They come from nearly every corner of the U.S. They are engaged in local communities and on the international scene. They include mothers, artists, a fugitive, a performer, and a drug smuggler. They are speaking out, acting up, and in some cases risking their personal safety and liberty.
They are the 16 HIV advocates to watch in 2016, and they inspire and humble me. It is such a privilege to share their stories with you and highlight their important work. Their twitter handles and other social media links are included whenever available; I urge you to follow them so these advocates can inspire you all year long!
This week we will showcase the U.S. activists and next week we will present 10 HIV advocates from around the world.
And now, it is my honor to present…
Big Bear Lake, California
Straight men living with HIV aren’t unicorns. They do exist. But being public about their status means facing an additional layer of ignorance. Joshua Middleton has every intention of changing that. “I’m putting a face on the heterosexual HIV positive male that is often silent in this fight against HIV,” says the 25-year-old Californian. “I want to show the world that there is always hope.”
Joshua has started his own blog, contributes to TheBody.com, and has dived into the HIV advocacy arena with vigor and youthful enthusiasm. He has become an avid supporter of PrEP, uses his fluidity in multiple languages to share HIV messages, and wants to pursue a law degree for the express purpose of defending those being unfairly prosecuted by HIV criminalization laws.
“He is a loving soul,” says Maria Mejia, the popular social media personality and HIV positive advocate. “He represents a new generation of activist and I am always so proud to see a young heterosexual male stepping out of the HIV closet.”
“Sitting on the sidelines is not an option for me,” says Joshua. “I’m going to be a driving force until the day when HIV becomes yesterday’s news.”
Winter Haven, Florida
The Positive Women’s Network USA (PWN USA) could easily generate an activist list of their very own, considering how ferociously powerful the organization has become in recent years. One advocate who has benefited from their inspiring female power is Floridian Kamaria Laffrey.
“More and more women are coming out of the shadows,” Kamaria says, “and helping to break down misconceptions of HIV.” Her work with PWN USA, We Make the Change Florida, and as part of a strategy team with The SERO Project to repeal criminalization laws, is keeping her schedule brimming with advocacy activity. “I am continually fueled to find ways to share purpose beyond pain when issues of criminalization, reproductive injustice, and overall stigma prevent people from seeking treatment, staying in care and living the abundantly full life they deserve.”
Kamaria credits her religious faith for getting her through her diagnosis in 2003.
“Being a woman of faith has often made me feel torn in what I view as a really sensitive culture. In the faith arena, I feel that many layers of HIV aren’t addressed, just those that feel less controversial,” she says. “And outside of the faith world, I sometimes feel as though I am not taken seriously because of my beliefs. But I have hope for change.”
In 2016, Kamaria will be focused on making her organization emPOWERed Legacies officially a non-profit, completing her book, Chasing Waterfalls, and making a mission trip to Haiti.
Tami Haught, the SERO Project Training Coordinator who led the fight that successfully updated Iowa’s HIV criminalization laws, believes Kamaria’s spirit may be her most valuable tool as an advocate. “Kamaria has so much energy, her smile lights up a room,” Tami says. “Her spirit and resolve are inspiring, and she is a power to be reckoned with in Florida.”
When you visit the Twitter page for Robert Garofalo, it isn’t really a page about him. It’s all about his dog, Fred. And that is the first thing you need to know about Robert’s activism.
The Professor of Pediatrics at Northwestern University has devoted his career to the care of HIV+ adolescents and has done a fair amount of HIV prevention interventions for young men who have sex with men and young transgender women. But let’s get back to the dog.
Robert founded Fred Says to raise money for agencies across the country that care for HIV+ young people. “I wanted to do something that was personal and creative,” says Robert, “and that tapped into the gratitude I had for my dog, Fred, who quite literally saved my life after my own HIV diagnosis in 2010.”
The photo essay project When Dogs Heal, launched in 2015, was the result. “Our hope was to change the narrative about HIV to be about love, hope, survival and thriving while living with HIV — all while giving credit to the healing powers of our pets,” says Robert. “Our hope in 2016 is to turn When Dogs Heal into a traveling art exhibit and to turn the project into a book.”
