Our Fight for Justice

The HIV movement has always been part of the struggle for civil rights. Back in the ’90s, NMAC worked with Mrs. Coretta Scott King and the King Center/The Center for Nonviolent Social Change to bring leaders from the Civil Rights movement together with the HIV movement. Mrs. King uniquely understood the importance of including our work as part of the larger struggle for justice in America.

As America celebrates Dr. King’s birthday, here is what NMAC is doing to keep his dream alive. In 2022, we will work to realign a portion of the Minority AIDS Initiative (MAI) back to its original congressional intent. NMAC will work with Ryan White Part A, B, C, and D grantee to address HIV stigma in the HIV workplace. The United States Conference on HIV/AIDS will highlight the struggle of the Latinx community when we meet in Puerto Rico. We will continue our fight for people over 50 living with HIV by expanding our efforts to bring their critical voices to Congress.  NMAC will work with the White House to review standards of HIV care, especially geriatric services. Look for a special announcement about a new program for Black Women.

As we work to end the HIV epidemic, HIV stigma continues to create barriers. Only half the people living with HIV are retained in HIV care. It is incumbent to build HIV services that work with and for the communities hardest hit by HIV. While there are many types of HIV stigma, NMAC looks at stigma through the lens of race. We believe race plays a critical role in the HIV stigma that impacts too many PLHIV. Until we address race and its impact on our work, we will never end the epidemic.

For Part A, B, C, or D grantees and their subgrantees, NMAC is offering free trainings (virtual or in-person), technical assistance, and learning collaboratives to address HIV stigma in the HIV workplace. Apply at TargetHIV.org/ESCALATE. Our work faces unique issues because so many employees are also living with HIV. Not only do we need address HIV stigma in our services, we must also be responsive in our workplace. This effort is a first for NMAC. Typically we would not work with specific Ryan White funded parts. However, it’s part of our HRSA cooperative agreement and speaks directly to our mission to urgently fight for racial justice and health equity to end the HIV epidemic in America. I know everyone is busy and overwhelmed with COVID, but I’m inviting Part A, B, C, and D grantees to work with NMAC to reduce HIV stigma in the HIV workplace. Please email Ken Pettigrew for more information.

NMAC is calling on Health and Human Services and the White House to bring a portion of the Minority AIDS Initiative back to its original congressional intent. Not all the money, but enough to start to provide racial justice to the communities in need. The impact of past funding decisions has decimated a once vibrant cohort of minority led HIV organizations. NMAC is calling for justice for the minority led agencies that closed when HHS changed the intent of the MAI. To be clear, justice is not equality. Justice is for communities who were disadvantaged because of systemic rules that minimized their value or contributions. The MAI is a clear example of funding that was set up for people of color only to be taken away when more money was authorized. I am very excited that Dr. Maya Rockeymoore Cummings has come on board as a consultant to lead our MAI efforts.

NMAC understands the complexities of using race as a factor in funding decisions; however, it is not impossible. Our fight for MAI justice is part of our commitment to keep Dr. King’s dream alive. HIV has an opportunity to impact more than our movement. Figuring out how to use race as a factor in federal procurement has ramifications way beyond our work. As we’ve seen with COVID vaccines, the HIV infrastructure can be used to build a better world.

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

NMAC to Work With Dr. Maya Rockeymoore Cummings to Build Support for Minority AIDS Initiative

NMAC has joined with Dr. Maya Rockeymoore Cummings to build Congressional support for needed changes to the Minority AIDS Initiative (MAI) under the Ryan White HIV/AIDS Program. Dr. Cummings will work with NMAC’s Strategic Partnerships and Policy division to advocate for improvements that are critical to the success of the federal plan to End the HIV Epidemic.

The MAI was created in 1998 in response to growing concern about the impact of HIV/AIDS on racial and ethnic minorities in the United States. It provides new funding designed to strengthen organizational capacity and expand HIV-related services in minority communities.

Dr. Cummings leads Global Policy Solutions, a policy firm that makes policy work for people and their environments. Her areas of expertise include health, social insurance, income security, education, women’s issues and youth civic participation.

