Fighting for Older Americans Living with HIV

Last week Congresswoman Suzanne Bonamici (D-OR) sent a letter to the House Appropriations Committee asking the Administration on Aging to study how to better target Older Americans Act funding in support of older adults living with HIV. NMAC thanks the Congresswoman for this important next step in the evolution of funding to care for people living with HIV/AIDS.
When I came to Washington in 1985, I never imagined our movement would be fighting for services for people who are aging with HIV. Working on this issue with many activists, especially older Americans living with HIV, brings so much pride.

Yours in the Struggle,

Paul Kawata

Paul Kawata

Finding Myself

I’m not going to lie. The pressure of work, especially what’s happening in Tennessee and Texas, has taken its toll. Communities highly impacted by HIV are weaponized as part of the fight for the soul of America! The extreme right is passing laws, turning back funding, and working the courts to codify religion’s right to discriminate and they’re winning. “It’s against my religion” is now legal justification to bully, discriminate, and deny access to services like HIV PrEP.

During COVID I got addicted to vacation porn, specifically travel to Japan. This month I got to run away to remember who I am and why I still need to fight. In Japan I am tall. In Japan I am butch. You might laugh, but America stigmatizes me as short and effeminate. So many of the communities highly impacted by HIV are minimized because of the color of our skin, gender, gender identity, or sexual orientation. Our lives are under attack. We are being used to scare people to the polls.

Civil rights, voting rights, women’s rights, abortion rights, gun control, same sex weddings – we’ve changed the world and that’s why they’re fearful. This is not the America of their youth. How far are they willing to go to stop change? For me there is no choice. I can’t go back into the closet. I will not go quietly into the night. I will rage against the dying of the light.

America is in for difficult times with lots of trauma. Their “look over there” strategy makes us the totem that gets their base to vote and give money. It is very expensive to run for President and there are some very deep pockets who want to take America back. Their “hit” list includes abortion, affirmative action, critical race theory, immigrants, guns, HIV PrEP, transgender youth, drag queens, and core HIV prevention funds. 2023 is just the opening salvo of message testing for the next presidential election. Imagine how these actions will traumatize clients, co-workers, and friends.

Normally I don’t talk about my breaks, but it felt important to share my process for healing as our movement gets ready for the fight of our lives. After 34 years as the Executive Director of NMAC, I’ve come to understand that HIV is a marathon and not a sprint. Like so many, I prioritize others and wonder why I am exhausted and tired.

This picture was taken in Tokyo at the teamLab*Planets exhibit. It’s a total immersive experience that lets you see the world in new and different ways. Sometimes it’s important to get out of the day-to-day grind and gift your mind and body with rest and the joy of travel.

I look forward to seeing everyone at the 2023 Biomedical HIV Prevention Summit. Approximately 1,300 attendees will come together to discuss the future of HIV prevention in America. Not only will the Summit update the core HIV prevention tools, but it will do a deeper dive into the political realities facing our work. It’s not enough to end the HIV epidemic by 2030. Now we must do it in a world that hates the communities we serve, a world that hates us. Thanks to the NMAC board and staff for allowing me time off. By sharing my trip, hopefully I’m practicing what I preach. Not only do we need to take care of people living with HIV, but we also need to take care of ourselves. Leaders are no good to our movement if we work to the point of exhaustion and burn-out. I return ready for the next fight!

Yours in the Struggle,

Paul Kawata

National Native HIV/AIDS Awareness Day

I will never fully understand what it means to be Native American/Alaska Native in America, but that does not imply I cannot stand in solidarity with Native people and support their struggle for justice and equality.

In a world with decreasing resources and increasing demand, Native Americans often get categorized as “other” for funding and epidemiological purposes. “Other” is just another way to erase or minimize the importance of their communities, culture, and lives.


In the hierarchy of oppression, resources go to those most in need. Often that leaves “others” with scraps. Make no mistake, the system is set up so that we fight each other rather than the people who make these rules. It is in their interest to keep us in competition with each other and not them. If we ever figure out the way to unite, we could be an unstoppable force.

On this National Native HIV/AIDS Awareness Day, all the communities highly impacted by HIV are all being weaponized as “others.” The extreme right is attempting to use this fear to take back power and control of the courts, legislative bodies, and executive offices and to divide American so that women, people of color, and LGBTQ communities are minimized and marginalized. The reality is that our communities and the people who love us are the majority of Americans, the unstoppable force that scares them into action.

