Keep on Talking
Doin’ My Drugs, a New Film About Raising HIV Awareness in Zambia & Starring Musician Thomas Buttenschøn, Asks the Question: Can Songs Save the World?
by Chael Needle
Photos by Adam Battaglia
Near the end of the documentary film, Doin’ My Drugs, Danish musician and pop star Thomas Buttenschøn stands on an outdoor concert stage in Lusaka, Zambia, and with the ease of one of his guitar strums, he speaks to the audience about living with HIV, about being healthy.
He had returned to his mother’s homeland to visit family, but he soon realized the story of his journey as an HIV long-term survivor needed to be amplified, rock concert-loud. In the course of a conversation with his relatives, he discovered they had no idea his mother had died of AIDS-related causes. Some of them thought malaria, some thought yellow fever, he says, calling from Denmark to share his thoughts for this interview.
He continues: “When I told them that and they didn’t know, that was quite a big shock.” He had a moment of perspicacity. If you can’t tell the people you love and who love you about your status because you fear what they might feel about you…. “That’s when it clicked for me: I have to tell my story and I have to tell people that it’s not their fault; it’s just bad luck if they catch the virus.”
On stage, at the “Zed Me Free: A Concert to End HIV,” which took place on November 28 in time for World AIDS Day, he shares with the audience what he shared with his family. He is “living proof”—living with HIV and living well is not a contradiction.
Born in 1985, Thomas acquired HIV through vertical transmission (formerly named, mother-to-child transmission) and was diagnosed positive as an infant. He is now and for a long, long while has been undetectable thanks to taking anti-HIV medications. The virus has become untransmittable; his wife (at the time of filming) and two sons are HIV-negative.
For the day-long concert, he is joined by other musicians on the slate, all of whom support HIV/AIDS awareness: Macky 2, Mampi, Afunka, Chef 187 and B’Flow, among others. The crowd gives back the positive energy flowing from these musician-activists. On the surface it looks like any music festival, except each and every one of the audience members has tested for HIV in order to gain entry.
The Muchimba Music Foundation (MMF), the brainchild of Buttenschøn, who is a cofounder and spokesperson for the organization, initiated a nearly month-long testing campaign, in partnership with AIDS Healthcare Foundation (AHF) and the Roskilde Festival, that led up to this Test-for-Ticket concert and allowed 10,802 young Zambians to know their status. Those who tested positive (over 1,000) were engaged in care through AHF.
The need for Zambians to know their status is a pressing one. According to UNAIDS 2019 estimates, around 1.2 million individuals in a country of over 17 million are living with HIV/AIDS, which includes around 710,000 women (age fifteen and older) and 480,000 men (age fifteen and older). Around 85% of people living with HIV/AIDS are taking antiretroviral medications. Around 77% of people living with HIV have achieved viral suppression. New infections are falling year by year. Zambia is making headway in accomplishing the UNAIDS 90-90-90 goals, but more on-the-ground messaging is needed to dismantle resistance to testing and treatment and to normalize HIV health.
That’s why Buttenschøn goes on the radio, why he talks to journalists, why he keeps on talking to anyone who will listen—he knows others cannot be so open about living with HIV.
“Stigma is a huge problem for people who are infected. They’re scared to tell their story,” he says. “My dad, he lived with it openly. He wasn’t scared. He actually went on national TV; he was one of the first people to do that in Denmark, told his story and my story, so everyone around me has always known. For me, I’ve never felt ashamed. I never felt it was my mistake….” The film shows archival footage of his father on Danish television as well as clips of his parents and Thomas. And though we visit Thomas and his family in Denmark, we mostly see him, guitar in hand, connecting with people in Lusaka—family members, musician-activists, the press, people on the street, audiences. He is quiet and unassuming—approachable. Ready with a smile. Ready to teach and also ready to learn. His music deserves all the applause it receives. In one scene, he gives a preview of song to a DJ (“Keep on Talking”) and the DJ quickly hurries him on the air so everyone else can hear, too. (Check out the soundtrack with this track, a collaboration with B’Flow, and other great tracks.)
Buttenschøn is humble about his efforts, ever-dedicated to getting the message right. “To this day if I [realize] people are taking one step back because I’m HIV-positive, then I feel it’s because I have failed myself to tell how stuff works in a simple way so they can understand it.”
He repeats the basics of the message, as he might for others not in the know: “Do your medicine and your virus is undetectable; then you’re unable to pass this on….That’s something I want the world to know so we can get this eradicated completely….I mean, my kids are living proof that this doesn’t need to be the next generation. I believe that this virus should die with my generation.”
Along with guilt, shame, and stigma, which are buoyed in part by religious strictures and homophobia, gaps in accurate knowledge about HIV create an environment of fear for Zambians to navigate. Some of the misinformation is steeped in myth. For example, one of the musician-activists featured in the film, John Chiti, a person living with albinism and executive director of the Albino Foundation of Zambia (AFZ), has set out to stop the discrimination and (sometimes murderous) violence against people living with albinism, whose body parts are thought to bring prosperity or cure diseases. Some of the information that people have about HIV/AIDS is sorely incomplete. Like elsewhere in the world, many do not know that potent and lifesaving antiretrovirals are accessible, and many do not know that sustained treatment can suppress the virus to the point where it is untransmittable.
