USCHA Host Hotel Sold Out

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

Paul Kawata

NMAC’s 50+ Strong & Healthy 2023 Mini Grants

HIV 50+ - Strong & HealthyEach year, NMAC is proud to support several of our 50+ scholars as they implement projects in their local communities designed to impact older adults living with HIV. This year, we’re excited to announce the five projects that have been awarded a $2,500 mini grant. Many thanks to the scholars who have designed these community projects, and their local community collaborators who will help implement the project. Read more about our grantees below.

Kneeshe Parkinson and RISE IMPACT

“HERSTORY IS COURAGE” will create a community of storytellers to combat HIV-related stigma and improve health through treatment adherence. This is a homegrown, community-informed and evidence-based intervention. We will utilize a three-stage peer-led discussion group to address social determinants of health, promote vocational development, increase social health support, and decrease isolation for women over the age of 50 living with HIV. The program will be implemented by RISE IMPACT (Rejuvenate, Influence Self- Elevation on Impact), an organization dedicated to educating, strengthening, and empowering women, youth, and families. RISE IMPACT provides life-changing outcomes for marginalized communities.

Charles Debnam and Community Wellness Alliance Collaborative

Living Tobacco Free (HIV+ and Aging): Through focus group discussions, this project aims to gather information and data that will help identify ways the Aging HIV+ smoking community can quit smoking. Participants will receive a presentation called, “Healthy Lifestyles,” which addresses the history of tobacco, the harms it causes, and where to get help.  We will then engage participants in a focus group-style discussion on why they smoke, challenges they have with quitting, and look at what type of messages either on TV, social media etc. they would like to see to help them quit and who best to deliver these messages. Focus groups will only be open to 50+ individuals living with HIV who smoke.

Franklin Sampley and Affirming Christian Fellowship

This grant will expand a scholarship program specifically for those who are 50+ to attend the Affirming Christian Fellowship conference.  The goal will be to build community through ongoing support for those who are a part of the LGBT Christian community and living with HIV, with an emphasis on those 50+. During the conference, we will conduct a workshop/panel discussion with those living with HIV and church/ministry leadership, have a luncheon for face-to-face meeting time with the scholarship recipients, have a lounge for those living with HIV, and have a display table for materials related to HIV prevention, treatment, and ministry.

Alicia Diggs and SERO Project

“Paint and Learn for a Healthier You” is a project designed to help teach cisgender women 50+ living with HIV some fundamentals around nutrition, healthy eating, and self-care. This event will include:

  • Sharing tips on shopping for healthy food on a budget
  • How to meal plan and prep stress free
  • Therapeutic painting to offer emotional release of stress or anxiety with hopes of giving participants reminders to focus on self while having fun

The anticipated outcomes of this half day seminar for 20-30 cisgender women who are 50 years of age and older living with HIV, will result in them having learned healthier eating habits, meal prep ideas on a budget, and holistic self-care while having fun doing it. It is anticipated that participants will gain more power over their health needs and share what they have learned with others in their family and in their community.

Stephanie Laster and Lepena Reid and Diamond Ministries Inc.

Women over 50+ aging with HIV require comprehensive health care and health education to manage and prevent multiple comorbidities. Our project will serve 10 women living with HIV in the southern United States in this effort. We will have 5 one-hour virtual sessions. Our outcomes consist of reducing fear, anxiety, and isolation among those aging with HIV in the south and to improve health literacy among these women. We will have pre and post-test assessments, polls, and evaluations after each session. We will have a guest speaker for each session, including Infectious disease physicians, HIV research study professionals and community advocates.

My Coming Out Story

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

Paul Kawata

Aging With HIV: Recognizing Unique Needs and Challenges

As medical advancements have made it possible for people living with HIV to lead long and healthy lives, a new issue has emerged: aging with HIV. With over half of people living with HIV in the United States over the age of 50, it is crucial to recognize this population’s unique challenges and needs.

One of the biggest challenges facing older adults living with HIV is the increased risk of developing multiple age-related illnesses, such as heart disease and osteoporosis. This is because HIV causes chronic inflammation and damage to the immune system, leading to a higher risk of developing simultaneous conditions earlier than the general population.
Many older adults living with HIV face social isolation and stigma, which can negatively impact their mental health and overall well-being. They may also experience discrimination from health care providers who are unfamiliar with this population’s unique needs, or who still maintain a bias against people living with HIV.