This year is just the opening salvo. They are “message testing” to understand how far they can push the hatred of “others” as their pathway to the presidency. Next year will be a dog fight of the worst kind. Affirmative Action will be the next to go. The courts will also look to outlaw mifepristone or misoprostol. These actions are the upshot of decades of planning, and I am worried. In their reach for power and control, they are splitting our country along lines of race, gender, gender identity, sexual orientation, and guns where a lie can be made to look like the truth. We’re not going without a fight, but they must know that. America does not deserve the years of suffering this struggle will generate. Today is also a call for peace.

Thank you to everyone attending this year’s Biomedical HIV Prevention Summit. Over 1,000 folks have registered or received scholarships. At this meeting our movement needs to talk about the future and get ready for a couple of brutal years where our lives and those of our clients become the targets for their pathway to power and control of America.

Yours in the Struggle,

Paul Kawata

Paul Kawata

A Letter to Walgreens

N.M.A.C. Leads with Race

Stefano Pessina
Executive Chairman
Walgreens
200 Wilmot Road
Deerfield, IL 60015

Dear Chairman Pessina,

Walgreens’ decision to not dispense abortion pills in 21 states, including four states where it remains legal, put the company in the middle of America’s war on women. The fight will not be limited to mifepristone or misoprostol. People living with HIV and/or on PrEP want pharmacies that share their values. This decision says Walgreens knows better than its customers, their physicians, or even the FDA.

Corporations need to understand the complexities of stepping into the culture wars. This decision sent messages to multiple communities that we don’t matter. The HIV community stands with reproductive health because we are all being demonized for political power and control. I’m not sure who thought this was a good idea, but they were wrong. Just look at Disney. They are in a war with Governor DeSantis where everyone loses.

This struggle only further divides your stores from the communities they are supposed to serve. Now consumers must add this new information about Walgreens into their calculus when choosing a pharmacy. Companies making money from HIV or the communities highly impacted by HIV need to connect the dots and understand the commercial consequences of their actions. You can’t fly a rainbow flag in June and turn your back on community the other 11 months. Walgreens went from an ally to just another company that doesn’t support the people who shop in their stores.

Please reconsider. Wait until after the Supreme Court rules. Walgreens jumped the gun and this position will impact the company’s bottom line. What does it say about a pharmacy that will no longer dispense physician prescribed FDA approved drugs? These are decisions that should be left to customers and their doctors. What was Walgreens’ senior team thinking? Please share the calculus because customers and employees want to understand. This decision puts your stock price, senior staff, and employees at risk.

Yours in the Struggle,

Paul Kawata

Paul Kawata

Disney Steps Into It

First, they came for women seeking abortions. Since I did not need an abortion, I did not say anything. Then they came for transgender youth. My kids are not transgender, so I did nothing. Then they came for drag queens. Really?? While I love drag queens, this seems like a diversion. Then they came for me, gay men, and I’m worried about who is left.

If you feel like something isn’t right, you’re not alone. Our communities are under attack in America’s courts, state legislatures, and governors. This is the culmination of 50 years of planning. The word “woke” is really a dog whistle. It says the world is changing and you may not like the direction. “Woke” now divides America along lines of race, gender, gender identity, whom you love, and the right to bear arms. It leaves a two-class society where one side decides how everyone else can live, work, love, own guns, and have access to healthcare.

Tennessee is ground zero in the fight. Not only has the Governor turned back core federal HIV prevention funding, but he also signed state bills that would ban gender-affirming care for transgender youth and restrict drag performances in public. These actions are coordinated, and our movement needs to be worried about other states.

Texas’ 88th Legislative Session has 3,605 house bills and 1,610 in the senate. Getting through these bills takes time, money, and cooperation between state and national activists. While there are some good bills, an initial review showed multiple pieces of legislation targeting communities highly impacted by HIV. We need to monitor what gets out of committee. The number of bills makes this task overwhelming.