Says Buttenschøn about Undetectable=Untransmittable, or U=U: “That’s a global problem. Last year, on December 1, I was playing in China. I had a tour; we were playing around seven shows. Same thing over there. They didn’t know anything. And also when we started this journey nobody knew [about U=U] in Denmark. I believe it’s because of all the campaigns running in the ’80s and ’90s, where people were dying because there was no [treatment] at all. I believe these stories were so imprinted into people that they still believe that’s how the world is today. But a lot of things have changed since then, and I believe that the world needs to know that so they don’t infect others and, so, basically, they don’t die.”
The film, directed by Tyler Q Rosen and executive produced by Jake Glaser, evolved as Buttenschøn’s activism evolved; the Muchimba Music Foundation (which bears Thomas’s middle name and his mother’s maiden name) came into existence in the process.
Says Rosen of his friend Buttenschøn, who initially asked him to film his music performances: “Through his activism and me documenting it, I became an activist as well. And it just became natural for us to start MMF.”
Rosen, who became the executive director of MMF, had connections in Los Angeles that allowed him to launch it and square away the legal p’s and q’s. Then they were able to connect with someone who, like Thomas, acquired HIV through vertical transmission and survived into adulthood: Jake Glaser, a director at MMF and a longtime activist and ambassador at the organization his mother cofounded and helped build, the Elizabeth Glaser Pedriatric AIDS Foundation. His mother died of AIDS-related causes in 1994. His older sister Ariel also died of AIDS-related causes in 1988.
Glaser is enthusiastic about MMF’s idea to capitalize on Thomas’s music to reach a younger generation, not only through the film and soundtrack but also the innovative test-for-ticket strategy. While the HIV/AIDS community has achieved significant strides in medications and strides in prevention of vertical transmission and pediatric care (thanks in large part to the steadfast and highly successful efforts of EGPAF), notes Glaser, we need to do more to support adolescents.
“It’s wild to think about,” he says, “A lot of these kids that were born HIV-negative because of our work are now teens and becoming sexually active and there’s no education that’s there to empower them with the tools necessary to keep themselves healthy or to keep themselves from contracting the virus through another event in their lives.”
With the test-for-ticket strategy as a way to engage youth in testing and care, “we see an opportunity to activate a younger generation through incentives and through strategic marketing and through a lifestyle and an idolized individual, someone they can look up to, like Thomas, that really works in pushing them through that threshold from not knowing their status to knowing their status,” notes Glaser. “Then, once they know their status, we have the strategic partnerships through all the nonprofits that we partnered with through this documentary to make sure they not only have the treatment that they need and they can access the treatment, but psychosocial support, youth peer groups, and a massive network of indiviudals to show them that this community is strong and we’re big, and they’re not alone in their efforts and their challenges with HIV.”
Something like the concert may not automatically destigmatize talking about HIV or testing for the virus, or even recruit youth into lifelong healthcare engagement, but it does lead to more possibilities for empowerment and activism.
Concerts bring people together and unify them as a community, notes Glaser. MMF and others can build upon this enthusiasm. “For example, through one of the film’s partners, the Elizabeth Glaser Pediatric AIDS Foundation, we are actively training youth within these communities to be healthcare workers, to become peer counselors, and to become certified in these spaces, but to be much more broad about it, there’s not as much [youth-generated activism] as we need in the world right now and that’s a big reason why this message and this film is also such an inspirational and very poignant piece right now. It’s not that they can’t—they don’t know how. We have to put a tool in their hands that speaks their language, that represents their generation, that empowers them to do this themselves.”
Music has long been a tool in Thomas’s hands, for expressing his creative ideas, certainly, but also, from a young age, as a way to pilot himself through childhood. Says ButtenschØn: “I wrote my first song when I was eight years old, so I’ve been playing since I was a kid. For me, that was after I lost my parents—my dad died when I was eight, my mom died when I was nine—and, using music, I could set the scene myself and create my own little universe. So basically for me when I started writing music it was a getaway for me, a perfect little safe spot.”
A strategy for coping? “You could say that. It was like, nobody knew what I felt besides myself even though they were listening to my songs. I wasn’t this orphan kid; I was just a guy playing guitar and writing songs, which was great for me.”
When his children were born, he became more aware that he wanted his music to do more than delight audiences, but Zambian musicians like John Chiti, B’Flow, Danny Kaya, Maiko Zulu, Sista’ D, and Mwiza Zulu, among others, truly opened his eyes about the immense power that music has to raise awareness about social issues, from gender violence to LGBTQ rights to HIV, particularly among youth.
