Category: Blog

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

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,

Paul Kawata

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,

Paul Kawata

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

2. Defense Against the Extreme Measures in Congress

• Concerns about efforts to target communities highly impacted by HIV
• Especially impact on Transgender Community

3. Protect Harm Reduction

• Specifically Syringe Services Programs (SSP)

4. Ending the HIV Epidemic (EHE)

• Funding levels: Support White House request for $900 million
• National PrEP Program as part of our EHE strategy

5. 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 (circa 1979)

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

• Registration deadline March 13th
• Scholarship deadline is Feb 13th
• PrEPpy Awards deadline is March 1st
• Abstracts deadline is Feb 6th
• Exhibitor deadline is March 6th

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)

Kim Ferrell is NMAC’s Deputy Director for Operations. She’s been with me and NMAC for over 16 years, longer than any boyfriend. She is the heart and soul of the agency. Kim plans on retiring next year, so to say thank you to her and all the other sheroes, 2023 is NMAC’s love letter to Black women (cis & trans). Like we leaned into Puerto Rico last year, the 2023 United States Conference on HIV/AIDS will celebrate and honor Black women. They are the backbone of NMAC and our work. USCHA is September 6-9 in Washington, DC at the Marriot Marquis. A special Black Women’s Summit will proceed the gathering. The Opening Plenary will tell their stories and celebrate their magic. Their experiences will be highlighted in workshops, institutes, posters, and special events.

NMAC owes so much to so many. We will celebrate Black Women across our movements, from activists to women living with HIV, national advocates, community voices, federal leaders, heath department staff, healthcare workers, and researchers. There are also many important women focused organizations. NMAC will tell multiple stories.

Black women play key roles at NMAC, starting with our founders, Rashida Abdul-Khabeer (formerly Hassen), Sandra McDonald, and Marie St. Cyr to our staff Tara Barnes-Darby (26 years @ NMAC), Alison McKeithen (15 years @ NMAC), Shantá Gray, Diane Ferguson, Asia Moore, Gabriella Spencer, and Lauren Miller to our long-term board members Valerie Rochester, Evelyn Ullah, and Monica Johnson. Black women have been instrumental to NMAC and our movement. Unfortunately, we’ve also lost many warriors like Natalie Cole (NMAC’s first major donor), Linda Jackson (OAR), Pandora Singleton (Project Azuka), Barbara Joseph (NBWHAN), Janet Cleveland (CDC), Dr. Dawn Smith (CDC), Juanita Williams, Dr. Janet Mitchell (Harlem Hospital), and the heart-breaking list goes on. Who are the women you want NMAC to remember, honor, and celebrate?

As part of our commitment, NMAC will also work to support and hire Black women owned small businesses. The agency challenges our sponsors, donors, and government partners to use these businesses and to hire Black women, especially Black transwomen. We must put our money where are principles live. Recently I had the opportunity to visit Queen Victoria Ortega at the Connie Norman Transgender Empowerment Center. They are an incubator for small trans owned businesses. I visited a t-shirt company they are starting. Our movement buys so many t-shirts, so please support the vendors who come from the communities highly impacted by HIV. It’s not always about getting the cheapest t-shirt. You may pay a little more, but you are also building community.

We need to invest in the communities highly impacted by HIV. The world is not fair and, without extra support, our work will miss too many of the folks we need to reach. As we honor Black women, it is also important to acknowledge that HIV PrEP outreach misses too many. We can and must do better if we are to hit the 2025 goals for ending the HIV epidemic by 2030. We can’t end HIV without reaching Black women.

There will be a special scholarship pool for Black women for USCHA and the 2023 Biomedical HIV Prevention Summit in Las Vegas on April 11-12. Our goal is to double the number of scholarships to accommodate all the extra scholarships for Black women. Information about these scholarships will go out in February when the USCHA website goes live. Summit scholarships are open to apply.

Growing Leadership Opportunities for Women (GLOW) @ NMAC
Linda Scruggs started GLOW (Growing Leadership Opportunities for Women) at NMAC. The program is now led by Gabriella Spencer (gspencer@nmac.org) As a young Black cisgender woman, she represents the future. GLOW aims to build robust, sustainable leadership among women of color living with or at risk of HIV. GLOW is grounded in “social entrepreneurship,” where highly innovative individuals and groups are supported to bring their ideas to members of their own community. GLOW is designed for cis and trans women of color.

NMAC aims to recruit 20 women from five different regions. Although the project is designed for women of color generally, in 2023 GLOW will prioritize Black women with Latinx women to be the focus in 2024. Participants can apply for mini-grants ($500) to support local GLOW trainings. Up to 12 GLOW participants will be selected as mini-grant recipients to plan and implement their trainings. GLOW will convene twice annually in wellness summits. These summits will review experiences to implement GLOW mini-grants and build a strong, sustained, national network of women of color for HIV advocacy, leadership development, and social support.