The Weber Standwick Collective recently invited me to speak to some of their corporate clients. I talked about Disney and how the CEO got caught flat footed. The old days of staying neutral are gone. The culture wars are here and companies must choose a side. In the case of Disney, the CEO tried to be neutral, but that got him in trouble with employees. Talent is a key factor for how companies are valued. Disney’s staff, particularly their creative teams, want their employer to share their values. The CEO overcorrected into a war with Governor DeSantis. In truth, the governor was looking for a fight. Ultimately, the CEO lost his job, and Disney’s stock took a huge hit. In this upside-down world, these decisions have real financial consequences.

Corporations understand their markets are at risk. The culture wars mean work force destabilization and chaos. Every CEO needs a strategy before their backs get pressed to the wall. Until the markets decide, at least in Tennessee, hundreds will lose their jobs, thousands will lose access to HIV prevention services, and an unknown number of American will get HIV because they were not educated about disease prevention.

Just because you live in a deep blue state, do not assume you are immune. Key to the 50-year plan was control of the Supreme Court. They are using the courts to legislate nationally on abortion, affirmative action, voting, student loan forgiveness, and gun control. I worry about the Texas case on HIV PrEP and the ACA. Their real goal is to destabilize the ACA by getting rid of the Prevention Task Force.
There are good people working hard to figure out solutions not only for TN, but also for the rest of the country. Given the political climate, it is a difficult needle to thread. How to work around the governor without escalating the fight? Disney showed the wrong way, can HIV do better? Like Disney, federal leaders cannot be neutral. You tried last time with the DEBBIs and EBBIs. Our movement spent too much time and money on programs that tried to placate conservatives but could not be scaled at the levels needed to end the epidemic. HIV testing, PrEP, and PEP are the best HIV prevention tools, but they require cooperation and collaboration from the communities hardest hit by HIV. Like Disney employees, HIV prevention, care, and treatment must share the values of the communities we need to reach. For HIV that means gay/bi men, particularly gay men of color, the transgender community, and Black women.

Yours in the Struggle,

Paul Kawata

Paul Kawata

The Future of HIV Prevention

With this letter, our movement enters a new phase of HIV prevention…

HIV prevention used to be about testing, PrEP, and PEP. Our movement must now figure out how to work around Governors, state legislatures, and/or the courts as they work to deny, stop, or turn back federal HIV support. This is not a fight anyone wants, and the struggle has almost nothing to do with HIV, and everything with the communities highly impacted by HIV. We’ve been weaponized by bullies to prove they are anti-woke.

For decades we’ve fought against the virus and prioritized disease prevention, care, and treatment. Now the people we service, people like me, are vilified for political gain. This is not about the effectiveness of PrEP or HIV treatments. The medications work. For the court case in Texas, it’s about Christian employers who don’t want to pay for HIV PrEP for gay men and challenging the way members of the Prevention Task Force are selected to throw the ACA into chaos. The lower court agreed, asserting the Religious Freedom Act gives these employers the right to discriminate like the case of the baker who did not want to make a wedding cake for same sex couples. Except with this win, the courts are denying access to HIV medications based on the sexual orientation of the employee. NMAC believes there is a huge difference between not baking a cake vs. denying access to live saving medications. In Tennessee (TN), we are not sure why the Governor made this decision. There were no reviews of the state’s prevention programs, so this decision has little to do with HIV in TN.

Since this is the first state to turn down their core HIV prevention funding, there is no playbook. We are working on solutions with only months before the May 31st deadline. Thank you CDC for working so closely with community, NMAC appreciates your collaboration. TN is a deep red state and solutions are different in places with a supermajority in the state legislature. NMAC is working with local agencies along with multiple national partners to figure out meaningful solutions.

While HIV used to enjoy bipartisan support, more and more the people we serve are caught in the crosshairs of the culture wars. Like Title X, the HIV movement needs workarounds that directly fund FQHCs, community-based organizations, hospitals, pharmacies, universities, and healthcare providers. People living with HIV need healthcare and meds for the rest of their lives and people on PrEP need healthcare and meds for as long as they are sexually active. Actions in TN will impact multiple systems. Pharmaceutical companies, universities, hospitals, research institutes, pharmacies, and health systems have billions at risk. These corporations cannot be neutral and need to step to the table with real money to fight back against misinformation. I believe HIV is too big to fail but worry about the amount of pain that will be inflicted by bullies using us for political gain.