Notes Buttenschøn: “The reason why I call it the ‘music’ foundation is because I really want to use music as a tool to educate people. Whether it’s my story or John Chiti’s story, we need to use culture for something greater than entertainment.”
Education needs the right vehicle, the right teacher—and that’s through culture. Connecting with youth, says ButtenschØn, is harder if you are wearing a suit and tie and come at them with a lot of don’ts. “If you hear a young guy with a fro and a guitar, the young people will be slightly more [receptive] to that. They’ll be like, ‘Hey what is this guy talking about?’ And some of them won’t even figure out that it was the music that gave them the new knowledge!”
Rosen says youth easily gravitate to Buttenschøn—yes, he is Zambian, like them, but “ultimately you have this really cool guy who is now a super-peer almost ,and he is this beacon of positivity.” That positivity, suggests Rosen, was forged during Thomas’s upbringing when his ailing father, concerned about his son’s well being, told their story on Danish television in essence to say, ‘Hey my son is normal and this needs to be normalized.’
Glaser adds: “And that’s a commonality that Thomas and myself have from our parents. My family didn’t have the luxury of freedom of disclosure. So they very much focused on raising me in the same way…so when individuals like, not just Thomas and myself, but ambassadors from my family’s foundation, anybody living with HIV that chooses to separate from an old path of stigma and own their life and be proud of who they are, they become a beacon of hope and a representation of what the rest of youth in this community can become.”
The excitement that youth feel about music goes a long way when it comes to bolstering HIV messaging and making it acceptable to talk about HIV in an empowering way, Glaser suggests, and it also goes a long way in including everyone in achieving HIV-related goals. “For a long time stigma has been and still is very relevant in our lives. It’s steeped in fear, in cultural differences, in religious differences, and so here we have an opportunity to really give a generation a chance to say, ‘I’m not going to subscribe to the old narrative and walk the old path that everyone has told me about for ten, twenty, thirty years. This is now my time, my generation and this is an opportunity to create our own narrative around what it means to stay HIV-free, to live with HIV, to be a healthy part of your community.”
Rosen agrees, noting that his experience so far has been “incredibly gratifying”: “I made this movie for the Zambians. That’s really what I’m going to be most excited about. When this comes out in Zambia and everyone there gets to see this film I can’t wait to see the reaction. Because I’ve seen it already on a micro-scale, and I’m eager to see and I want to know if we can actually make a dent in the prevalency rate. That would be amazing.”
The collaborative achievement that is the film—from its lush cinematography and clarity of storytelling to its heart-and-soul soundtrack—represents the collective spirit that makes the HIV community strong. It also represents using different ways to get the message out about HIV.
Glaser says his mother understood the value of working together and that’s what energized the Elizabeth Glaser Pediatric AIDS Foundation. “She understood that collaborative research was going to be the goal to understanding more about HIV in a shorter period of time. And that collaborative process, with different people from different disciplines sharing information, working together, a true definition of collaboration resulted in prevention of mother-to-child transmission, which was created by a medication called nevirapine, which was actually already something that had been created for the Western world of medicine. The unique thing about it is we looked at a tool that was created for a different job and we applied it to HIV and uncovered that tool’s true potential.”
That’s what something like the test-for-ticket concert can do, says Glaser, and a project his mother would most likely support for its innovation and push-the-envelope tactic. “To think about the amount of tools we have in the world that we could just be simply applying in not wrong ways but in ways that might not uncover their true potential is where the real excitement lies here. We have a real opportunity to leverage a lot of knowledge and creativity in the world, to make what we want to see, which is an AIDS-free generation, possible.”
Glaser continues: “We have the science and I think it’s important for people to know that the science is there. If you are HIV-positive there are medications that you can take that will create a healthy life for you and the loved ones around you and it’s not going to be the cause of death in your life. It’s important that people understand that undetectable is untransmittable. You take care of yourself, you’re taking care of others, and if we know the science is there then the only thing left is the vehicle necessary to push that generation through that threshold, to know their status, to get on medication if they need to, and through this multi-pronged approach, our effort is to make the greatest dent that we can in the HIV effort by eradicating this through behavior.”
Rosen is proud that the team has worked hard to bring together a global coalition, a network of organizations in Africa, North America and Europe. The foundation, however, is on pause, like the rest of the world. Says Buttenschøn: “We’ve done some shows [after the initial concert] and we were supposed to do a lot this year but there’s a new virus in town that completely destroyed every plan for the world! Hopefully we’re working towards doing this again in all the provinces in ’21. Also there are neighboring countries asking if they can replicate what we did and do the same thing in their countries.”
Buttenschøn sees progress in his home country, too: “I believe that we’re breaking the barrier in Denmark, actually; I set up an AIDS foundation in Denmark and, with other organizations, we have this goal now, we really want to get to zero soon. And this year, the latest numbers [say] that in Denmark in 2020, so far, we’ve only had eighty-seven new infections in the whole country…I believe we can get to zero. It’s doable. And I believe once we’ve done that we can show the world how far we’ve come and [say] let’s do this together.”
Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.