A former adjunct professor in the Women in Politics Institute at American University, she has also served as the vice president of research and programs at the Congressional Black Caucus Foundation (CBCF), senior resident scholar at the National Urban League, chief of staff to former Congressman Charles Rangel (D-NY), professional staff on the House Ways and Means Committee, and as a CBCF legislative fellow in the office of former Congressman Melvin Watt (D-NC) among other positions.

“I’m delighted to work with NMAC to help them elevate the historic importance of the Minority AIDS initiative,” said Dr. Cummings. “We are now in the fourth decade of the HIV/AIDS crisis and black and brown people are a majority of all new HIV diagnoses. Because progress in prevention and treatment has been shamefully uneven by race and ethnicity, the racial equity strategy embedded in the original MAI remains a priority for the nation.”

“We are thrilled to be working with Dr. Cummings,” said NMAC Executive Director Paul Kawata. “‘Her expertise, experience, and familiarity on Capitol Hill will be a tremendous asset to NMAC as we work to make critical changes in the Minority AIDS Initiative. For the federal Ending the Epidemic plan to succeed, it must prioritize communities of color, as they still bear the biggest impact of HIV. Through increased funding of MAI and a return to its original mission to support HIV service organizations led by people of color, federal leaders can take a big step toward ensuring the plan’s success. That will be a big and potentially controversial step, so Dr. Cummings’s assistance will be a critical part of our efforts to make it happen.”

NMAC leads with race to urgently fight for health equity and racial justice to end the HIV epidemic in America. Since 1987, NMAC has advanced our mission through a variety of programs and services, including: a public policy education program, national and regional training conferences, a treatment and research program, numerous electronic and print materials, and a website: www.nmac.org. NMAC also serves as an association of AIDS service organizations, providing valuable information to community-based organizations, hospitals, clinics, and other groups assisting individuals and families affected by the HIV epidemic.

WTF 2022?

I am at a loss for how to lead during what could be some of the difficult days. Six hundred thousand new cases of COVID per day. Too many friends are sick but luckily most are OK because they are vaccinated and boosted. It feels like everyone is going to get the Omicron. I remember that feeling during the early days of the AIDS epidemic. As a young gay man watching too many of my friends get sick and die, AIDS felt inevitable.  It was only a matter of time. Yet we didn’t give in, and we learned to fight back. What does COVID mean for the HIV community? How does our work fit into this new reality? How do you lead and work to end the HIV epidemic in the middle of the latest surge?

Here is what I am telling my staff: Scientists predict that the next few weeks will be some of the most difficult times we’ve experienced, with new cases regularly passing over one million per day. Personally, I think it’s impossible to get the real numbers because it is too difficult to get the necessary confirmatory tests. Between people who are vaccinated and people who got COVID, America might reach some type of “herd” immunity; however, that assumes there won’t be another variant. Right now, it is impossible to know what the virus will do.

Experts say that March could be the return to normal, but they also said that about the summer of 2021. This uncertainty makes everything difficult. Our movement needs a short-term strategy to manage the immediate challenges and a longer-term strategy that looks at ending HIV. In the short-term there is going to be lots of sickness, but hopefully not as many deaths. The HIV community must prioritize the health and wellbeing of people living with HIV, especially PLHIV over 50 who are immune compromised. It is impossible to know how many PLHIV are vaccinated. By my very imperfect calculations, if there are 1.2 million Americans living with HIV. 49% are either unaware of their HIV status or have fallen out of HIV care or around 600,000 people. That’s a lot of immune compromised people who may or may not be vaccinated. COVD disproportionately kills older Americans and the majority of people living with HIV are over 50.

In the short term that means everyone who is eligible needs to not only be vaccinated, but also boosted. That is the best defense we have against COVID. We may need a fourth booster, particularly for people who are immune compromised. NMAC will always follow the science. It’s time for health departments and community-based organizations to actively reach out to all consumers to ensure that they are appropriately vaccinated. We cannot wait for PLHIV to come to us. We need to go to them while also being sensitive to privacy and confidentiality concerns.

