Posts of: NMAC

The 2023 United States Conference on HIV/AIDS host hotel is sold out. The meeting had a record number of early bird registrations. Rooms are still available at overflow hotels; however, they are very limited. Register for the conference to get access to the hotel booking system. Regular registration closes on August 4, 2023. Rooms in the host hotel have been set aside for scholarship recipients.

This year’s meeting is a Love Letter to Black Women. The inspiration came from our desire to honor Kim Ferrell, NMAC’s Deputy Director. After 18 years at the agency, she is retiring. Like so many Black women, Kim is the heart and soul of NMAC, the glue that holds us together, especially during difficult times. She brings stability while I go off on another wacky tangent. NMAC would not be NMAC without Kim and the Black women (cis and trans) on our staff, board, and community advisory panels. Black women are 50% of staff and 50% of the senior leadership team. The conference team is all Black women led by Tara Barnes who has worked at NMAC for almost 25 years. I celebrate all of them.

We want to hear about the Black women who volunteer, staff, and lead our movements efforts to end the HIV epidemic in America.  Please help us write our love letter for the collective tribute. The deadline is July 14th. Tell the stories of the black women who have made an impact. USCHA will hold up women living with HIV, elders, case workers, mothers, researchers, teachers, and upcoming leaders. Let’s give them their flowers.

2023 USCHA prioritizes Black Women via a special track of workshops:

• “Changing the Narrative One Survivor at a Time”
• New Nickels, A Journey of Black Women and HIV Stigma
• Using Photovoice to document HIV Care barriers for Black Women
• Pleasure Principle: Brown Sugar Vol PrEP
• SHEBoutique: Healthcare that never goes out of style
• Unbreakable Spirit: Championing PrEP and Co-Regulation for Black Women
• Movement Building with Immigrant Black women living with HIV
• Intergenerational Resilience Spaces for Black Women Living with HIV
• “HIV Possible” Centering Faith Based Resources and Direct Service WOC
• Tile in PPT –Black Women in HIV: The Challenge to Being Effective Leaders
• For Us by Us: The Forgotten Black Women in HIV
• Unexpected: Supporting the Needs of Black Mothers Living with HIV
• “Risky-A Talk Test Treat Conversation” The Power of Social Influencers
• Truth Telling: Conversations on Recruiting Black Women in HIV Research
• UPDOs! A salon based PrEP uptake intervention for Black Women
• Retention in Care for cisgender and transgender Black Women
• Self-Care as Activism with the Black Women’s Prevention Green Book
• TWIST: A CDC Supported Intervention Co-Authored by Transgender Women
• Ending the HIV Epidemic: Black Women, HBCUs, & PrEP Uptake

Here is the list of some of the workshops that includes tracks on 1) Best Practices in Telehealth, 2) Biomedical HIV Prevention, 3) Ending the Epidemic, 4) Public Policy, 5) Race & Racism, 6) Stigma and Prioritizing PLHIV, 7) Treatment Research & Information, and 8) Curated and poster presentations. This is not a final list as other workshops are being curated by partners.

The Opening Plenary will be our movement’s Love Letter to Black Women. Tara has pulled together an advisory committee of cis and trans women to tell stories about the central role Black Women play in our efforts to end the epidemics and to celebrate Black Girl Magic.

There are many other exciting plans and all will be revealed. This year’s meeting is also a lesson on “how to be an ally.”

According to Texas Christian University:
Allies at TCU actively engage with LGBTQIA + students in an open and affirming way. All TCU students need to be fully and authentically welcomed, as they are. Making sure classroom discussions, interactions and assignments are inclusive and welcoming of LGBTQIA + people is essential. Students focused on creating safety within friend groups and organizations allow LGBTQIA+ students to authentically engage with their community and peer groups. Every member of the TCU community bears the responsibility of being an ally.

According to the Harvard Law Review:
We view allyship as a strategic mechanism used by individuals to become collaborators, accomplices, and coconspirators who fight injustice and promote equity in the workplace through supportive personal relationships and public acts of sponsorship and advocacy.

How does the HIV movement stand in allyship with Black women? USCHA works to be inclusive. We welcome everyone, especially communities highly impacted by HIV. During these politically divided times, how to be an ally across movements is core to building a world without hate. I know you know that. It is the big lesson of the HIV movement. Fighting back and working together, we changed the world.