As too many already know, these actions are really about hate, prejudice, and discrimination. Another lesson in HIV stigma that our movement understands all too well. The stakes could not be higher. Hundreds could lose their jobs, thousands access to HIV prevention services, and an unknown number of Americans will get HIV. NMAC will address these challenges by…

2023 Biomedical Summit Plenary
Join us for an important plenary at the 2023 Biomedical HIV Prevention Summit on the Future of HIV Prevention in America. The session will be coordinated by NMAC’s Coalition for Justice and Equality Across Movements. Toni Newman will work with Tennessee and national partners to discuss critical next steps. The Summit will work to prepare attendees for the next phase of HIV prevention, fighting to keep our federal HIV support.

Tennessee State Gathering
NMAC is interested in holding a gathering in Tennessee after CDC has a work around. The gathering needs to happen prior to the May 31st deadline; however, it can’t happen without the CDC. They are very interested in our conversations. Given all the issues, CDC’s participation needs to be cleared by legal.

Other State Gatherings
While we hope it won’t happen, NMAC is concerned that other states could follow TN or Texas. Let’s all stay in close communication. What happens in TN can be a template for other states. NMAC is willing to support additional gatherings. While most states are well organized, I’m concerned about the ground game in some regions. Our state borders are porous. Work, funding, and sex are all interrelated.

Coalition Across Movements
This fight is so much bigger than HIV. It’s about what divides America: woke vs. anti-woke, race vs. racism, gender, gender identity vs. sexism, and the fear/hate of homosexuals or anything outside of the mainstream. The same sex marriage law is amazing, but that legislation also affirms religion’s right to discriminate. The unintended result is to codify actions by Christian employers in Texas. Now more than ever, the HIV movement needs to work and build support between movements impacted by these anti-woke policies. Together we can be a force for good.

Taking Back the Narrative
Our movement needs to take back the narrative. We’ve allowed their fear of who we serve to drive the discussion. Let’s tell the stories of lives we saved, the science developed, and people who are still here after being told they were dying. Nothing we do will make us acceptable to those who hate us, we’re trying to reach our natural allies. There are plenty of people who disagree with the divisive work of people at the extremes.
NMAC is working with The Raben Group to get our stories out, but these efforts take everyone. The Raben Group will put together a training at the 2023 United States Conference on HIV/AIDS to educate our field about the multiple platforms open to HIV messages. We don’t need The New York Times; we can tell our own stories ourselves.

In the early days, we were fighting for our lives, literally. Friends and partners were dying and too many turned their backs on us. It was confusing and scary. This time it’s about bullies and not the virus. Please be part of the Biomedical HIV Prevention Summit or the United States Conference on HIV/AIDS to be part of the solution. Bullies have a vision for America that criminalizes, marginalizes, and denies access to HIV meds for the communities highly impacted by HIV. We cannot let them define us or our country.

Yours in the Struggle,

Paul Kawata

Paul Kawata

National Black HIV/AIDS Awareness Day

On National Black HIV/AIDS Awareness Day, NMAC will partner with Paramount Pictures to educate their employees on HIV in the African American community. I want to thank Harold Phillips, Director of the White House Office of National AIDS Policy, for agreeing to keynote. I’ve asked him to talk about the need for authentic stories about HIV that inspire and remind viewers that our fight is not over.

Here’s the truth: our movement and the people we serve are in the crosshairs of a political fight for our lives. Communities highly impacted by HIV are being demonized for political gain. Between the anti-PrEP court case in Texas and the state of Tennessee’s decision to turn back their core HIV prevention funds, we are under attack. Stories are critically needed to humanize our struggle so we can be seen as the s/heroes we are and not predators or groomers.

It is time to take back the narrative, to share the importance and success of HIV prevention and care, and to tell our stories through the people we service. It will not always be pretty, but it is real. I will never forget Pandora Singleton and Project Azuka. As a southern Black woman, she not only fought to care for HIV positive women, but she also fought against the stigma and racism facing Black women in America. Her story, particularly at this time, needs to be told.

It’s time to build the case for why HIV prevention and care are essential health services, to talk about fighting an epidemic and not people with HIV, and to document our successes so the public understands it’s about disease prevention and not lifestyle promotion. NMAC is working with Propper Daily to tell the stories of young Black women (cis & trans). The campaign will be released at the 2023 Biomedical HIV Prevention Summit. To nominate women to be part of the effort, please contact Gabriella Spencer (gspencer@nmac.org).