As we have learned with HIV, COVID isolation can lead to a sense of helplessness and depression. When you are sick or depressed it is hard to do anything, let alone take your meds.

In addition to boosters, our movement needs mental health check-ins. While we are zoomed out, one of the things I noticed at this year’s United States Conference on HIV/AIDS was the active participation of PLHIV in various lounges that the meeting offered. Like we’ve done in the past, there needs to be regular support groups (via Zoom) and virtual buddy programs that build connections and a sense of purpose.

PLHIV need access to technology to zoom for virtual medical appointments, and to connect with their case managers and peers. How can health departments and community-based organizations provide free access for clients? Because of COVID and the challenges of staying six feet apart, access to technology is not a luxury, but a necessity. The standard of HIV care needs to be expanded to include these lifesaving tools. If housing is HIV prevention, then so too is an iPad and internet connection.

The short term is all about boosters, mental health check-ins, and access to technology. The longer term (hopefully later this year) is still about ending the HIV epidemic. Work to end the HIV epidemic starts with reading the plan. If you don’t know what is in the plan, it’s hard to be part of the solution. Here is an insider’s piece of information: the White House will meet with various federal offices to ask for their responses to the Ending the HIV Epidemic and the updated National HIV/AIDS Strategy. Updated agency plans will be due in March. NMAC in coalition with other national partners will request meetings with the various federal agencies to discuss their updated plans. There are many new and important components that need to be appropriately reflected in these agency’s plans.

I am very concerned about the next few weeks. I worry about our physical wellbeing and our long-term mental health. WTF 2022. I hoped it would get better, now it just seems like a cluster f**k. What I’ve learned from HIV is that we are stronger together. During these very difficult times, it is important to remember that kindness is free.

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

World AIDS Day at the White House

Ending HIV is about more than stopping a virus. To be successful, it’s about creating a world that is more equitable. It gives voice and power to communities who for too long have been denied justice. Ending HIV is the symbolic expression of our fight for racial justice and health equity. I was fortunate to be invited to the White House for World AIDS Day. I share the experience not to brag, but to be your eyes and ears to history. Work to end the epidemic starts by reading the plan. The White House event was the public declaration of support from the Biden/Harris administration. Due to COVID, not everyone could attend. We are all part of this history. This is my experience of being in the room when the President of the United States used the bully pulpit of the White House to commit to ending the HIV epidemic by 2030.

I live close enough to walk. It was a beautiful cold December day. I journeyed down Black Lives Matter Plaza to see the two-story Red Ribbon at the front of the White House. During the Regan years, I was arrested at the exact same spot where I am now a guest. Seeing the ribbon was bittersweet because there are too many friends who should be here.

Since it is a few weeks before Christmas, everything was festive and decked out for the holidays. The entry was an archway of boxes wrapped as gifts. It felt like a huge gift to be invited. Most of the guests were taking selfies at these Instagramable moments. Here I am with John Barnes (Funders Concerned About AIDS) and Arianna Lint (Arianna’s Center). While you see our smiling faces in the pictures, we only took off our masks for photos. With all our time in isolation, people weren’t sure if we should hug or bump elbows. Since I had my booster, I’m hugging everyone, but with a mask on.

The White House is the physical representation of America’s power in the world. As a result, staff work very hard to make everything perfect by paying attention to the details. It’s kind of like Disneyland on steroids. Everyone is so polite and happy. Members of the military are in full dress uniforms greeting everyone with “welcome to the White House.” I think they purposely select good-looking people for these roles.

The first tree on display is the Gold Star Tree that honors the heroic men and women in the military who died for our country. There were too many gold stars, each had the name of someone who made the ultimate sacrifice. In that way, it reminded me of the Names Project quilts. Too many lives lost too soon. I was on the mall when this display happened. I remember the excitement when the President and Mrs. Clinton walked onto the quilt display area.