Yours in the Struggle,

Paul Kawata

At 16 I realized feelings for my best friend were about to become a problem. I’m sharing my coming out story because there are too many working to define this pivotal moment in my life as shameful and wrong. They are using my community and my life for their political gain by telling lies about what it means to be LGBTQ.

After decades of HIV prevention work, our movement knows to prioritize people with lived experience and not folks who have no understanding, but lots of judgements. My story is about a kid who didn’t want to be gay because good Japanese boys were supposed to fit the mold of the model quiet American. I spent the rest of high school failing to suppress my sexual feelings and looking for a way get “fixed.” Back then nobody talked about being gay. We wrongly thought it was something shameful. I hid and suffered until I needed therapy. In truth, I hoped counseling would cure me. When people say being gay is a choice, they have no idea of the harm they are causing for kids who are confused and scared by feelings they don’t understand and can’t control.

I was that little boy who could not hide his gayness. My mouth opens, and a purse falls out. I was born this way. From an early age, I loved Barbra Streisand, the Supremes, and musicals much to the bafflement of my parents. You could say it was in my DNA. That’s why I know being gay is not a choice. Who would choose a life fill with stigma, discrimination, and threats of violence? At the same time, you can’t taste freedom and not want to be free. As Americans, we innately understand this proposition. Being gay is who I was meant to be and praying to God would not change that reality.

In college I could live a lie and be miserable or open my heart to love. We were both pledging the same fraternity. It was the kind of love that is only for the young. Full of drama, testosterone, and keeping our love a secret. The closet is an awful place to live. While I wanted to tell the world, the culture was not ready. So, I began my lifelong journey to reconcile my desire for men with the good Japanese boy narrative. If I was going to be homosexual, I wanted to be a great homosexual. It was the late ’70s at the height of the EST movement, and I turned to Gay EST, the Advocate Experience to be part of the vanguard who believed we could change the world by coming out to friends and family. The act of speaking our truth held immense power. I still believe in coming out. Sharing my story is how I heal my life.

This photo was taken at the 1979 San Francisco Pride Celebration. I’m marching with my new family from the Advocate Experience behind a banner that would bring me great pride in my old age. This photo marks the exact moment I came out to family and friends because it was on the cover of the San Francisco Chronicle. Surprise! I was blessed to find my new family. They helped me understand and believe I was OK. Their values formed the foundation for my activism, I am Gay and I Love You. Three years later, an unknown virus would again change the course of my life. I never strived to run a national organization. Back then no one wanted these jobs. It was considered career suicide. Like so many, I had no choice because people I loved were getting sick and dying. I could not live with myself if I did nothing. Like many, I jumped blindly to fight an epidemic that was scary and completely unknown. It was not without a cost. I still work to manage the trauma from the early days of the epidemic. I would be lying if I didn’t acknowledge the sadness and grief that sits in my soul. For me, it’s the combination of growing up Gay in America with the trauma of fighting the HIV epidemic in the early days that defines my life and the lives of so many who came of age at that time.

Margaret Heckler, President Reagan’s Secretary of Health, and Human Services said we would have a vaccine in four years. I told my family in Seattle that I would be gone four or at most five years. Little did I know. Little did we all know. The story of fighting HIV is that of bravery and courage in the face of great adversity. I will not allow others to control our narrative. We are not groomers or pedophiles. The implication is offensive and wrong. We are heroes who changed the world and saved our people. HIV is no longer a death sentence. We built a healthcare infrastructure from nothing. Working in Washington, our community created and maintains multiple federal budget lines that annually provide billions in support. Activism not only changed the FDA drug approval process, but it also gave meaning to our lives. We even got money from the Trump administration to end the HIV epidemic in America. Don’t tell me we can’t achieve the impossible.

There is a whole generation coming of age in the 2023 era of trauma and vilification of the LGBTQ community. It is real shit right now and will only get worse with the Presidential election next year. I worry for the future. Then I remember that we stand on the shoulders of heroes. To the 16-year-old boy, I say look at me now. This picture was taken when I was a marshal at DC Pride. Our history documents our strength. Overcoming adversity is in our DNA. It took a long time and many tears for that scared boy to become this outrageous Queen. While I am still a work in progress, coming out and speaking my truth changed the trajectory of my life. Happy Pride everyone!

Yours in the Struggle,

Paul Kawata

Happy Pride! Pride Celebrations across the country are facing real challenges concerning the safety and health of attendees. Not only are we concerned about HIV and a resurgence of MPox, but the threats of violence are real. If our work was not difficult enough, now it must be implemented in an environment that is hostile to the communities we need to reach.