Aging with HIV comes with challenges but also opportunities

In addition to addressing these challenges, it is vital to recognize the positive aspects of aging with HIV.

Many older adults living with HIV have developed resilience and coping skills over time, and they can serve as role models for younger generations. They also bring a wealth of knowledge and experience to the HIV community.

To address the needs of older adults living with HIV, we must focus on developing specialized health care services tailored to their unique needs. This includes providing access to age-appropriate medical care, mental health services, and social supports. We also need to work to reduce stigma and discrimination, both within the health care system and in society at large.

As we progress in the fight against HIV, we must recognize and address the unique challenges facing older adults living with the virus. By providing specialized care and support, we can help this population continue to live healthy and fulfilling lives, while also honoring the valuable contributions they make to our communities.

Paul Kawata

Paul Kawata                 Ramsey Alwin
Executive Director      President & CEO
NMAC                            National Council On Aging

Safety

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

Paul Kawata

Dear Tennessee

N.M.A.C. leads with race
Dear Tennessee Colleagues,

Friday is our last call. At the beginning of the year, none of us knew we were about to become best friends. While NMAC had concerns about Texas, Tennessee was not on our map. Your governor brought us together in what might be called a shot gun marriage. This was an important test for our movement. Could local, national, and federal agencies work together to figure out real solutions? This was the first time a state had turned back their core prevention funds, so there was no precedent. However, there was lots of fear. Would other states follow Tennessee? Given the numbers, NMAC was particularly concerned about Florida and Texas. And we still are concerned.It started with an email from Wayne Smith:

“Hello Paul. This is Wayne Smith from Knoxville, Tennessee and Samaritan Ministry reaching out about some issues with HIV prevention in Tennessee. I don’t know if you have heard, but our governor is pulling all CDC funding for prevention from our state. I think he is attempting to replace CDC funding with state funding so that he can control who gets prevention messaging and care. This looks to me like it is an effort to politicize HIV prevention and exclude people that he doesn’t think deserve this kind of service, especially the LGBTQ community. I wonder if this would be something that might be an agenda for other red states that want to control to whom services are provided. If you would like to discuss this with me to see how NMAC might be involved, please call.”

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 192023, 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

Paul Kawata

What the Early Days Taught Me

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

Paul Kawata

Health Equity

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

Paul Kawata

50+ Reflections on the Summit

NMAC was proud to bring several 50+ Strong & Healthy scholars to this year’s Biomedical HIV Prevention Summit. Scholars attended workshops and plenaries, networked with other attendees, and advocated for the needs of older adults living with HIV and other Long Term Survivors. Read their reflections on their experience at the Summit:

 

The 2023 Biomedical HIV Prevention Summit was astounding. I felt the theme of sex positivitywas felt throughout the conference and especially in the opening plenaries. The speaker taking off their clothes and having vulnerable conversations in a casual manner spoke volumes as to what can be achieved across different levels of comfort.  The workshops and abstracts were very informative. This Summit is the first time I have ever learned of Doxy PEP to prevent Chlamydia and syphilis infections if treatment begins after 72 hours of exposure.  The summit inspired me to learn more of the usual PEP we use for HIV prevention and how it can be used with Doxy PEP for patients that are at higher risk of exposure or have come in for treatment of chlamydia or syphilis within short periods of time. In addition, I enjoyed the exhibit hall that provided insights on efforts both locally and nationally. The inclusion of many black women was inspiring, even if there aren’t enough programs to support black women. Furthermore, I continue to learn more from the Spanish-speaking sessions that helped me gain a deeper understanding of the barriers to care in immigrant communities. Being in the 50 plus group, and being the only vertical, highlights the work that needs to be done for those of us who are lifetime survivors.  I look forward to using what I have learned in this Summit, especially in advocating for Doxy PEP, programmatic support for black women, and equitable access to care to the Latinx community. Since returning from the conference, I have worked with patients to fix auto English translation issues with their mobile devices so they may understand their forms in their language. I am grateful for the opportunity to learn and grow the voice of the people born positive.  Nestor Kamurigi (Rogel) 

 

My name is Bobby Avalos, and I have been HIV Positive since 2003; yes, that’s 20 years. I joined HIV 50+ Strong and Healthy just this last year. Through my Struggles, Triumphs, Adherence, and Advocacy, I have “Adapted My Life, To Live my Life”. One day at a time.  