I am grateful to all the Black women mentors who guided and shaped me as a leader. They gave me courage and taught me to never let anyone take my light. To Kim, I will miss you like you don’t know. I’m glad we have a year to celebrate you and other Black women sheroes. As I’ve learned from doing this work, some people are in your life for a moment and others a lifetime. Celebrate and thank them because time passes much too quickly.

Yours in the Struggle,

Paul Kawata w/Kim

This morning, the US Prevention Task Force for the Affordable Care Act reaffirmed their commitment to HIV PrEP. They looked back over hundreds of studies, particularly new studies for injectables, to again document that HIV PrEP is scientifically safe and effective. While NMAC appreciates this added review, we don’t think it will stop a court case on HIV PrEP that is making its way through the Texas. Using the Religious Freedom Act, some Christians are asserting that they should not have to pay for HIV PrEP because it goes against their religious values. If this sounds familiar, it’s because the same argument is used by some Christian bakers who do not want to make wedding cakes for same sex couples or some Christian website developers who do not want to create websites for same sex couples.

The result of this court case could be legal discrimination that makes LBGTQ Americans second class citizens. The radical right’s strategy is about controlling the courts and using bogus lawsuits to do what can’t be accomplished legislatively. HIV PrEP is just a Trojan Horse. Their goal is to use religion to exempt Christians from providing services to homosexuals and to throw the ACA into chaos.

This afternoon, the President will sign The Respect for Marriage Act. This is an amazing and wonderful outcome, but it won’t stop the extreme right. Unfortunately, there is a robust exemption for religious organizations in the Act. The bill that guarantees our right to marry also codifies their right to discriminate. It remains a question of freedom and democracy for all Americans. This is not a fight that any sane individual wants to have right now in the middle of multiple epidemics, war, recession, race relations, abortion, don’t say Gay, and a world that seems out of control, yet here we are.

Unfortunately, right now, the HIV movement is playing checkers while the extreme right plays 3D chess. We are not ready for the tidal wave that is about to hit us and so many other movements. NMAC’s primary commitment is to the HIV movement; however, we believe the HIV community cannot go at it alone. We are too small and have too few voices. Our movement is dependent on government support to provide HIV research, treatment, housing, care, and prevention services. Losing means the degradation of the HIV infrastructure. Ultimately, they could argue via the courts that some Christians should not have to pay for the care or prevention of HIV because it’s against their religious beliefs. Can Congress or the Administration stop an activist court? What is the HIV movement’s role? What is NMAC’s role?

This is my last musing for 2022. I hope you have a wonderful Christmas and New Year. Thank you for your support. It is not OK that certain communities are using HIV PrEP as a Trojan Horse to blow-up the Affordable Care Act and discriminate against the LGBTQ community. I want you to know that NMAC continues to urgently fight for all the communities highly impacted by HIV. In the ’80s and early ’90s, I witnessed too many friends die before they could become the amazing leaders they were supposed to be. We were robbed, and our community will never know how much it lost. Our fight continues in their memory, to make the losses matter, to make sense of the pain and sorrow, and to use their examples to teach the world.

Yours in the Struggle,

Paul Kawata

2022 was NMAC’s 35th anniversary and another one for the record books. This is my regular yearend wrap-up and request for support. I hope you will consider donating.

No one had MPox or the Supreme Court in their plans at the start of the year. NMAC, like so many, had to pivot to address these new unwanted challenges. The link to NMAC is the agency’s commitment to the communities hardest hit by HIV. Unfortunately, we sit at the intersection of everything the radical right hates. They are using HIV PrEP to throw the Affordable Care Act into chaos. Our work is the target of their bigotry and discrimination. The 5th Circuit is their pathway to SCOTUS and our movement must work with other movements to stop them. The issues are much bigger than HIV; however, the Christian Right choose PrEP as the trojan horse to backdoor the ACA. NMAC is concerned about their challenge to the way the Prevention Task Force members are appointed. We hope there is an administrative fix.

Monkeypox in the US was reported just last May. Like HIV in the early days, it mainly impacted sexually active gay and bisexual men, particularly Black and Latinx gay men. Thankfully there was a vaccine. Using an innovative solution that allowed one dose of vaccine to help up to five people, the number of new cases dropped, particularly for White and Latinx gay men. Unfortunately, that was not the same for Black gay and bisexual men. Like HIV, this is another inequity that must be addressed. I am concerned the White House’s announcement will turn MPox into another unfunded sexually transmitted disease. Health departments, STD, and HIV agencies will argue about responsibility and community will not get the services they desperately need. It’s time for systemic solutions that are based and led by the communities being impacted. NMAC calls on the White House, HHS, and CDC to return a portion of the Minority AIDS Initiative back to its original congressional intent.