 

Part of the fun in visiting the White House is going into the rooms that most of us only see on TV. The picture with Admiral Rachel Levine, our Assistant Secretary for Health, was taken in the State Dining Room. President Lincoln is looking over our shoulders. It fills my heart with so much LGBTQ pride. Not that long ago, neither of us would be welcomed into the White House. It is hard to describe what it means to stand with the four-star admiral in the Public Health Service who also brings her experience as a transgender pediatrician to the fight. This photo might make some people mad, but there are many more who will see it as a sign of hope. The genie is out of the bottle and we will never go back. Admiral Levine is a living example of how far we’ve come, but there is still a long way to go. NMAC looks forward to working with her office as the leader for HHS’s efforts to end the epidemic.

I was also excited to meet Mayor Lori Lightfoot, the first Black Lesbian Mayor of Chicago. She was a good sport as I escorted/shoved her around the room to meet Dr. Fauci, Dr. Demetre Daskalakis (CDC), Dr. Stephen Lee (NASTAD) and Harold Phillips (White House). Only one person in the above photos is straight. How cool is that? I told the mayor that NMAC looks forward to coming to her city, maybe as soon as the Spring of 2022. If one of our Chicago constituents can forward her these pictures, I would appreciate it.

The main presentation was in the East Room of the White House. The symbolic nature of having a seat at the table was not lost on me. Like so many in our movement, I’ve spent my entire life fighting for health equity and racial justice as stepping stones to end the epidemic. There is no way this kid from Seattle could imagine sitting in the White House with world leaders. Yet there I was with my red jacket and sparkly shoes. In the world of blue and grey suits, I stood out like the flower that I am. Even at the White House, I refuse to confirm. Being a gay person of color is my badge of honor. It took me a long time to find the self-acceptance to love the Asian queen that I am. I make sure nobody mistakes me for being heterosexual. Not that being heterosexual is a bad thing, it’s just not what I want to be.
 

 

 

There were many members of Congress in attendance. Our shero House Speaker Nancy Pelosi led the delegation that included Congressmembers Maxine “Auntie Max” Waters, Barbara Lee, Sean Patrick Maloney, David Cicilline, and Jenniffer Gonzalez-Colon. The President reminded attendees that Mrs. Pelosi came to Washington to fight AIDS. With her leadership, HIV continues to be prioritized by Congress. I met the Resident Commissioner from Puerto Rico, Jenniffer Gonzalez-Colon and invited her to speak at the 2022 United States Conference on HIV/AIDS in San Juan, Puerto Rico. Members of Congress are key to HIV appropriations and funding our efforts to end the epidemic. I was so proud that we could honor Mrs. Pelosi at this year’s USCHA.

When Harold Phillips, the head of the White House Office of National AIDS Policy (ONAP) walked into the East Room, the audience broke into spontaneous applause. It was a moment. Here was one of our own, a Black Gay man living with HIV who was in charge. I ran over to hug him as he whispered, “don’t you make me cry.” I said, “too late I am crying enough for both of us.” The official announcement started with HHS Secretary Becerra. He would introduce the person who would introduce the President. Remember, this is Washington and there are very strict protocols.

It is always a surprise to see who the White House selects to introduce the President. The individual chosen sends a message and the administration selected Gabriel Maldonado. As a Gay Latinx man living with HIV, Gabe is the Founder and CEO of TruEvolution in Riverside California. His selection highlighted the important role that community will play in this effort. Gabe did us proud. He not only shared his personal story, he also brought along his mom. You could see his pride when he acknowledged her from the stage. Then came the President.

 

President Biden did not disappoint. His speech was strong powerful and clear. Here is the full text of what he said. Not only did he commit his administration to ending the HIV epidemic by 2030, he also called out racism as a public health challenge. He went off teleprompter to invite Gabe’s mother to the stage. This is a President who leads with empathy and bringing mom to the stage showed us his heart. He is a good man who is working under impossible conditions. His real gift was the bully pulpit of the White House. A key component to ending the epidemic is “political will.” With this event, he put the force of his administration behind this effort. It is now up to all of us.

