‘Changing the Pattern’ in the fight to end HIV in the South

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On December 1, 2014, Landros Jones opted out of wearing the signature red ribbon associated with Red Ribbon Day or World AIDS Day. Jones, who was just shy of his 28th birthday at the time, had always worn a red ribbon in solidarity of those living with HIV since high school. The ribbon is an “internationally recognized symbol for AIDS awareness, worn by people throughout the year in support of people living with HIV and in remembrance of those who have died,” says unaids.org.

But that year was unlike previous years. Nine months earlier in late March 2014, he was a healthy, physically active and fit 3rd grade teacher in Carthage, MS. But he noticed that he was increasingly and frequently becoming tired. 

“I was so tired all of the time. And I went to a doctor who did not test me for HIV. I ended up being told that I had anemia,” says Jones. A few months later, on July 18, 2014, Jones went to a clinic to take a rapid HIV test after being told by a church member that he should get tested, and he found out he was indeed positive with the Human Immunodeficiency Virus. In retrospect, Jones believes that his earlier doctor’s visit was when he experienced seroconversion, which is the period during which the body starts producing detectable levels of HIV antibodies.

Jones remembers that, to further validate the clinic’s findings, he took a blood test that was sent off to a lab at the Mississippi State Department of Health in the Jackson Medical Mall. He was called to come in the following week. 

“It was a strange thing. Everything was strange. I get into this little room and the guy comes in and he says, ‘State your name, date of birth,’ and so forth. And the next words out of his mouth were ‘Well, your test came back positive. You have HIV.’ There was no compassion. There was no preparation for how he was going to deal with me as a person or approach me as a person. This is how people are being told they have HIV. I understand why there is stigma. I understand why people don’t disclose.”

Before and at the time of Jones’ diagnosis, he was heavily involved in his faith, but the burden of secrecy shrouded much of his daily life. From his attraction to the same sex to his advocacy for healthy sexual practices, including support for those wanting to be tested, he vehemently concluded that he must keep quiet so that no one in his church life or professional life would have room to draw any comparisons. 

Even before he learned of his status, when he was a music major at Tougaloo College, Jones worked in the institution’s Owens Health and Wellness Center filling up bags of condoms for students to be safe in their sexual practices, and he also drove students to discreetly get tested at locations off campus.  He believes that those instances built a desire in him to dedicate his life to helping others.

“The work was in my bones way back in ‘05-‘06. I worked out part of my tuition one semester in partnership with Dr. [Wesley] Prater at Owens Health [and Wellness]. Part of my work was stuffing condom bags and so forth. And I just remember having so much judgment and condemnation, being one of the saints.

“So fast forward to me receiving the diagnosis, and I’m now one of these people that I’ve been told about. And if anyone ever finds out, I’m done. No one can ever ever know,” expressed Jones.

So when World AIDS Day came around, the denial of his diagnosis prohibited him from celebrating in a similar fashion as years prior. The first year after Jones was diagnosed, Jones says he was a wreck. “I simply didn’t believe it. I thought I was going to shout it away. I was gonna dance it away. You weren’t gonna make me believe this.”

Jones received his first reality check when he learned of his viral load. “Reality set in when I went in for a medical appointment and I officially learned about viral load. And I learned about CD4. I was in trouble. My baseline was at 353 CD4. And that’s low.”

CD4 cell count, or T-cell count, is an indicator of immune (white blood cell) function in people living with HIV. A CD4 cell count at 200 or lower is the turning point for when HIV becomes AIDS (Acquired Immunodeficiency Syndrome). 

Jones began taking medication. He was prescribed Stribild – one of the first antiretroviral therapy (ART) options to hold four medicines in one pill, which is better known as a Quad. His medicine was sent to him every month from New Orleans by UPS so that no one in his vicinity would find out about his diagnosis. However, over time, Stribild is known to cause kidney failure and, in Jones’ case, he experienced stroke-like symptoms which led him to take his medication sparingly.

