Photo by Julie Napear Photography.
Paul Kawata’s arrest outside the White House in 1987 was so civilized, so orderly and orchestrated, you’d think it was little more than empty symbolism. Chained to the gates of the White House to protest then-President Ronald Reagan’s lack of response to the AIDS epidemic, he and the other LGBT activists were told to sit down on the ground in order to be arrested. Kawata, ever stylish, didn’t want to dirty a new cashmere jacket, so a Capitol Police officer got him a blanket to sit on.
But back on the bus and handcuffed for hours waiting to be processed, things took a turn for the worst, especially for the protestors living with HIV. Not long before, many of them had started taking the first FDA-approved HIV drug, AZT. That was a time when people were still dying soon after diagnosis. AZT — as tough as it was on the immune system — was the first medication to offer any hope. Though many poz folks shared their prescriptions with friends who couldn’t get their own, AZT’s success, doctors said, required you to be religious about adherence.
But how do take your HIV meds when you’re handcuffed? Creatively, recalls Kawata. He and his friends worked in teams to open AZT capsules, pour out the contents, and then lick the meds off the bus seats — all without water to wash them down.
Earlier that same year Kawata founded the National Minority AIDS Council with a few other activists in response to the American Public Health Association’s first AIDS workshop, held without any speakers of color.
Fueled by the same rage, grief and loss that drove him that day at the White House, Kawata has been at the helm of that organization — recently re-branded NMAC — ever since. He’s gathered strength from the battle, too, and has never wavered in his convictions about having people of color involved in this fight. Today, he’s one of two Asian-American gay men heading up the country’s major HIV organizations (along with GMHC’s Kelsey Louie), a fact not lost on him.
“I came to Washington in 1985 to fight an epidemic,” the executive director of NMAC says now. “Back then my race didn’t matter because there were so few of us fighting the disease. By the time it could be an issue, I was so ensconced in the fight that I had proven my value as an ally and friend. I also had some great mentors who ‘vouched’ for me.”
Indeed, though use of the phrase “minority” has fallen out of favor since the group was named in the 1980s, the organization’s commitment to confronting the role race has played in the now 35-year-old epidemic has been strengthened even more since a 2014 mission re-envisioning.
Kawata, who had been at the helm of the organization over two decades (in the world of AIDS activism, he jokes those are “dog years”), took a sabbatical in 2010. When he returned, he was reinvigorated but also frank, telling reporters, “It’s going to take time, maybe the rest of my life, to understand and put into perspective the enormity of the grief and loss so many of us experienced. This sabbatical was the first time I stopped to examine those horrible years and the friends I lost along the way. Like many of the survivors of this pandemic, good mental health seems just out of my reach.”
That grief has never stopped Kawata, whose own mission is so strongly tied to NMAC that one can’t help but admire him for making the recent organizational pivots, many the result of a year-long strategic planning process that cumulated with the amendment of NMAC’s name, mission, and vision.
“Our new mission was that NMAC will lead with race to urgently fight for health equity and racial justice to end the HIV epidemic,” says Kawata. “NMAC leads with race because we believe that to end the HIV epidemic, we must come to terms with race and its impacts on HIV care, services, and prevention.”
The activist admits that too often strategic plans “become paper weights that sit in a bookcase,” but for NMAC, “strategic planning was transformative. It created a new focus and commitment for the staff, board, and constituents. We had permission to talk about racism and the pain that was core to so many of our lives.”
What NMAC and others are acknowledging (and perhaps what many activists in the South have known for years) is that though we call it the AIDS epidemic, there’s clearly more than one.
“One of NMAC’s biggest concerns is that we will end the epidemic in San Francisco, Boston, and New York,” Kawata admits. “But what about Oakland, East L.A., or Anacostia? Don’t get me wrong, we are thrilled for San Francisco, Boston and New York City, but we must always remember that ending HIV in America means ending the epidemic in Newark, Little Havana, and the south side of Chicago, too.”
He’s not shy about the “why” behind these discrepancies: “The different epidemics in HIV are based on economics,” Kawata says bluntly. “Communities with access to healthcare, insurance, and a strong social service network are better prepared to meet the challenges of HIV. So we will end the epidemic in certain communities while HIV continues to ravage the have-nots.”
So is it time to rethink America’s HIV prevention agenda?
“Yes, yes, yes!” Kawata demands. “To fully access the promise of biomedical HIV prevention, health departments and community-based organizations need to modify their infrastructures to meet the demands of a healthcare-centered approach to prevention.”
He argues that “those organizations that are not able to adapt will probably close their doors,” largely because when “HIV care is also HIV prevention, there are new expectations about how to be effective. Reduction in the number of newly-infected individuals and increasing rates of viral suppression should be the gold standard for success.”