I am humbled and honored to have been this year, and I attended the 2023 Biomedical HIV Prevention Summit. As I entered the Summit, I began thinking of this next phase of my life, turning 50. I found myself rekindling the first days of my HIV Diagnosis in 2003. It is no wonder I had new concerns, questions, attitudes, struggles, goals, triumphs, and new ways of advocating for myself and others in my community who are 50+. 

I really enjoyed the plenaries. This summit really engaged the topic of Sex. How we see it, 

How we do it, how we express it, and how we enjoy it. I felt myself feeling so Heard, so Validated, so Uplifted, so Supported, and so Encouraged and Excited to continue having great Sex. In the very opening Plenary of the Summit, I heard and received this statement, from one of the Presenters, Rodney McCoy, that gave me so much Life…. “HIV lives with me. I was Here First.” This opened my eyes, not only with and for my HIV Health, but for my HIV 50+ Strong and Healthy Advocacy going forward. Bobby Avalos 

 

Sex is Natural Sex is Fun: The Politics of Pleasure in the Age of Pandemics 

I liked the message of accepting pleasure. It gave us the insight to be able be ok with what makes us feel good and how important that is.  Sexual liberation was a clear message at that plenary. The presenters and performances were great. I especially loved Victoria Von Blaque (who I got to ride home to NY with on Jet Blue) and everything she represented. I also loved that one of the presenters disrobed and had a chat with us nearly naked modeling how we can be comfortable in our own skin. 

The introduction of the concept of making HIV Prevention healing-centered, taking trauma to joy, was a powerful message, as well.   

It was also wonderful to see Paul dancing and pulling people from the audience up to dance, so much fun. 

Workshop#1 CIS Can We Talk  

This was a great sharing experience with discussions on how PrEP language is not speaking to women and how Black Women Centered care is needed. We discussed the over sexualization of women starting at an early age that has added to the shame we often feel as women about our bodies. It was truly an opportunity to share openly and honestly having provided a safe space for women. This was a powerful workshop and I left feeling empowered as a Black Woman. 

Missing Something 

With that being said, there was something that I felt needed to be added. From the marketing of the event to all the representation there needed to be some representation for older adults. The marketing, advertisement and images at the venue were missing that representation. As an older adult sexual being, I wanted to see me reflected in that event, knowing that we are still a vibrantly sexually active community. It’s hard to find them but those images are out there.  

The highlight of the Summit for me was meeting up with Monica Johnson, Founder and CEO of H.E.R.O.E.S. I met her 28 years ago when she attended a training sponsored by WHO (World Health Organization). I did a workshop on presentation skills and had the privilege of meeting her then. It was at that event Monica first got the seed money for her organization. Through her dedication and motivation, her organization is still in existence, helping people living with HIV. She has achieved so many accolades since then and she is still a beautiful humble soul. I’m so happy I got to hug her and chat with her. So overjoyed she is  doing well and I’m so proud of her. It made my entire day to run into her after all these years. That’s what I love about the NMAC Conferences and Summits, they provide opportunities to bring us all together, to love on each other and say job well done keep up the good fight. 

Thanks again for the opportunity, I love my 50+ Strong and Healthy Program family. Denise Drayton

 

The 2023 Biomedical HIV Prevention Summit in Las Vegas was amazing. I attended with the 50+ Strong and Healthy Cohort. Some were my friends, and others I didn’t know. I wish there had been a networking event for those 50+ to get better acquainted with each other. We’re aging together; we can relate and should connect. And I think a friendly evening event with perhaps drinks would make a great networking atmosphere to do that. 

The host hotel was terrific, and the room was beautiful, with a glorious view from the 50th floor. I’ve never been so high in a building in all my life. I loved that I didn’t have to leave the hotel’s safety to eat, get a drink, or have fun, party, and unwind. I think that is as important an element of any conference as the plenaries or workshops we attend because we work hard and long all the time; we don’t have off days because we’re constantly checking our emails and schedules. So being able to unwind, relax, and network together is vitally essential for seasoned advocates. 