His health was put into jeopardy after he became ill in late 2015. He was a music teacher at Provine High School. He decided to clean out an old room filled with music books and literature that had been left unattended for years. According to Jones, the room was full of mold spores that he was exposed to, and later hospitalized with meningitis and encephalitis.

“I thought I was going to die. When I did recover, I promised that I was not gonna put anyone else or myself through that. And I would comply and be adherent. I would do what the doctors asked me to do, and I would be in charge of my own health first. That’s the promise that I made God and myself. And I kept it. I went from being what would’ve been considered a tragedy to getting back into learning. I went back to research.”

This is the point where Jones’ desire for community advocacy returned in full force. In 2016, he made the bold move to relocate from Mississippi to Kansas City, Missouri. At the time – though he feels differently now – Jones believed that he couldn’t accomplish his full potential in advocacy in Mississippi. In Missouri, he found, what he calls, a wonderful case manager – Susie Cables.

He was put back on the Stribild and then his doctor switched him to Genvoya, which is another Quad (4-in-1) medication. Though the latter medicine ballooned Jones’ weight an additional 70 pounds, he learned more about his diagnosis and how to cope. He had a therapist and attended peer sessions. He also learned one of the most important lessons in his advocacy journey – ​​U=U. This campaign underscores that “Undetectable = Untransmittable,” which indicates that “if a person with HIV is on HIV meds with a consistently undetectable HIV viral load, the virus cannot be transmitted to a sex partner.”

Unfortunately, as his health improved, the health of his mother, Nettie Ruth Jones, deteriorated. She was diagnosed with cancer in 2017. Jones moved back to Mississippi to take care of his mother but she succumbed to the disease in April 2018. 

Pushing through the pain of losing his mother, Jones was able to continue his advocacy in Mississippi. Jones became an independent consultant, starting a program called Speak Your Truth at the Jackson Medical Mall. Jones was also choir director for his church, and he then tacked on work at GA Carmichael Family Health Center as a medical case manager for the Ryan White program. 

Ryan White was 13 when he received a blood transfusion from someone with HIV in 1984. Though he didn’t live to graduate high school, his mother’s advocacy on his behalf is still going strong through the Ryan White HIV/AIDS Program that gives support to minorities and low-income individuals living with HIV/AIDS. 

Now, Jones is the U=U Outreach Coordinator for the Prevention Access Campaign. They are a part of a larger partnership of local community organizations who are geared to tell their stories and display the stories of others as a part of the National AIDS Memorial and Southern AIDS Coalition’s Change the Pattern initiative. 

This initiative is bringing the AIDS Memorial Quilt to the Jackson area Sept. 28 – Oct 4 to reimagine the fight to end HIV in the South. The weeklong quilt display and programming, funded through the support of Gilead Sciences, aims to raise awareness about health disparities and social justice issues that continue to disproportionately impact communities of color. 

The AIDS Memorial Quilt was an idea conceived by another Jones – human rights activist Cleve Jones – in November 1985. While planning the 1985 march in commemoration of the assassinations of gay San Francisco Supervisor Harvey Milk and Mayor George Moscone, Jones learned that over 1,000 San Francisco residents had died of AIDS. He asked the participants to write the names of friends and loved ones who had died of AIDS on placards, and at the end of the march, they taped the placards to the walls of the San Francisco Federal Building. That wall of names took on the form of a patchwork quilt. 

The idea for a larger memorial took shape. In June 1987, Jones created the first panel for the AIDS Memorial Quilt in memory of his friend Marvin Feldman, and in October of the same year, the quilt was displayed for the first time on the National Mall in Washington, D.C., during the National March on Washington for Lesbian and Gay Rights. Covering a space larger than a football field, the quilt included 1,920 panels. In 2022, in its entirety, the AIDS Memorial Quilt weighs 54 tons with almost 50,000 panels dedicated to approximately 110,000 individuals.

Parts of the quilt will be displayed at the Mississippi Civil Rights Museum, Jackson Medical Mall, Jackson State University Student Center, local churches, City Hall, Capital City Pride, and other locations across Jackson and the Delta.  