This afternoon, at 1:00 PM ET, we will hold an NBHAAD Facebook Live event with community leaders talking about how they are currently making history in the fight against HIV. Please join us at Facebook.com/NMACCommunity.

On National Black HIV/AIDS Awareness Day, commit to telling the stories of the s/heroes in the struggle and to remind America of the importance of our work. We must define ourselves and not let a false narrative be the story.

Yours in the Struggle,

PK Signature

Paul Kawata

A Letter to CDC on Tennessee

NMAC leads with race

Jan 31, 2023

Dr. Jonathan Mermin
CDC
Atlanta, GA

Dear Jono,

As you know, HIV/AIDS sits at the intersection of so much that divides America. What happens when core HIV prevention funding gets pulled? We are about to find out. Tennessee (TN) decided that as of May 31, 2023, the state will no longer accept 1802 and EHE HIV prevention dollars. This decision has the potential to create chaos across multiple systems.

All of this is happening when TN is in the news because of the killing of Tyre Nichols. There are multiple political agendas and HIV is caught in the crossfire. Governor Lee took these steps without consulting the health department, CDC, the White House, or the local community. We are still not clear as to the motive, and I don’t think his office will be very forthcoming. Given the make-up of the state legislature, there is little hope for a local solution.

Not only is 1802 and EHE funding at risk, but so is 340B support. Without core funding for HIV prevention, how will PrEP programs happen? 1802 also give agencies without pharmacies access to PrEP and 340B support. No 1802/EHE means limited PrEP outreach. That results in decreased 340B funding. People will lose their jobs, some agencies will close, and, ultimately, more folks will get HIV.

CDC could do a work around by directly funding the local United Way. The TN health department already uses them to distribute and monitor 1802 and EHE funding. Can the federal government shift by the May 31st deadline? How the administration responds could impact our work in other deep red states.

Disease prevention should never be a political pawn. This fight is not about our work, it’s about who we serve. The amount of chaos, money, jobs, and people’s lives that could be impacted are so much bigger than most people realize. I urge the CDC to move quickly and stealthy. This is not a war that any of us wants, but we will fight.

Yours in the Struggle,

PK Signature

Paul Kawata

Welcome Toni Newman

NMAC is pleased to welcome Toni Newman (tnewman@nmac.org) as our new director of NMAC’s Coalition for Justice and Equality Across Movements. I got to know Toni when she was the acting Executive Director of the Black AIDS Institute. Her leadership and unique understanding of the intersectional nature of HIV made her ideal for NMAC.  Toni’s book, I Rise–The Transformation of Toni Newman is the true story of her transformation from an internally conflicted male to a proud, pre-operative transsexual. Born the eldest son into a strict Christian family, Toni knew from her earliest days that she “was a different bird born in the wrong body.”

This year is NMAC’s Love Letter to Black Women and Toni is part of that commitment. The agency prioritizes leaders with “lived experience” from the communities highly impacted by HIV.  Toni will bring together movements including and beyond HIV to stand for justice and equality. The world feels very unsafe for people who are different. NMAC believes alliances are the only pathway out. Individually, we are too small, but look what happens when we fight together.

As a Black Transgender Woman, Toni sits at the intersection of the communities who are demonized by extremists. Her life belies their narrative. But she’s going to need your help. None of us can do this alone. This must be a group effort. NMAC hired Toni with unrestricted dollars. We hope to get corporate and foundation support because responding requires money. The HIV movement needs a strong NMAC who can fight back during these difficult times.

Last week we got disturbing news from the state of Tennessee. There were many calls to discuss strategy. What works in a blue state may not work in a deep red one. Like HIV prevention, there is not one size fits all and we need to follow the local community. The last thing they need is for nationals to go stomping into their business.

Here’s what you should expect from NMAC,

  • We work in partnership.
  • The agency listens to and follow the local community.
  • We want to help with our DC connections; however, sometimes they might be more of a hinderance during these divided political times.
  • NMAC fights for all the communities highly impacted by HIV.
  • Our work is connected to a much larger struggle for justice and equality in America.