As I mentioned earlier, the White House is like Disneyland on steroids. As we walked out of the East Room, the military band played “Somewhere Over the Rainbow.” We were then invited to have our photo taken in front of the two-story red ribbon. Here I am with Naseema Shafi (Whitman-Walker Health) and Kierra Johnson (National LGBTQ Task Force). As a parting gift, we received a copy of the President’s World AIDS Day Proclamation.

This was history and I wanted all of you to be there. I hope this piece expresses my excitement, not because I got to go, but because the White House is committed to ending the HIV epidemic. This event was an important signal from the people in power. They are committed to ending the epidemic by working with community. Now the real work begins, and it is going to take all of us!

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

 

Statement from NMAC on White House Plan to End the HIV Epidemic

Following is a statement from NMAC Executive Director Paul Kawata on the new national HIV/AIDS strategy to end the epidemic:

“NMAC is very pleased by the White House’s new national HIV/AIDS strategy, particularly in its use of hard data to drive its tactics, recognition of the context of HIV prevention and care, and the willingness to treat HIV as an issue of social justice and equity.”

“Hard data is critical to an effective strategy to end HIV. Without knowing who is at risk, where they live, and what prevention and treatment approaches work, it’s impossible for any organization to reach those who most need to be reached. In an epidemic that has been marked by so many responses based on political ideology, this reliance on science is critical.”

“We are incredibly pleased that the administration recognizes that HIV care and prevention doesn’t occur in a vacuum. For those living with or at great risk of HIV, there are numerous other issues in their life that make HIV a low priority, housing being one of the biggest ones. The inclusion of numerous cabinet agencies in the new strategy, including Housing and Urban Development and Veterans Affairs, shows that this administration understands that ending the HIV epidemic is not just about medications and condoms; it’s about addressing the critical issues in a person’s life.”

“Finally, we are also very pleased to see that the administration will treat HIV as an issue of social justice and equity. That’s the reason NMAC was founded more than 30 years ago and continues our mission to lead with race today. We know that HIV thrives due to racism, stigma, and inequities in health care and our economic system. We believe that fighting HIV in the context of social justice and equity means that this strategy will be far more effective than previous efforts.”

A Love Letter to the Women of NMAC

I usually don’t share internal issues at NMAC; however, recently I had the pleasure of promoting Kim Ferrell to be NMAC’s Deputy Director for Operations, Alison McKeithen was promoted to be Assistant Director for Conferences, Shanta Gray was promoted to Senior Registrar and Meeting Planner, and Gabriella Spencer was promoted to be the Associate Program Manager. Women (cis & trans) are the heart and soul of NMAC. In a few weeks many of you will be at the 2021 United States Conference on HIV/AIDS and it is important to know who really makes things happen. Women make NMAC a force of nature and this is my love letter to them.

Women have always played a critical role at NMAC. Two of NMAC’s founders include Rashidah Abdul-Khabeer (formerly Hassan) and Sandra “Ms. Mac” McDonald. According to the African American AIDS History Project “Rashidah has spent most of her life in Philadelphia, where she grew up amidst the social change and political ferment of the 1950s and 1960s. She began to volunteer with Philadelphia AIDS groups, which were primarily oriented toward white gay men, and became frustrated with their apparent unwillingness to develop specific outreach and education efforts for African Americans. In 1985 she founded Blacks Educating Blacks About Sexual Health Issues (BEBASHI), one of the country’s first black AIDS service organizations.”

Sandra Singleton McDonald, affectionately known as “Ms. Mac” is President and Founder of OUTREACH, INC., the first minority community-based organization established in Georgia to provide HIV/AIDS and drug treatment and prevention services to African American communities. Established in 1986 out of the trunk of her car, the agency has served more than 6,500 clients for over 30 years. Sandra has also consulted with theNational Football League, National Basketball Association, and the National Basketball Players Association.

Some amazing women of historical note have been on our board including NMAC’s Honorary Board Chair Patti LaBelle. Ms. Patti was part of NMAC’s HIV treatment education campaign on PCP. She lent her voice, talent and money to help build NMAC. The legendary jazz singer Nancy Wilson joined our board in 2005. Her concert to celebrate NMAC ‘s 20th Anniversary is still on YouTube.

