Still Here
Paul Kawata Marks Thirty Years at NMAC
by Larry Buhl
2019 marks the thirtieth anniversary of Paul Kawata’s leadership as executive director of the Washington, D.C.-based NMAC, a health advocacy and justice organization whose mission is to “lead with race to urgently fight for health equity and racial justice to end the HIV epidemic in America.” In 1985, when he came to D.C. as a young gay rights activist from Seattle, he thought he’d only be staying five years. Margaret Heckler, the then-Secretary of Health and Human Services said there would be a vaccine for HIV/AIDS in a few years. More than thirty years later, the virus is still here, though it no longer is an automatic death sentence. And while there is no vaccine, there is Treatment as Prevention as well as medication to stop the acquisition of HIV, at least for those who can and choose to access it. I spoke with Kawata about the long, strange trip to ending HIV, and where the movement is now on the eve of the United States Conference on AIDS (USCA), which is organized by NMAC’s Conference Division. I started with a look back at where the movement has been.
Larry Buhl: Remind us what was going on in 1985.
Paul Kawata: I moved to D.C. in January of ’85 and it was snowing and the second inauguration of Reagan [was happening]. It was a very awful time. The mayor of Seattle sent me around the country to see what the city’s HIV policy should be, and so I met with early leaders of the movement who convinced me to go to D.C. to do something. I was recruited to run the National AIDS Network. I thought I’d go there, fight this and I would return and we would live the rest of our lives. I ran the National AIDS Network, from ’85 to ’89 and moved to NMAC in 1989. Thirty-five years later I’m still here.
Are you surprised about that?
I’m surprised about several things. Number one, I’m surprised I’m still alive. Like a lot of gay men who lived through the darkest days of the epidemic, we didn’t know that we would live. In terms of the time, the thirty years has gone by in a blink of an eye. Now I have staff who weren’t even born when I started this job.
I’m one of the founders of the National Association of People with AIDS [NAPWA]. There were thirty-three of us. I’m the last one alive. They needed someone who was HIV negative who was part of the group and who would remember their legacy and that’s who I am. I was the designated survivor. I don’t think they would have said that, but it’s the reality.
You say you were recruited to “do something.” But at the time there was so much to do, where did you begin?
The leaders in the LGBTQ community said we need a presence in D.C., a voice there for us. It was a huge uphill battle, to knock down doors. It was about trying to give hope to my community at a time everyone was dying. And it was the worst possible death. It is almost impossible to describe just how awful. Between the weight loss, the KS, the dementia, losing vision. We were this young community trying to find our feet as LGBTQ people. The seventies were the start of the revolution, and to have this come along, we weren’t prepared. And it was the Reagan era. And that trickles down when you meet with CDC and HHS or go on the Hill to Congress, there were many doors slammed in our faces.
Who were the receptive lawmakers?
Our community owes a huge debt of gratitude to Rep. Henry Waxman as well as his legislative aide Tim Westmoreland. Henry was the light. Tim was our hero and he carried the water for the community on the Hill when nobody wanted to listen to us. Then came Maxine Waters. Then speaker Pelosi. They opened up doors.
Why did most lawmakers not listen to you?
We were gay. People didn’t like gays and they were afraid. And the homophobia, the racism, all of the isms there got magnified by this disease that was killing people in awful ways.
Fast-forward to the current day. What does the landscape look like now?
We have a unique opportunity to end the HIV epidemic. It almost seems unreal that we can use science and biomedical HIV prevention like PrEP and PEP and Treatment as Prevention and have a real pathway to the end. The challenge is, can we work with the communities who need it and reach them in a way that encourages people to get healthcare and get into treatment? Almost one-third of 400K people living with HIV have either fallen out of healthcare or are unaware of their status. And until we can reach those people, our friends who have all these fears, we won’t end the epidemic. Also PrEP works but it is hard to get someone who is healthy to go on medication for the rest of their lives or as long as they’re sexually active. How do we convince people who are healthy especially young people who feel invincible, that this is in their [best] interest. This adds value to their lives. Particularly young gay people of color. They’re not going on [PrEP] and that has to be one of
the targets.
Talk about problems around access to PrEP.
I think we need to talk about the legacy of Tuskegee. This is a community that doesn’t trust the government and doesn’t trust health care providers. There are multiple factors that impact whether we can speak to and work with this community.
To reach out, first we start with healthcare providers who may not be aware of how to adapt their services to reach the communities we need to reach. The way a doctor reaches one community is not the way you reach another. You have to look at the service model and see if it is embracing the diversity of culture. We have to identify key opinion leaders in the community. When you live in a world that tells you you’re not good enough because of your sexual orientation or race, it’s hard to trust the system because that is the same system discriminating against you and stigmatizing you. Part of it is society’s responsibility, part is the movement’s responsibility, and part is being able to say the truth in a way that government programs can’t.
Now in America it is a difficult time for people who are different. Whether you are someone separated at the border from your family, or one of those countries, it is hard to find hope. Where I find hope, like in the early days of the epidemic when nobody cared about us, so we had to care for ourselves. We had to build systems of care. Now, we need to spread that philosophy and values. I find hope in communities that are fighting the epidemic. There is a generation of young gay men of color who are going to make a difference.
What about the rise in STDs in the LGBTQ community?
When we try to end the HIV epidemic we also have an opportunity to end the STD epidemic and hepatitis epidemic. They are all infectious diseases and interconnected.
NMAC is pushing a complete solution, and one thing we hope and believe is, you can’t be on PrEP and not be on health care. You have to be regularly medically monitored. That is an opportunity to look for STDs and hepatitis. There is an explosion of STDs in our community. The data is still not clear if that is because of PrEP or something else. But we can’t ignore the reality. I hope to work with the STD community and hepatitis community to come up with solutions together.
One of the things we’re pushing for here, imagine a test that tested for HIV, STDs and hepatitis. If you had one test for all of them you could address them more comprehensively. In Europe now there is a potential test looking at that. There may be an implant and injections for PrEP and that can change the whole discussion. Using technology will be an important piece of the solution. And it requires a different mindset. When you’re a hepatitis doc, sometimes that’s all you look for; same for HIV doctors. We need to change the silo system of health care so we look at the whole person not just a specific disease.
What is your relationship with the White House? How bad is it?
[Laughs.] The irony that we are trying to end the HIV epidemic in the Trump Administration is not lost on me. But we learned during the Reagan years, it doesn’t matter who is in the White House, we have work to do. This is a big test of our leadership. How do we work with people we vehemently disagree with? How do we figure out plans in an environment that’s as toxic as Washington is right now? It appears like we are about to get the first major increase in HIV funding in two decades. The Administration has asked for $291 million and the House has put forward a budget that nearly doubles that. There is some consciousness right now. We will have to see what happens in the Senate, but I’m pretty hopeful. That’s good but there are a lot of people in the movement who say “I will not work with them,” and they have legitimate reasons, but at the same time we have to work with what we have. It takes money to end this epidemic. We may have the science, but without the money to implement it in the communities that need it, it’s never going to work.
For more information on NMAC, log on to: www.nmac.org.
Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.