The opening plenary was ammmaaazzzzing!!! It was so much fun to watch. The beautiful men were a perfect touch, and the pole dancers were terrific. I just totally loved the whole theme of sex and kink positivity. We must do that more. The speakers were great. I loved them all but loved that women were well-represented by amazing women. 

Overall, I think the conference was excellent, and I had a great time. I needed it. Thank you so very much for the opportunity!!Katie Willingham 

 

This was by far one of the best conferences I have attended, and this is the first time I have been to the HIV Biomedical Summit. I think it could have been longer since there were so many sessions that I wanted to attend. I absolutely loved the Plenary’s topics and speakers.  My first session was “Understanding Taboo Sexuality, from Queer Sex to Bug Chasing.” This session was fascinating since it made many people uncomfortable talking about sex and seeing them come out of their shells by the end. I think it is a great thing that this conference was around sex. Talking about sex is so important, especially in HIV care and prevention. The next one I attended was a long overdue topic, “No fats, No Femmes, No Asians.” I am part of the Asian Community, and this topic must be talked about to me. The Asian community is also one of the most underserved when it comes to talking about sex and HIV. Attending this session was very empowering, and I have applied for a position on NMAC’s Constituent Advisory Panel. I hope to see more Asian Community members attend these conferences either as a topic hosts or just attending.  

Thank you, NMAC, for this opportunity. I am very grateful to be a part of your community. Rob Ingwerson 

 

A family reunion is how any conference feels. The 2023 HIV Biomedical Summit was no different—being around so many people living with the same stigmatized & criminalized virus I live with and those who paved the way for me to be as healthy and thrive as I do. Priceless!  

The opening plenary was terrific –sex positivity and never being ashamed of who we are and what we want in life is how I raised my children.  I genuinely feel this country will be a better place when we succeed in getting this message out.  Deondre Moore’s salute to Black Women was impressive beyond words.Queens have brought more to our society than they have been given credit for and deserve to be lifted up.  Dr. D and talking about how Trauma-informed care is healing-centered and how we need to make HIV Prevention also healing-centered, which means focusing on the PLEASURE and the JOY of the people we serve. PREVENTION THAT SUPPORTS DESIRE.  Our JOY is HIV Prevention IT IS NOT HIGH RISK. 

I went to several sessions on Tuesday. One was “Sex, Baby: Let’s tell stories about you and me,I had to stand up and ask, “Where are the voices of those over 50, aging with HIV? As a person who acquired HIV at the age of 45, I will live a long life, but what can I expect? What help is there for us?” I feel that they do not put enough emphasis on those of us aging in any arena around HIV., PrEP isn’t geared towards us. In any way, really.  Going forward, I hope to change that with my story and shouting from the rooftops that “WE MATTER. 

I also attended the “Missing Voices: Engagement of CisHet Black men in HIV” workshop. So many heterosexual men are missed in research, marketing, and other areas of HIV; we need to make sure their voices are heard!  I feel we need to NORMALIZE testing & PrEP for EVERYONE & ANYONE having sex, no matter what!!! 

I am very honored to have been chosen to attend the summit as a 50+ cohort member, and I will take what I learned and use it within my community. – Sonya Milliman

 

The 2023 Biomedical Prevention Summit in Las Vegas, Nevada – what an honor to be selected as a 50+ Strong and Healthy Scholar. 

It was a great theme, Sex and Pleasure. The Opening Plenary was awesome and insightful. “If you can’t talk about sex, how can we talk about HIV prevention?”  “Jubilant!!”  “Black Woman are Gold.”  It really calmed the inhibitions, reduced the stigma in the room and simply was a conversation while providing information and tools that can be used when talking to people in the community about HIV, STI’s and PrEP.  I felt validated because when I have conversations with Older Adults about Sexual Health, I lead with we all got here through sex and it helps them to relax, open up, and participate in the discussion. 

I got some great catchphrases out of the plenaries, as well. “HIV is living with me; I was here first.”  “Pleasure-based strategies work.”    

The workshop titled, “Hey Cis, can we Talk…? Black Women Sexuality and PrEP,” was full of information and I left the session with more tools for my HIV Prevention tool kit.  Do you know the most common STIs associated with vaginas?  I do now. Listening to five Black Professional Women present this information was rewarding and uplifting. “You are kind, you are smart, and you are important.”