Mrs. Coretta Scott King attended both USCA and our Community Planning Leadership Summit. It was at the USCA in Atlanta that Mrs. King hosted a reception where the Civil Rights Movement saluted the HIV movement. She brought icons from her struggle to the Opening USCA reception in order to build bridges and understanding about the linkages between our movements. Mrs. King brought a voice of love and compassion for people living with HIV/AIDS at a time when too many other leaders had turned their backs.

Sometimes the rap on NMAC becomes about me and that is wrong. The agency is too diverse and too strong to be minimized in that way. I hold up these women staff, board, and community advisory members so that constituents can better understand why NMAC is successful. Women have always played a critical role at the agency. While there is not enough space to share everyone’s story, here are just a small fraction of the women who make NMAC the agency our movement needs to end the epidemic.

I want the world to understand who has the real power at NMAC and it’s not me. I am so grateful to stand with these women. Their support and critique make me a better leader. NMAC would not be NMAC without them.

 

Yours in the Struggle,
Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

NMAC Capitol Hill Champion Awards for Minority Health to be Held Nov. 30

NMAC will present its second annual Capitol Hill Champion Awards for Minority Health on Nov. 30 at 7:00 PM ET. The ceremony will honor U.S. Secretary of Housing and Urban Development Marcia Fudge with the Elijah Cummings Award for Minority Health Equality and Congresswoman Maxine Waters with the John Lewis Good Trouble Award. District of Columbia Delegate Eleanor Holmes Norton will also speak. To attend this free event, register at https://rb.gy/1tujzd.

“For our second annual Capitol Hill Champion Awards, we are greatly honored to recognize Secretary Fudge and Congresswoman Waters for their long commitment to people living with HIV,” said NMAC Executive Director Paul Kawata. “‘Over the course of their careers in public service, they have proven themselves to be tireless champions for those living with HIV and communities facing discrimination and inequities. We are grateful for their leadership and look forward to continuing to work with them to end the HIV epidemic.”

“NMAC wanted to thank and honor Secretary Fudge and Congresswoman Waters for all they have done against tremendous obstacles,” said NMAC Director of Strategic Partnerships and Policy Joe Huang-Racalto. “‘Like the people we serve, the Secretary and the Congresswoman have directly faced prejudice, discrimination, and being dismissed or underestimated. That has made them vital champions for communities that bear the greatest burden of HIV. We are very happy to thank them for their years of work.”

Thanks to Premiere Sponsor Merck for their support of the Capitol Hill Champions Awards.

Yours in the Struggle

“Yours in the Struggle” is how I close correspondence. The phrase is more than words, it’s an homage to my friend and partner in crime, Michael Hirsch. I moved to Washington, DC in 1985 to fight an epidemic that was killing my family and friends. To this day, I am not sure why they chose me, a 20-something kid from across the country who knew nothing of politics. The serendipity of life meant that I had to find the courage to leave the comfort of home (Seattle) and jump into the abyss of Washington.

Michael was one of the first persons to take me under his wing. He was the quintessential New York activist: outrageous, maddening, and fun. He was also the first executive director (ED) of the New York People with AIDS (PWA) Coalition and the first ED of Body Positive. While at Body Positive, Michael came up with the wild notion of peer provided services. His model using consumers changed the nature of HIV services.

Michael used to come to board meetings and infused while doing business. He always wanted to remind us that HIV was about real people with real problems. It was because of Michael that I got accepted into the PWA community. He insisted I attend organizing meetings that would later become the National Association of People with AIDS (NAPWA). In those days, we didn’t have email. Michael would write these long diatribes about life, the movement, his frustrations, and joy. They were intimate letters between someone who was dying and someone who would remember. In many ways, they were the culmination of his life. He would close each letter with “Yours in the struggle.”