Accompanying the quilt’s more than 500 hand-stitched panels will be powerfully curated stories that share the love, remembrance, pain, and celebration sewn into each quilt panel of lives lost from within the Black, Latinx, indigenous, transgender, and other marginalized communities. Several new quilt panels from Mississippi will be part of the exhibition, including ones honoring Jackson State University professor Dr. Mark A. Colomb, a beautiful panel for residents who were cared for at Grace House, 14-year-old Hemophiliac Michael Felton (who’s story is similar to Ryan White’s), and Lavadious Walker (who was celebrated in the trans community). A panel made by legendary civil rights and justice activist Rosa Parks, who was a supporter of the AIDS Quilt, will also be featured in the display. 

“The quilt has always been a powerful teaching tool for justice, advocacy, and service and we are honored to bring its stories from the Black and Brown community to share with Mississippi through these displays and programming,” said Duane Cramer, who oversees Quilt Community Engagement for the National AIDS Memorial. “We hope that these funds will help support HIV/AIDS organizations that continue to provide critical care and services for those in need.” 

Also, throughout the week, community partners will host free educational forums, health screenings, advocacy, and quilt panel-making workshops. Programming will include conversations on topics of importance to the community: health disparities, rising HIV diagnoses, environmental justice, and the stigma that persists today in the long struggle for health and social justice in the South.

Local community partners for the Mississippi Change the Pattern Quilt display and events include: AIDSWatch Mississippi, My Brother’s Keeper, Capital City Pride, Care4Me Services, AIDS Services Coalition, Community Health-PIER, Jackson Medical Mall, The She Project, Love Inside for Everyone, Mississippi Center for Justice, Jackson State University, Mississippi Department of Health Office of STD/HIV, Two Mississippi Museums, and Visit Jackson, among others.

“Bringing the AIDS Quilt to Mississippi is particularly important as we work together as a community to reimagine the fight to end HIV in our state,” said Robin Webb, Director of AIDSWatch Mississippi. “The Quilt helps open hearts and minds to those we’ve lost and how we can use those stories to educate, advocate, and finally end this epidemic.”

The statistics speak to the importance of the Change the Pattern initiative in the South.  In 2020, the South comprised 38% of the U.S. population but represented over half (52%) of new HIV diagnoses. Black/African American people made up 42% (15,305) of the 36,801 new HIV diagnoses in the U.S. and dependent areas in 2019. 

The disproportionate burden of HIV in the South is experienced among certain populations, such as Black women, Black and Latinx gay and bisexual men, and Black and Latinx transgender women. Georgia, Louisiana, Mississippi, Texas, South Carolina, Alabama, North Carolina, and Tennessee rank in the top 15 with the highest rates of HIV in the country. Racism, HIV stigma, homophobia, poverty, and barriers to health care continue to drive these disparities.

Landros Jones states that individuals having sex should get tested every six months, whether they are married or not. Individuals who have multiple sex partners should get tested every 3 months. With a hope-filled voice, he looks forward to adding a panel to the quilt in memory of a dear loved one who he believes died of AIDS.

The Change the Pattern initiative has also created a $100,000 relief fund to help area HIV/AIDS service organizations impacted by the ongoing water crisis. The relief fund will provide critical resources to help constituents who have been affected and in need of care and services.

The public is encouraged to visit www.changethepattern.org for detailed information about Quilt display locations and programming, all of which are free to the public.

DeAnna Tisdale Johnson has stepped into the role of publisher of her family legacy, the Jackson Advocate. Since March 2020, she has led the publication to once again become an award-winning newspaper with a new logo and website to boot. She is a Jackson native, graduating from Murrah High School and Tougaloo College. She is also classically trained in vocal performance, and, though she’s never broken a glass, she’s known to still hit a high note or two.

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‘Changing the Pattern’ in the fight to end HIV in the South

By DeAnna Tisdale Johnson
September 22, 2022