amfAR’s EPIC VOICES
What would a cure mean for the millions of people living with HIV today?
amfAR’s Epic Voices is an online video series that aims to reenergize the response to HIV among Millennial and LGBTQ communities. The campaign aims to renew awareness of the persistent threat of HIV, the urgent need to support HIV research, and amfAR’s leadership in the search for a cure.
amfAR spoke with a small group of influential members of the LGBTQ and HIV/AIDS community across the United States, and asked them to share their unique journeys, their personal insights on living with HIV, and the bold steps they have taken in the fight against the epidemic.
We hope their stories inspire and motivate you to be a part of something EPIC – the end of HIV.
“Everybody was sharing needles…this is not good. It just took one person to have HIV for it to spread very quickly.”
Brittany Combs is on the front lines of the nation’s battle against the opioid epidemic as the Public Health Nurse for the Scott County Health Department in Indiana. Combs implemented the state’s first needle exchange program when Austin, IN, became the epicenter of an outbreak in 2014 of over 200 cases of HIV and hepatitis C related to injection drug use.
“HIV is a highly misunderstood virus that carries terrible associations. It’s something that can be weaponized by society against you…That’s part of what drove me to come forward and tell my story. I wanted to help positively change the way people perceive HIV--so it wouldn't be used against those of us living with it.”
Regan Hofmann works for the Joint United Nations Programme on HIV/AIDS (UNAIDS). She was formerly editor-in-chief of POZ magazine. Her memoir, “I Have Something to Tell You,” published in 2009 by Simon and Schuster, chronicles her first decade of living with HIV. An advocate for people living with HIV for almost 20 years, she continues to educate people about HIV in the hopes it will be properly understood: as a disease that can, and does, affect every kind of person, everywhere in the world.
Paul Volberding, M.D.
“We know we can’t cure HIV unless we try, and we think it’s time to start trying. So we are right now gearing up for some very ambitious, complicated trials using some novel treatments.”
Paul Volberding is the Director of the amfAR Institute for HIV Cure Research at the University of California, San Francisco (UCSF). He is also a professor in the Department of Medicine at UCSF and director of the Center for AIDS Research at UCSF and the Gladstone Institute of Virology and Immunology. Trained in medical oncology, Dr. Volberding became involved in AIDS at the very beginning of the epidemic while at San Francisco General Hospital, where he founded the first inpatient ward for people with HIV/AIDS. Known as a pioneer in the treatment of HIV/AIDS, Dr. Volberding worked on early clinical trials to evaluate antiretroviral therapy in HIV infection.
“It’s time to end this. It’s time to bring a cure, to have a new life, a new beginning for the youth.”
Viktor Luna is a fashion designer based in Los Angeles. He was a contestant on season 9 of Project Runway and Project Runway: All Stars in 2013 when he disclosed his HIV status. Luna wants to continue using his platform to raise awareness of HIV and stigma within the Latino community.
“A cure opens up a lot of possibilities for people living with HIV that are fundamentally about expanding our human rights and dignity.”
Naina Khanna is a human rights activist and HIV/AIDS advocate. As the executive director of Positive Women’s Network USA, a national advocacy organization, Naina helps women and transgender individuals living with HIV fight for a world where they “can live long, healthy, dignified, and productive lives, free from stigma and discrimination.”
“A handful of us realize the advancements from 1981 to now. Understanding that we’re on the cusp, we have to work even more diligently.”
Daniel Driffin is an HIV activist and co-founder of Thrive SS, an online support system that builds networks around the country for black gay and bisexual men living with HIV to help them achieve viral suppression and address other needs facing men of color. In 2016, Driffin gained national attention when he was chosen to speak at the Democratic National Convention, the first out HIV-positive speaker at the DNC in 16 years
“As research scientists, we come in every day, and oftentimes we fail. But what keeps us going day after day is an optimism that by coming in and doing the absolute best we can, one day we will be able to arrive at a cure.”
Judd Hultquist is an HIV researcher at the University of California, San Francisco, and the Gladstone Institutes. He is also the recipient of one of amfAR Mathilde Krim Fellowships in Basic Biomedical Research, which support bright young scientists seeking innovative solutions to HIV/AIDS. As a part of the LGBT community in the Bay Area, Judd’s commitment to HIV research was strengthened after seeing his friends go through the struggles of HIV infection.
“I had two choices…I could lie in bed and die, or I could fight and survive. I chose to fight.”
Maria Mejia is an HIV/AIDS activist and peer educator in Miami, a city with one of the country’s highest per capita rates of HIV infections. A difficult upbringing in a Latino household and an HIV diagnosis at 18 years old led Maria to use her voice to become an HIV advocate and educator. Her biggest impact is on social media, where she provides a bilingual forum on YouTube and Facebook for thousands of people with HIV.
“I live my life out and proud… and each day of my life is a celebration.”
Ryan Palao, whose stage name is Ongina, is a drag performer. He was a contestant on season 1 of RuPaul’s Drag Race, where he emotionally disclosed his HIV status after winning a challenge on the show. As an HIV-positive gay man in Los Angeles, Ryan uses his platform as Ongina to be an advocate for equality, HIV/AIDS, and trans rights.
“I’ve been hearing so much about PrEP and prevention, that I was almost caught off guard. Someone’s still working on a cure...someone’s got my back.”
Teo Drake is an educator, spiritual activist, and long-term HIV survivor. Based in Greenfield, MA, Drake, who identifies as a queer man with a history of gender transition, is on the board of Transgender Law Center’s Positively Trans program.
“I’m ready for a cure; I’m ready to stop taking my pills”
Hydeia was born with HIV. She began her career as a speaker and AIDS activist at age 6 appearing on national television including “The Oprah Winfrey Show.” While she’s based in Las Vegas, Hydeia spends her time traveling around the U.S. educating people about HIV/AIDS, raising awareness, and fighting HIV-related stigma and discrimination.
“Finding out I was HIV-positive felt like this was my opportunity to spread a message.”
Ken Williams is a public speaker, AIDS activist and founder of the award-winning LGBT video blog, “Ken Like Barbie.” Diagnosed with HIV in 2010, Williams has dedicated his online presence to issues affecting people living with HIV, especially among communities of color.