The call from the hospital. A stranger telling you to come quickly because your friend is about to pass. When I got the call for Michael, I was in Washington and needed to rush to New York. I remember hopping that shuttle and praying that he would hold on so I could say goodbye. The taxi ride from LaGuardia to Saint Vincent’s was one of the longest in my life. As I rushed down the hall, I saw Michael’s mother and sister sobbing. My heart sank. I thought he was gone. Just then Rona Affoumado came up to me and said “Oh God, you just made it. The family has just decided to pull the plug.” I wasn’t too late. Rona escorted me into Michael’s room. It was all pumps and whistles from the many machines trying to keep him alive. It had that funny smell, the smell of death. Michael had been unconscious for the last 24 hours. The morphine had stopped the pain and allowed him to sleep. As they turned the machines off, there was an eerily silence. I held Michael’s hand and told him how much I loved him. Just then, his eyes opened, and a single tear rolled down his cheek… and then he was gone. The nurse would later tell me that his opening his eyes was probably just a reflex, but to me it was a sign. It was Michael saying goodbye. I close my letters and emails with “Yours in the struggle” to honor his life and the lives of so many that we lost.

Our work has moved so far from those early days. While we talk about patient centered services, the reality is far more “medical model.” Why have so many people living with HIV fallen out of care and services? The Biden/Harris plan to end the HIV epidemic must prioritize retaining people in HIV services. I believe that starts with Michael’s radial notion of peer provided services. Our movement needs to prioritize hiring people living with HIV to deliver HIV services. They have a unique understanding of the stigma and discrimination that continues to challenge too many living with HIV in America.

Yours in the Struggle,
Paul Kawata 

 

 

 

 

Paul Kawata
NMAC

Paul Kawata’s Fashion

This week we were to gather for the 2021 United States Conference on HIV/AIDS. While it was right to pivot to a virtual meeting, I’m still disappointed that we don’t get to see each other. Back in May, NMAC was very confident that we could meet in the fall, but the Delta variant kicked our ass. Hopefully we can meet in the Spring of 2022 (look for an announcement).

It would seem disingenuous to not state the obvious: with no in-person USCHA there’s no Paul Kawata fashion, no gaudy over the top jackets that can be spotted across the room. In the early days, there was a method to my madness. I used fashion to stand out from the crowd. DC has a very strict dress code of blue or grey suits. Everyone looks the same and very heterosexual. My clothes screamed “gay” and, back in the ‘80s, that was radical.

Because of my work in the movement, I was lucky to sit at the feet of one of the last great social doyennes of New York, Mrs. Judith Peabody. Judy committed her life to taking care of her friends who were dying of AIDS. With her Peabody pedigree and old family money, she forced open the doors of “social” New York. Her world did not want to talk about HIV. Judy’s actions raised a lot of concerns because “women of a certain social standing” did not hang with people like me. We bonded over too many friends who died too soon.

Judy showed me how fashion was more than pretty clothes. Her outfits sent messages of love and acceptance. She didn’t just wear Bill Blass to the Met Ball, she also wore Bill to Harlem where she volunteered at Harlem House. She wore Bill to her HIV support group for care givers at GMHC. Her fashion made people smile. The designer clothes, jewelry, and big hair brought joy and beauty everywhere she went and to everyone she touched. Judy once told me, “I am who I am wherever I am. I dress this way to go to the ballet and to Harlem.” Judy was my Auntie Mama. She introduced me to a world that was larger than I could have imaged. My over-the-top jackets are an homage to Mrs. Peabody.

Hopefully, this story made you smile. There really was a time when I was fun. I know it seems impossible now, but I swear to you, I used to be fun! I saw myself as an Asian Joan Crawford. If you don’t know who she is, look it up and get out of my face. Can you tell I’ve been watching and re-watching RuPaul’s Drag Race?

Missing people is hard. When I say I’m a little gutted, I mean it. I worry that COVID makes our work impossible. Okay, I said it. We are falling behind and our efforts to end HIV have stalled. It’s not our fault. Who could have foreseen COVID? While I understand the need to prioritize, I worry that HIV, STDs, and Hepatitis are going unchecked. It’s time to figure out how to live with COVID while ending multiple epidemics.