Unlike some leaders, Kawata is bullish on the science behind HIV prevention as well. “Given the latest science, all people living with HIV should be retained in care and on treatment that suppresses their viral load. Everyone who is sexually active should also be retained in care, regularly tested, and treated for sexually-transmitted infections, and educated or prescribed PrEP (pre-exposure prophylaxis).”
The longtime survivor was buoyed by a report out of Denmark in May that documented the success of Treatment as Prevention (TasP).
“The report postulated that TasP could work in resource rich countries,” he says. “I’m not sure what that means for America; however, regardless of the public health benefit of treatment, all people living with HIV should be retained in care and on treatment for their individual benefit. That’s what makes this so important — we have an opportunity to prolong the lives of people living with HIV using the same mechanism that would also bend the curve of new HIV infections.”
Kawata “believes at my core that our work must follow the data,” he adds. “The data should drive programs, funding, and target populations.” For that, he’s also tapped into some unexpected funding sources: namely real estate.
Earlier this year, NMAC sold their former corporate headquarters to EastBanc for $4 million. In 1993 the organization had purchased “a burned out shell of a townhouse,” in a building that had been destroyed in the “riots and fires that engulfed D.C. after Dr. Martin Luther King was assassinated.” Thanks to gentrification, the value of the property skyrocketed and NMAC decided to sell in order to use the extra cash to “quickly develop programs without waiting for government or corporate funding.”
Their revamped Treatment program and their new Leadership Pipeline, are two examples of arenas where that quick funding helped out. The latter strives to “promote integration of racial and social justice within NMAC’s overall projects and engage new and emerging leaders with existing champions to build networks between the past, present and future response to HIV.” It also brings together dozens of youth scholars from around the country to attend NMAC’s flagship program: The U.S. Conference on AIDS.
The largest gathering of its kind in the country, the 20th annual USCA will be held in September in Southern Florida, an ideal location for this year’s target population: people from the Caribbean diaspora. If Kawata has any say, it’ll be filled with as many opinionated activists as it was last year, when he was interrupted on stage by a “Trans Lives Matter” protest. Instead of shutting it down, Kawata asked the crowd to give the women and men leading the protest a round of applause.
“Our movement was founded on the value of protests and civil disobedience,” he says now. “It is in our DNA and something that I will always support. Last year’s protest was a continuation of that great tradition. The protest focused on the White House Office of National AIDS Policy and was not really about NMAC; however, we have been the target of their concerns in the past.”
The protest was arguing for transgender inclusion in testing, treatment, and clinical trials, among other things — and for just plain listening to the needs of trans people living with HIV or AIDS.
“I will never fully understand what is means to be transgender,” Kawata admits. “But that does not mean I cannot support and stand in solidarity with them.”
The conference has moved towards more trans-inclusivity in recent years, with everything from gender neutral bathrooms to scholarships for transgender attendees. “This year we will continue our work with the trans community,” he says. “This year’s Trans Pathway is being coordinated by [email protected] and Positively Trans. We will also have gender neutral bathrooms, a trans lounge, free exhibit space, scholarships for trans delegates, and trans speakers at plenary sessions.”
There are only a handful of plenaries, so this feels like a meaningful change. It’s all part of Kawata’s belief that when it comes to HIV, we need the LGBT community to help lead, even in the face of stigma.
“Separating HIV stigma from LGBT stigma seems impossible. Maybe that is why the LGBT community must continue to fight HIV. The world sees our issues as inextricably intertwined. It was the LGBT community that first stood up to fight a virus that was killing our friends. I remember hospital trays left in hallways, funeral directors that would not cremate our dead, and families that would abandon their children.”
He’s quick to note, “HIV is not a gay disease, but it has forever changed the LGBT community.”
It’s changed him too. He still tries to retain some privacy, he says, withholding details of his family and his age, though admitting the latter is partly about vanity (after all, this is still the guy who wouldn’t get his cashmere dirty).
But, he adds, “I never thought I would live to be this old, but it seems real disingenuous to complain when there are so many friends who are not here.”
It’s hard to figure out what he’s proudest of, if anything, in his storied career as a fighter. “It’s hard to be proud of anything when you are still fighting an epidemic,” he admits. “Ask me this question when it’s over. I hope to be alive when that happens. That moment will be the proudest moment of my life.”
No matter what, he’s lived long enough to know he made his father proud, something many gay, HIV-positive men of his generation weren’t able to do.
“Right before my father passed, he saw me receive an award at a World AIDS Day breakfast in Seattle,” Kawata recalls. “Sitting at one of the front tables, he was the first to stand and clap at the end of my speech. As we were walking out of the auditorium, he introduced himself to strangers and told them he was my father. Given he was the only old Asian guy in the room, most of the people had already guessed this fact, but he continued to tell everyone he was my father and that he was so proud of me. I will always be thankful for that gift.”