NMAC holds lots of regional meetings and recently we’ve noticed a shift in the treatment of our guests. There is a significant increase in the level of disrespect and dour behavior in some regions of the country, particularly staff working in deep red states. As a result, NMAC is rethinking where and how to hold meetings. Safety for attendees was always considered when making site selections, now it is a priority.
While it’s disheartening to acknowledge the existence of violence against the communities hardest hit by HIV, here are some initial strategies that were crafted by ChatGPT for this e-newsletter:

1. Develop a comprehensive code of conduct: Clearly outline expected behavior and explicitly state that discrimination, harassment, or violence based on HIV status, race, gender, sexual orientation, or gender identity will not be tolerated. The code of conduct will be prominently displayed and communicated to all participants and hotel staff before and during the conference.
2. Provide staff training and education: NMAC will offer workplace support on inclusion, allyship, and understanding diverse gender identities and sexual orientations. Educating hotel staff about the issues faced by our communities can help foster empathy and respect.
3. Implement a reporting system: Create a confidential and easily accessible reporting mechanism for incidents of harassment, discrimination, or violence. Encourage participants to report any incidents promptly and ensure that appropriate actions are taken in response.
4. Engage security personnel: For our larger meetings, NMAC will have visible security personnel present at the conference venue to deter potential acts of violence or harassment. Make sure security staff are trained in LGBTQ sensitivity and are aware of the specific safety concerns faced by the community.
5. Foster an inclusive culture: Emphasize the importance of inclusivity and respect through keynote speeches, panel discussions, and presentations. Encourage speakers and presenters to use inclusive language and promote diverse perspectives throughout the conference.
6. Promote networking and support: Facilitate opportunities for participants to connect and support each other. Host networking events, discussion groups, or mentorship programs specifically designed for individuals attending the conference.
7. Conduct risk assessments: Prior to the conference, conduct a thorough risk assessment to identify potential safety concerns and address them proactively. This can include reviewing the venue’s security measures, considering emergency protocols, and ensuring the accessibility of facilities for all attendees.
8. Regularly evaluate and improve: Gather feedback from participants after the conference to evaluate the effectiveness of safety measures and identify areas for improvement. Incorporate suggestions and lessons learned into future conferences to continually enhance participant safety.

In addition to your physical safety, our movement needs to stay diligent about HIV and a resurgence of MPox. Here are some general guidelines to help mitigate the risk of transmission:

1. Promote vaccinations: Encourage participants to be up to date with their vaccinations, including routine immunizations and any specific vaccines recommended for the region or specific risks associated with the conference location. Encourage attendees to consult their healthcare providers for guidance on appropriate vaccinations.
2. Communicate health guidelines: Provide clear and accessible information to all participants about preventive measures, such as hand hygiene, respiratory etiquette (covering coughs and sneezes), and proper disposal of tissues. Display posters or signs promoting these practices throughout the conference venue.
3. Ensure proper hygiene facilities: Make sure the conference venue has easily accessible handwashing stations equipped with soap, water, and hand sanitizers. Regularly restock these facilities to maintain hygiene standards.
4. Encourage safe practices: Remind attendees to practice safe behaviors, such as using condoms, U=U, PrEP, or PEP. Provide free condoms.
5. Implement infection control measures: Work closely with the hotel staff to ensure proper cleaning and disinfection protocols are in place, particularly for high-touch surfaces such as doorknobs, handrails, and restrooms. Provide ample waste bins for proper disposal of tissues and other waste.
6. Facilitate testing and counseling services: Collaborate with local healthcare providers or organizations to offer voluntary testing and counseling services for HIV or other relevant diseases. Provide information on testing locations and encourage participants to take advantage of these services.
7. Maintain a healthy environment: Ensure the conference venue has adequate ventilation to improve air circulation and reduce the risk of airborne transmission. Consider organizing sessions in open-air spaces whenever possible.
8. Stay informed and follow local health guidelines: Monitor updates from local health authorities and follow their recommendations and guidelines regarding disease prevention and control measures. Stay informed about any specific risks or outbreaks in the area where the conference is being held.

This e-newsletter was created with the support of ChatGPT. Artificial Intelligence (AI) is changing the way we work. Remember, creating a safe environment requires ongoing commitment and vigilance. By implementing these measures and promoting a culture of respect and inclusion, everyone can contribute to making meetings safer for all participants.