Charles Sanchez, the writer and star of the web series Merce, which features a lead character living with HIV, knows a little something about employing creative talents as an advocacy tool. “Sometimes a dog is more than just a man’s best friend, but also his best medicine,” says Charles. “Rob’s project has the potential to change people’s minds about what someone with HIV looks like. His work inspires me.”
All Cassie Warren wants for 2016 is a cute mobile van.
The Youth Health Benefits Counselor at Howard Brown Health Center is happy to explain, and with great persuasion, that a mobile van represents many of the issues relating to providing health care to young people. “I think if we want to make PrEP, hormones, and birth control more accessible to young people we have to reduce the number of things you have to do to get it,” Cassie says, “and we have to do it in a youth-centered environment. We have to bring it to them.”
But wait. Cassie isn’t done making her case. And she even broadens it. “There are a lot of folks out there who think young people can’t be adherent or don’t care about their health,” she says, “and those folks have absolutely no business providing care to young people. We need to look at the structural barriers and find ways to reduce and eliminate those.”
Cassie take her job helping young people navigate healthcare systems personally. “My work is rooted in a deep love for community and uplifting that love against systems that aren’t,” Cassie says. “Many young people experience trauma by the U.S. medical system. So, until we get real healthcare reform, you do what you can to create a safer space for folks to get what they need, and to feel celebrated and autonomous in their bodies.”
Jim Pickett, the HIV prevention advocate at AIDS Foundation Chicago who has a global reputation for innovation, is deeply impressed with his home town colleague. “Smart and tenacious, Cassie Warren is an advocate we all should be watching if we aren’t already,” Jim says. “Everything she does is rooted in a strong sense of community, social justice, and human rights. She’s equal parts thoughtful and fierce, and Chicago is so lucky she is here moving mountains!”
When Masonia Traylor tested HIV positive during a routine medical visit in 2010, she was simply shocked. She didn’t feel she was facing her own morality, though, as much as a “spiritual death.” She lived in such a state of anger, at having become infected, at every person she ever trusted, and even at herself as she second-guessed every choice she had made. It was a dark time that produced a surprisingly sunny advocate.
The 27-year-old mother of two has tremendous enthusiasm for her advocacy today, focused on population she relates to: youth at risk. It is widely known that in the United States, an estimated 1 in 5 people living with HIV do not know they are infected. What is less known is that among those living with HIV who are between 13 and 24, more than half do not know they are infected. It’s no wonder Masonia is so passionate about reaching them.
“Equipping youth with knowledge and awareness of the HIV/AIDS epidemic is what it will take to stop new infections,” Masonia says, who devotes her time volunteering for a variety of HIV agencies and maintaining an active presence on social media. “HIV is manageable, treatable, but most of all preventable.”
None other than the formidable Luvvie Ajayi, the social media sensation and founder of the Red Pump Project, believes Masonia has what it takes to deliver a message to young people. “Masonia has turned her pain into power by telling her story so others can know the faces behind the numbers,” says Luvvie. “She is one to watch in 2016 because her work is going to touch more lives and make more impact. I am so inspired by Masonia.”
Longtime HIV activists don’t always slip gently into the background after having made their contribution a generation ago. Sometimes advocates like Rick Rose get a second (or third) wind and re-dedicate themselves to HIV advocacy.
On World AIDS Day in December of 2015, Rick was so inspired by the work of the Philadelphia Center in Shreveport, Louisiana that “I officially recommitted myself to the battle,” he says. Rick has lived in Louisiana for eight years, but his own HIV advocacy goes back thirty years. As director of the AIDS Mastery Foundation in Los Angeles in 1993, he worked hand in hand with the first Miss America to have AIDS as a platform, Leanza Cornett.
“Like many of us living in the throes of the pandemic, I needed a break,” Rick says. “That break lasted 19 years too long.”
Rick is focusing his efforts on the health disparities common in the South, and the impact HIV is having on communities of color. And that means frank conversations. “The South can no longer hide behind congenial traditions and mock religious beliefs,” Rick says. He’s also looking forward to documenting the stories of people at risk in the South through podcasts and other new media.
Miss America 1993, Leanza Cornett, remains a fan and a friend more than twenty years after her reign. “Rick is absolutely one to watch in 2016,” says Leanza. “Even now, he is spearheading round table workshops focused on women of color and HIV. I am so proud of Rick and his work, then and now.”
Read next week’s SFGN for part 2 of this story.