This year the radical right played their hand. Justice Thomas clearly laid out his agenda for state attorneys general. Their strategy is much bigger than Roe. They want to reshape America and HIV sits at the intersection of everything they hate. Most of you know me. I’m not crazy, and this email sounds a little insane. I’m our canary in a coal mine that warns the movement about impending challenges. I hope I’m wrong.

With all these new challenges, our efforts to end the HIV epidemic have stalled. The STD numbers are bad. Gay men, people of color, and youth continue to experience higher levels of syphilis and gonorrhea. I’m not saying this to sex shame anyone. In fact, I think we need to put the sex back into our HIV, STD, and Hepatitis prevention programs. Mark your calendars now for the 2023 Biomedical HIV Prevention Summit, April 11-12 in Las Vegas. We can’t let fears about retaliation stop us from doing our jobs and that includes America’s sexual and reproductive health.

Everything is piling on and the world sometimes feels out of control. We did not want it, we do not choose it, but there is a war coming and HIV is in the middle. November gave me a little hope but, with a divided Congress, I worry. We need the FY23 budget passed and signed during this lame duck Congress. That’s why NMAC hosts World AIDS Day events in Congress. Thank you to Joe Huang-Racalto and NMAC staff. The congressional participation was significant, even though it was a business day on the Hill. We are grateful to over 100 members of Federal AIDS Policy Partnership and the Partnership to End the HIV, STD & Hepatitis Epidemics who attended along with 21 hill staff. This is how the work gets done. It is a grind. There are thousands of organizations and movements fighting to get Congress’s attention. The HIV movement is well served by the number, diversity, and experience of the agencies and people working on the Hill. With another new divided Congress in January and the 2024 Election, will anything get done?

Thank you for standing with NMAC and the HIV movement. Please consider a year end gift to our important work. Our work to end the HIV epidemic has taken a turn. HIV PrEP is being used to create chaos for the ACA under the guise of religious freedom. While it seems crazy that we might re-litigate these issues, that’s what the new court means. We are watching their years of planning come to fruition. Anyway… have a great holiday.

Yours in the Struggle,

Paul Kawata

It started with a text from Jono Mermin at the CDC saying Janet Cleveland had passed. I thought it was a mistake, so I did not respond. It still does not feel real. I’ve attended too many memorials or celebrations of life. It never gets any easier and the losses keep piling up.

I imagine Janet had some tough times at the CDC. As a black woman who did not have a medical degree, the CDC in the early days were tragic. Systems were built by white straight male researchers to mostly benefit other white straight male researchers and doctors. At the same time, Janet was the face of CDC to many in the field. She was the first person community called when we had an issue with the HIV bureau. As I would too often say, it’s nothing personal, it’s my job. Poor Janet saw me go off about one thing or another, yet she always smiled and took my calls.

Back in the ’90s, Janet Cleveland, Julie Scofield, Frank Beadle de Paloma, David Holtgrave, and I were the motley crew that worked to put on the Community Planning Leadership Summits (CPLS) that transformed into the HIV Planning Leadership Summits (HPLS). We came together to visibly demonstrate how the CDC can work with health departments and community. Through this process we formed a bond that I miss. Going to Atlanta for Janet’s funeral made me realize how long it’s been since I’ve attended a CDC or NASTAD consultation.

That little dig would usually get me a call from Janet that started, “well Paul, you have to understand…” Image being stuck between me and the CDC. I know it’s not fun and that’s why I respected Janet. At her funeral I learned that she was a good Christian woman, and I will not hold that against her.

This has been a tough year and I have one more in December. I’ve always admired Paul Monette’s ability to find love and joy in the middle of the plague. I was the opposite. The more I lost the more I cut myself off from others. The pain and loss were too much. I needed to protect my heart. My generation was damaged but carried on. We changed the world. The price was heavy, and we continue to pay.

There is a storm on the horizon called the Supreme Court. The 5th circuit is their template for getting cases to SCOTUS and HIV PrEP is in their sights. They are thinking much bigger than HIV PrEP; they want the Affordable Care Act. This case could back door the ACA and throw it into chaos. The impact on the lives of people living with HIV is unimaginable. Are we not ready for this fight?

Janet lived her life with grace and kindness. She was good to our community because she came from our community. Her death is a loss for our movement, and I truly worry for our work to end the HIV epidemic. This Thanksgiving I am thankful for Janet Cleveland and all she did to support community and our work to end the epidemics.

Yours in the Struggle,

Paul Kawata

Yours in the Struggle,

Paul Kawata