Yours in the Struggle,

Paul Kawata

I’ve known Wayne for years; he is part of Samaritan Ministry. His email promoted a phone call where together we decided to hold a zoom with community-based organizations in Tennessee. He invited local colleagues, and I invited the Partnership to End the Epidemics (AIDS United, NASTAD, NCSD, NMAC, and the AIDS Institute) as well as Lambda, Funders Concerned About AIDS, and the Southern AIDS Coalition. For the next four  months we would meet on a weekly zoom to share information, concerns, and support.

On top of the loss of federal HIV prevention funds, there was also a 340B impact that was not as obvious. HIV PrEP uses FDA approved medications. Community organizations depend on 340B revenue to run their agencies. Given the state’s rejection of core HIV funds, would CBOs also lose their 340B funding? There are more 340B dollars then core federal HIV prevention support in Tennessee. Solutions needed to also address this important source of revenue.

The first calls were about setting ground rules and building trust. The Tennessee community needed the nationals to understand that what worked in deep red states is different and we needed to follow their lead. Like we’ve learned over the years with HIV prevention, there is not a one size fits all solution. The Tennessee strategy had to work in an environment where the state legislature had a super majority of Republicans who were also going after the transgender community, drag queens, and other legislators. HIV was just another in a long list of ways to remake their state. Tennessee became a flash point for the culture wars in America.

Building trust was difficult, especially when leaders don’t get along. The divisions were particularly challenging between local jurisdictions. Unfortunately, Tennessee like so many other states, created an environment of mistrust due to the competition for money and resources. This happens all too often, especially when there is not regular communication and partnership building between agencies. NMAC hopes this was not a one-off experience. Please consider a statewide coalition that can increase trust and support through regular communications.

Folks quickly realized there would not be a state legislative solution, so the group turned to the White House and the Centers for Disease Control and Prevention. This is where the nationals played a key role. It’s taken decades for our movement to build relationships with key federal agencies and every four years this could change. Back in the Reagan administration, much of our support came from closeted officials who were always looking over their shoulders. Now we get invited to the White House without having to hide. For Tennessee, the White House stayed out of the discussions because they understood the President could be a lightning rod. Our coalition worked primarily with the CDC while keeping the White House informed.

The biggest challenge in working with the CDC was the lack of time. I got Wayne’s email on January 19^, 2023, and the state was turning back funding as of May 31, 2023. Moving government bureaucracies takes time, especially one as large as the CDC. Could we get them to move in a timely fashion and what was the direction they needed to move?

None of this would have happened without CDC’s cooperation and leadership. The nationals became that annoying pest that kept bugging them into action. It started with having the CDC join our weekly calls to hear directly from community about the impact of the governor’s decision. You were able to paint a picture that only people working on the frontlines can share. CDC saw you as the heroes.

I don’t know what happened internally at CDC, but they were able to move in a timely fashion and follow our recommendation to fund the United Way as a neutral third party. While it may have seemed effortless from the outside, I know this was not as easy lift. As I was told, there was lots of support to do the right thing, but there were systems and approvals that need to be followed. Nimble is not a word that is usually associated with a government bureaucracy. What makes CDC’s solution so important is that it built the playbook for what to do if other states take similar actions.

Friday is our last call and I want to say “thank you.” You are heroes in the fight to end the HIV epidemic in America. It’s been my honor to work and get to know you. Together we showed our movement that local, national, and federal leaders can not only work together, but also accomplish the impossible. I hope not to see you again, especially for the joyous celebration when we end the epidemics.

Yours in the Struggle,

Paul Kawata

What are the lessons to be shared about the early days of the epidemic? By my 28th birthday, I attended and/or planned the funerals of so many friends that I lost count. The trauma is real. Over the last decade, I’ve continued to lose friends to suicide, drug addiction, and murder. Trauma from the early days never seems to go away. It impacts how I see the world and my self-worth. It comes from lots of deaths, and too much prejudice and discrimination. In my small circle of friends, more than half are dead. Like so many who came of age at the start of the epidemic, we suffered the unspeakable that continues to this day. To all of you who have found peace, please share. It has eluded this old Queen. I think it’s why I stay. I’m waiting for the end.