The Biden/Harris Plan to End the HIV/AIDS epidemic will be released around World AIDS Day. While NMAC has not seen the plan, our hope is that it will lead with race. I’m looking for a plan/challenge that is bigger than I am, something that will take teams of experts and community working together to solve, to be excited about the future and our work to end HIV/AIDS epidemic.

Back in the day, it was scandalous when I wore a purple jacket and no tie to meet President Obama. In a sea of uniformity, I stood out like the flower I am. Due to COVID I’ve not been shopping in a long time. In fact, I’m living in sweatpants. I don’t think I will ever wear slacks again, let alone over the top jackets. Recently I purchased my first pair of comfortable shoes that are not cute. They look like grandpa shoes, but I guess I am getting to that age. Thanks to the filters, I look young and refreshed on my zoom calls. The reality is far less attractive. Please be kind the next time you see me.

While not in-person, I look forward to seeing everyone virtually at the 2021 United States Conference on HIV/AIDS. There is still time to register. What else do you have to do? This year’s meeting directly follows the release of new EHE plans. It will be an important time to restart our efforts to end the epidemics of HIV, STD, and Hepatitis and to fight like hell for the living while never forgetting the shoulders we stand on.

Yours in the Struggle,

 

 

 

 

 

 

 

 

 

Paul Kawata
NMAC
*This picture of me and Judy was taken at a dinner that we hosted at the Library of Congress. The HIV community came together to celebrate the election of President Bill Clinton. Larry Kramer would protest at the dinner, but that story is saved for later.

 

Dating Apps, Shame, and Stigma

It’s a mess out there. If you’ve been on a dating app recently, you probably know what I’m talking about – the deluge of unrequested photos, trying to string along a conversation from one-liner responses, the made-and-broken plans to meet up. Then, of course, we have the toxicity. People ghosting. People, under the guise of near anonymity, saying racist or stigmatizing things that they might not in the light of day. The constant judgement of one’s face or body as good, or good enough, or not quite either.

What exactly, though, does any of this have to do with our work at NMAC? More than we thought, it turns out. According to the researchers who penned NiceAF, a recent report sponsored by Building Healthy Online Communities (BHOC), consistent negative experiences on dating/hookup apps can actually increase a person’s chances of acquiring HIV. From the report: “Yale University researchers, John Pachankis and Charles Burton, found that for some gay and bi men, being repeatedly rejected by other gay and bi men online is associated with greater risk for HIV and symptoms of depression and anxiety.”

In NMAC’s Treatment division, we often talk about identifying gaps in knowledge that need to be filled. Right now, we have the tools at hand to end this epidemic: effective HIV treatments, PrEP, PEP, and condoms. In this movement, we need to do a better job of understanding how to better empower people, especially queer people of color, to utilize these tools according to their own needs. Treatment and adherence education is a big part of that, as is advocating for structural change at every level of power.

And yet, there’s still another factor to address, a deep and nebulous one, before we can finally end the epidemic. That, of course, is figuring out how to lessen the levels of shame and stigma in queer communities, especially around HIV. On one level, the fact that there is still so much shame and stigma is understandable, given all the ways that the white supremacist heteropatriarchy signals to queer folks of color that this world was not made for us.

We would be remiss to ignore, however, that part of this shame and stigma is perpetuated by our own communities. Perhaps researchers are picking up on something that folks have intuitively felt for a long time: many of us expect this kind of stigma from straight people, but the effects can be deleterious after consistently hearing it from those we might be counting on.

At the root of our work in Treatment is really thinking about the ways that we, particularly queer folks of color, relate to one another and to tailor adherence and prevention education programming to those lived realities. One thing that we are learning more and more about, thanks in large part to the work of activists/researchers (like those at BHOC), is that the stresses queer communities of color experience are complex, and our interventions need to be nimble enough to respond. It’s one of the reasons we are so passionate about our Gay Men of Color Fellowship, and the innovative work they do to share life-changing information with their social networks in a culturally competent way. It’s this kind of work, an assurance that there is a supportive community out here, that motivates us each day.

Jonathan Ayala
Program Coordinator – Treatment Division