In the new Congress, things are happening in the Rules Committee and the debt limit that should give everyone pause. It seems like the next two years will be fighting just to keep the status quo and there are no guarantees your DC based agencies can make that happen. A CR (continuing resolution) is a win in this Congress. There are very real extremists in the House who will bankrupt the nation to prove their point. They are playing Russian Roulette with our future and we all lose.

The Partnership to End the HIV, STDs, and Hepatitis epidemics recently met to determine our 2023 priorities:

1. Maintain and Grow Federal Appropriations for HIV, STD, and Hepatitis programs

  • Funding for National PrEP Initiative
  • Recast a continuing resolution (CR) as a win
  1. Defense Against the Extreme Measures in Congress
  • Concerns about efforts to target communities highly impacted by HIV
  • Especially impact on Transgender Community
  1. Protect Harm Reduction
  • Specifically Syringe Services Programs (SSP)
  1. Ending the HIV Epidemic (EHE)
  • Funding levels: Support White House request for $900 million
  • National PrEP Program as part of our EHE strategy
  1. Push for Syndemic Solutions

I hope NMAC shows by our words and deeds that we are committed to working collaboratively and to fight for the communities hardest hit by multiple epidemics. The war is starting and it’s time to get ready.

Yours in the Struggle,

Paul Kawata

Paul Kawata (circa 1979)

I’m Bringing Sexy Back

If you haven’t noticed, I love being gay. For me, it’s a gift from my creator. I appreciate and celebrate my inability to fit into the mainstream. My innate understanding of fashion, color, and musicals did not come from my birth family. It was my chosen family who helped reveal those gifts. Core to my queerness is the desire for men. The 2023 Biomedical HIV Prevention Summit is April 11-12 in Las Vegas and we are leaning into desire, sex, and responsibility to better understand how to reach communities highly impacted by HIV. Per a recent New York Times article, we want to bring sexy back to fight HIV.

There is an age restriction on the web site and no federal support will be requested because we don’t want to get anyone into trouble. To end the HIV epidemic, our work needs to reach sexually active adults. The lack of sex positive approaches means HIV prevention misses many of the communities we need to reach. PrEP and U=U must speak to leather, kink, and cos play communities. To be part of the sexual networks that include swingers, sex workers, and the apps. Oh my.

Discussions about sex must also highlight consent, responsibility, and disease prevention. The Summit is during STI Awareness Week. According to the CDC, “STI Awareness Week, observed the second full week in April, provides an opportunity to raise awareness about STIs and how they impact our lives; reduce STI-related stigma, fear, and discrimination; and ensure people have the tools and knowledge to prevent, test for, and treat STIs.

CDC estimates that about 20 percent of the U.S. population – approximately one in five people in the U.S. – had an STI on any given day in 2018, and STIs acquired that year cost the American health care system nearly $16 billion in health care costs alone.”

As part of our 2023 love letter to Black Women, the Summit will host a conversation between Black Women on sex and intimate partner violence (IPV).  According to the Kaiser Family Foundation, “IPV can and does occur among all groups, some groups face higher rates of violence. 57% of multi-Racial women, 48% of American Indian/Alaska Native, and 45% of Black Women report facing IPV in their lifetimes (and those shares are likely to be under reported due to a variety of factors). Social class, LGBTQ identification, and disability status are also associated with higher rates of IPV. Among HIV positive women, IPV is even more prevalent, reported by 55% of women living with HIV. In addition to the traumatic impact IPV has on all women, the experience of trauma and violence is also associated with poor treatment outcomes and higher transmission risk among HIV positive women.” The Summit is going to address sex in a responsible way that speaks to pleasure, consent, responsibility, and HIV prevention.

Critical Summit Deadlines

You need a paid registration to make a hotel reservation. Your confirmation email will include a link to make a reservation at the conference hotel. To learn how to submit an abstract, register online to join us on Jan 19th at 1 PM (Eastern)/10 AM (Pacific) for a webinar.

There will be explicit discussions about sex, so do not attend if this makes you uncomfortable. Sex and sexuality are complex issues that are missing in too many of our current efforts to get people on PrEP and people living with HIV on treatment with an undetectable viral load. Thank you, Gilead, for being the Presenting Sponsor.

Yours in the Struggle,

 

 

 

 

 

 

 

 

Paul Kawata (circa 1979)