I stepped out of my comfort zone and participated in a video conversation – “Letter to a Black Women.”  Each time I share my experience/story and challenge my fears I am empowered more to speak up and speak out. 

Our 50+ Scholars meeting  brings me back to a safe space to share, cry and gain more freedom from the stigma of it all. Thank you. 

The Closing Plenary was outstanding.  “You will never get to the End of HIV, if you don’t end it for Black Women”. 

So, I left the Summit full of hope, tired, and with both a question and a charge.  The question– How do you develop a medication that Black and Latinx Older Adult Women were not in the trials, outreach and marketing and then ask the same population to be okay with taking medication and pushing the narrative? The charge- 1)” For Us, From Us, By Us” 2) What will our action look like 3) GLOW 4) We will not be an afterthought.Victoria Graves-Cade 

 

Reflections on the 2023 Biomedical HIV Prevention Summit

This year’s Biomedical HIV Prevention Summit was a risk. I’m sure some thought we were crazy. Honestly, I had concerns, especially in this political environment. Thank you to the over 1,300 attendees. To be clear, there was no federal funding for the meeting. In fact, most feds stayed away. I understand, especially right now. NMAC is very privileged to talk about issues that others can’t, especially people in government. It is also hard for some to fully comprehend the damage caused when every day on the news your people are called sick and demented because of whom they love or how they express their gender. Attendees are requested to submit their final Summit evaluation.

Communities highly impacted by HIV are demonized and weaponized in the courts, state legislatures, governors’ offices, and churches. Their prejudice and misinformation create my communities’ trauma and shame. Folks are making impossible decisions about how to live, especially if they reside in a deep red state. Families with transgender children are literally moving. NMAC celebrates what bigots try to vilify. That’s why the 2023 meeting was so transformative. We do not accept judgements from people who have not walked in our shoes. We are more than enough.

Open discussions at the Summit shined a spotlight on the trauma and shame felt by too many. Even the most evolved of us are suffering. This amazing email helped to crystalize my thinking…

“There was something different about this conference—something magical and for me, transformative.  Even as I sit here writing this message and reminiscing on the last two days, tears are starting to well up in my eyes.  I’ve spent the last several hours trying to figure out why this particular conference evoked such strong emotion from me.  Is it because of the looming legal perils that our communities face?  Is it because of the raw emotion that was felt in the room during the plenaries?  Is it just being so angry and tired of constantly being under attack for being who I am?  The answer to all of these is a resounding ‘yes.’”

HIV is mostly sexually transmitted, yet we’ve minimized discussions about sex because it makes us and our donors, especially government donors, uncomfortable. Politics drive the message and too many HIV prevention efforts have bought into that shame. When the extreme right calls us “groomers” or other ridiculous lies, we validate their stupidity when we stay silent. Sex is something to be celebrated and treasured. I hope the 2023 Summit reminds our movement to never apologize for who we are and whom we love.

Being the oldest Queen in the room, I remember when explicit discussions about sex were essential to HIV prevention. Our movement had to educate gay men about condoms using bananas. It was revolutionary. Over time and thanks to pharmaceuticals, the conversation moved to taking your meds and being adherent. Yet safe sex and not transmitting HIV remains a major motivator for why people go on PrEP or become undetectable.

There is something very liberating about a standing room only space where presenters talked about HIV prevention and sex without shame or judgement.


How does this political environment impact the Biomedical HIV Prevention Summit? We wanted to announce the 2024 meeting in Tennessee but decided against it. Rather than make a political statement, the safety of attendees comes first. Some may think this is unnecessary. Just know LGBTQ organizations are getting Department of Justice briefings about how to manage the safety of events during these divided times, especially with Pride in June. Yes, it is that bad. Look for an announcement later this year.

Thank you to everyone who joined us. You are heroes in the fight for equality and justice in this crazy world. This meeting was made possible thanks to our Presenting Sponsor, Gilead. I look forward to seeing YOU at the 2023 United States Conference on AIDS. The 2023 USCHA is NMAC’s love letter to Black women (cis & trans).

Yours in the Struggle,

Paul Kawata