positive mother and wife myself, I am proof that your biggest dreams can be achieved!” – Lolisa Gibson-Hunte, Brooklyn, NY, Diagnosed in 2004

“I want my fellow brothers and sisters of color to understand that we have made strides with advances in prevention and treatment when it comes to HIV. The reality is that even though many of us are diagnosed with HIV, only a few reach viral suppression. Advances like pre-exposure prophylaxis (PrEP) prevents HIV infections when exposed to the virus. The work I do with Pozlifeofpatrick helps to show that living with HIV isn’t a death sentence; however, the stigma and complications I live with daily creates a life of ups and downs. I live my life one day at a time and step-by-step.” – Patrick Ingram, Northern Virginia, Diagnosed in 2011

“HIV/AIDS is still very much a real thing and the fact that we’re still a large percentage of the folks living with it in the U.S. is really frustrating. While the goal is the get to zero new infections, we’re not there yet. HIV is 100 percent preventable, but there are too many people who are still not aware of how to protect themselves or admit that they are at risk. Please don’t be that person.” – Tranisha Arzah, Seattle, WA, Diagnosed in 1990

By: Kellee Terrell

Kellee Terrell is an award-winning Chicago-based freelance writer and filmmaker who writes about race, gender, health and pop culture. Her articles and interviews have been featured in Essence, The Advocate, The Root, Al Jazeera, The Body, Hello Beautiful and The Huffington Post. Follow her on Twitter @kelleent