Meet One Badass HIV Resistance Warrior

Reverend Deneen Robinson has always been a fighter dedicated to helping others. Two decades ago, she helped family members battle drug addiction and used her own experience with homelessness to propel her into a social work program at the University of Texas. 

Despite the grim prognosis Robinson received when she was diagnosed with HIV in the mid 1990s, she didn’t just lay down and die. Not even when one of her lungs collapsed during a bout of pneumonia caused by the “superbug” Streptococcus pneumoniae. Even though she was forced to temporarily give up custody of her two daughters while recovering from lung surgery, she refused to stop fighting.

“My doctor and I created a five-year treatment plan, which afforded me the best outlook as I looked to survive HIV,” Robinson recalls. She started on an antiretroviral cocktail of indinavir (Crixivan), lamivudine (3TC), and azidothymidine (AZT). While it knocked down the HIV, “the indinavir was causing lipodystrophy.” The redistribution of fat was a common side effect to many of the first-generation antiretroviral medications used to fight HIV. “I was also experiencing hair loss and lipoatrophy,” she says. The latter is the wasting that characterizes the end stages of the disease.

Dealing with side effects didn’t strand Robinson for long. She soon became a health educator for South Dallas Health Access, worked with AIDS hospice patients at Legacy Founders Cottage, and co-founded a Dallas women’s group called At the Kitchen Table to “create an environment where women could respond to their health challenges and deal with physiological issues, [like] isolation and stigma. I taught classes on every aspect of HIV, including medications, side effect management, resistance, and concomitant health issues. Although I have moved on to another organization working with women, the group is still active.”

Eventually, Robinson switched medications when other options came available. “I wanted a regimen that was less complicated,” she says, and her provider hoped the side effects would also lessen with different drugs. It wouldn’t be the last time she’d switch meds. Like many long-term survivors, Robinson has tried a number of different cocktails. “I have switched complete medication regimens more than five times,” she says.

It wasn’t always by choice. The HIV activist was almost permanently sidelined when she developed a resistance to her HIV medications. 

Robinson says hearing that she had, “developed a significant number of mutations,” almost killed her. Literally. She got the call while driving. “I was on the freeway on the way to visit a client in 2006,” she recalls. “I was shocked. I began to cry and I almost had a car wreck.”

“The office staff didn’t know that I would be shocked,” Robinson explains. “She shared the info with me as if I was already aware of the news. When I informed her that I was shocked, she immediately apologized and asked if I would like to come in for a visit with my doctor.” Robinson agreed.

Resistance can be frightening, because it means that certain drugs no longer work and the virus has developed defenses to the medication’s mechanism. Robinson developed a resistance to lamivudine, non-nucleoside reverse transcriptase inhibitors (NNRTIs), and most protease inhibitors. She met with her doctor and discussed her options. He learned of a clinical trial that might be able to help, and she bravely signed on.

She’s now on Prezcobix and Intelence and considers herself fortunate to have something that works. “My current regimen is a nuke sparing regimen because of the risk of kidney issues associated with Truvada. For now, this regimen is working.”

But, she acknowledges, “The risk of resistance is still a reality. Fortunately, the most recent medications have unique mutation markers,” which means she isn’t likely to already have a resistance to them. Once a person becomes resistant to a particular drug, they often have resistance to other medications in the same class (like all NNRTIs) even if they’ve never been exposed to those other drugs. 

In the past decade, Robinson hasn’t let HIV resistance hold her back from continuing to fight for herself and others. According to the Dallas Morning News, she’s been a consultant for the Centers for Disease Control and Prevention, The Well Project, and Black AIDS Institute. She’s worked as a community educator and a patient navigator for Project HOPE. Her activism has been recognized in local and national publications (including Newsweek and Dallas Voice) and honored with awards. 

Robinson says she received “a Lambda Legal Civil Rights Award … [for] work I did in creating and establishing a successful treatment education program in the Dallas area; one of the programs was At the Kitchen Table. The Margaret Thatcher Award was given for the work I did in creating innovative reconciliation work for the LGBT community in Dallas.”

Robinson has also become a writer herself, penning two columns (“Ain’t I A Woman” and “The Privileged Gardner”), being published in The Body and POZ, and serving as an International Abstract Review Committee member for the International AIDS Society.

The Reverend is now a mission coordinator for Living Faith Covenant Church, and a health and wholeness minister at The Fellowship of Affirming Ministries. She serves as the chair on diversity and inclusion for the Human Rights Campaign’s Dallas Fort Worth Steering Committee. 

Earlier this year, Robinson helped spearhead a rally for the Texas Black Women Rise Up Campaign, representing The Afiya Center, where she’s “creating opportunities to respond to the reproductive justice concerns of black women. We were in Austin for the Texas Black Legislative Caucus Weekend conducting a rally to [draw attention to] 11 harmful bills that would make it difficult or impossible for women to access reproductive healthcare in the State of Texas. We wanted to push the envelope to make the case for the negative impact these laws — if passed — would be even more harmful to the maternal health of black women specifically.”

At the time, Robinson told Spectrum News, “It is really important that women and girls, black women particularly, understand that they have the right to have families when they want, to participate in the planning, and also that they have all the resources necessary so that they can have the kind of families that they want to have.” Those sentiments are even more important as women’s reproductive rights are under attack across the country. 

But it’s a different kind of resistance that Robinson wants to remind people living with HIV about. “Understanding the science of treating [HIV], understanding the medications you are prescribed, understanding your resistance risks and a commitment to adherence are key to successfully treating HIV.”