Right now, too many fools get platforms to speak vile untruths about the communities highly impacted by HIV, especially the transgender community. How do we live in a world where politicians, church leaders, and “concerned citizens” are calling us groomers and pedophiles? They are storming school board meetings to get books banned, passing legislation to stop healthcare for our community, and letting us know that we are not welcome in their America. It isn’t just the transgender community watching and worrying about these actions. Important players are calling out strategies that lean into the culture wars because they understand the cost of civil wars. Part of our job is to connect the dots so that multiple communities understand that we are all in this together.

In the middle of this insanity, how do we work to end the HIV epidemic in America? Especially in this deeply divided country?  Our work cannot be divorced from whom we serve. We need to prioritize HIV testing, PrEP, and PEP. Long acting injectables are a game changer, but I worry about the uptake in communities of color. HIV cannot continue to work in a silo. We must look for systemic solutions. That starts with other sexually transmitted viruses.

We cannot allow their hatred to slow our progress. If that happens, then they win. While most of the news looks bleak, we recently had a win in Tennessee, but we don’t want to draw attention to it. When the governor turned back core HIV support, our movement got tangled in the culture wars. NMAC worked with national, community, and federal partners to create a work around that is trying to fly under the radar. What makes this solution so important is that it sets a precedent should other states consider similar actions. It took lots of coordination and leadership to make this happen. Hopefully it documents the value of national partners and the need to work across sectors.

The ‘80s are my reference point for how bad things can get. While life is currently awful, we have survived worse. Recently I learned the Transgender Law Center (TLW) has a $13 million annual budget. That reality brought much joy and pride. TLW was inconceivable back in the ‘80s and now they have an annual budget that is bigger than NMAC’s. I celebrate them and all the communities working to end the HIV epidemic. We are stronger than we understand.

Yours in the Struggle,

Paul Kawata

I wish I could say I had the foresight to hire Toni Newman because I understood how the right would weaponize the transgender community. Unfortunately, I am not that smart. It was the constant punching down that clarified NMAC’s responsibility. Toni is the Director of NMAC’s newest program, Coalition for Justice and Equality Across Movements. After the court case in Texas and the governor’s decision in Tennessee, NMAC understood the need to build a bigger tent by working in coalition with other movements who are also under attack.

Given the onslaught of hate against her community, I’ve asked Toni to step into the spotlight, and she needs your support, especially as the world propagates lies, misinformation, and violence against her people. As a transgender Black woman, her voice and those of her peers are central in the larger culture wars. The transgender community shoulders the burden of over 450 anti-LGBTQ pieces of legislation. Please read Toni’s Op-Ed that was published in The Hill.

Key Message: Health Equity
A key message for why other movements want to work in coalition with NMAC… HEALTH EQUITY. Across movements, leaders shared how they could get behind a coalition that prioritizes this critical issue.  As we know, communities of color, the LGBTQ+ community, and many economically-disadvantaged groups don’t have access to the health care they need. It’s an issue that impacts tens of millions of Americans, and leaders across movements shared their interest to build a coalition that prioritizes tangible ways of advancing health equity.

The transgender community is taking it on the chin. Our movement needs to elevate their voices and be an ally in the fight. With all the hate from the right, the stories of transgender heroes need to be told in their beauty, complexity, and challenges. It is not easy to be transgender in America. I’m sharing this information to be transparent as NMAC works to give Toni a bigger platform. During this difficult political moment, we will lead with Toni in our outreach to media and work across movements.

The way America treats the transgender community becomes a mirror for our country’s support of people who are different. To everyone’s frustration, they are trying to fit square pegs into round holes. This struggle will define our nation for generations. To humanize the people that they vilify, NMAC enlisted The Raben Group for support with communications. During this difficult political moment, we need professional help, especially working the corridors of power in DC. This firm is part of a larger strategy to get NMAC and our movement ready for the culture wars. I’m concerned this will be a war like we’ve never seen. It’s already started with the multiple pieces of legislation, the banning of books, and the erasure of the right to an abortion.

The HIV movement must stand in coalition with other movements to support the multiple communities under attack. This includes abortion, equality, gun control, adoption, affirmative action, immigration, and the myriad of issues disproportionately impacting our families. We are stronger with others and it’s time to build bridges across movements.

As we’ve always said, the messenger is as important as the message. Putting Toni in this role is how we live our values, but it won’t work without your support. It’s about fighting for all the communities highly impacted by HIV and holding-up the voices of the oppressed.

Yours in the Struggle,

Paul Kawata