World AIDS Day at the White House

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

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

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

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

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

 

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

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

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

 

 

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

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

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

 

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

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

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

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

 

Addressing HIV Stigma in the HIV Workplace: Training, Technical Assistance & Learning Collaboratives

Ending the HIV epidemic in America starts with addressing HIV stigma in the HIV workplace. NMAC believes the best way to create real change is by building partnerships between people living with HIV (PLHIV) and their Ryan White HIV/AIDS Program (RWHAP) service providers. Thanks to funding from HRSA-HAB, NMAC put together this new stigma reduction program with three different learning modalities: 1) trainings, 2) technical assistance, and 3) learning collaboratives in a program called ESCALATE (Ending Stigma through Collaboration and Lifting all to Empowerment). Click here to find out how to register. Participants can only register if they are part of a team that includes a PLWH and their RWHAP service provider.

NMAC believes the best way to reduce structural HIV stigma is through honest dialogues that are followed with updated policies and procedures that focus on HIV stigma reduction in the workplace. We are looking for real solutions that are client centered. NMAC wants to provide a neutral safe space to have these difficult discussions.

This work will not be easy. HIV stigma sits at the intersection of race, gender, gender identity, and sexual orientation. Because it’s NMAC, we’re going to prioritize race and its impact on HIV services. Yes, we are going there. The solutions are not cookie cutter. We understand the need to tailor policies and procedures. Our efforts will address HIV stigma in the RWHAP workplace. It will not reduce HIV stigma in the larger world.

Trainings are the entry level learning modality. They are for RWHAP funded agencies and PLHIV that are starting to work on stigma reduction. The trainings will bring together teams (providers and clients) to provide an overview of HIV stigma. By the end of the training, teams will develop their first steps to reduce stigma in the workplace. Technical Assistance (TA) is for RWHAP providers who are looking for one-on-one assistance. TA will be specific to the agency seeking assistance and will look at the implementation of tailor-made stigma reducing activities. Learning Collaboratives (LC) are for the advanced RWHAP provider teams (to include PLHIV) who want to be a part of an ongoing group that will implement tests of change using an improvement framework and share their experiences with the other teams. LCs will focus on cultural humility and its role in HIV stigma reduction. We provide different modalities because organizations are in different places among the HIV stigma spectrum, and we want to meet you where you are at.

This HIV stigma reduction initiative is centered on NMAC’s work to end the HIV epidemic in America. There are too many PLWH who have fallen out of HIV care. We believe that providers need to address HIV stigma in partnership with PLHIV. The TA will be provided by Abt Associates, and the LCs will be coordinated by NORC. NMAC will be the lead for the trainings. These learning modalities will start this summer virtually with in-person work slated for 2022. Our stigma reduction efforts are part of a four-year cooperative agreement with HRSA-HAB using the Minority HIV/AIDS Fund. For more information, please email ESCALATE@nmac.org.

Yours in the struggle,

Paul Kawata
NMAC

Paul Kawata

 

 

 

 

 

ESCALATE is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) and the Minority AIDS Initiative as part of a financial assistance award totaling $1,600,906.100 percentage funded by HRSA/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA/HHS, or the U.S. Government.

Who Benefits from Minority AIDS Initiative (MAI) Funding?

In 1998 African Americans surpassed White people as the population with the largest number of new cases of HIV.  After the data was released, 30 Black leaders met with the Centers for Disease Control and Prevention (CDC) to demand action.  The effort was led by Dr. Beny Primm, then board chair of NMAC.  He had NMAC’s Director of Government Relations, Miguelina Maldonado, work with the Congressional Black Caucus, the Congressional Hispanic Caucus, and the Congressional A/PI Caucus to create the Minority AIDS Initiative (MAI).  The goal for the MAI was to build the infrastructure of minority-led community-based nonprofits to minimize the racial divide in HIV health outcomes for African Americans and all people of color.
After 20 years of MAI funding, which communities benefited the most?
From 1998 to 2018, African Americans with HIV went from 39 percent of the cases in 1998 to 41 percent of the cases in 2018.  White people went from 40 percent of the cases in 1998 to 29 percent of the cases in 2018.  The Latinx community went from 19.5 percent of the cases to 23 percent in 2018.  Asians went from 0.78 percent to 1.5 percent of the cases.  American Indians/Alaska Natives stayed level at 0.3 percent.  After 20 years of MAI and other funding, only the White community saw a significant decrease in HIV cases.

That outcome speaks directly to the question the Biden/Harris administration is trying to unpack with the Executive Order looking at racial equity across all government programs: to not just look at how race impacts access and funding, but also how to make the system fair.  They are seeking community input on how to make this happen.

Per an email from the White House:

“Through the Office of Management and Budget, the Biden-Harris administration is soliciting input from stakeholders in the public, private, advocacy, not-for-profit, and philanthropic sectors, including State, local, Tribal, and territorial areas.  This request for information (RFI) seeks answers to dozens of questions critical to the administration’s efforts to advance equity, including how agencies can address known burdens or barriers to accessing benefits programs in their assessments of benefits delivery, and what practices agencies should put in place to reach rural areas and communities that might not be able to visit Washington, D.C., to engage directly with policymakers.

“A link to the RFI can be found at: https://www.federalregister.gov/documents/2021/05/05/2021-09109/methods-and-leading-practices-for-advancing-equity-and-support-for-underserved-communities-through

“Responses are due: Tuesday, July 6, 2021”

I believe the White House understands the system is unfair.  The challenge is how to fix it. NMAC hopes you will respond to this RFI and write about your solutions. As we get ready to prepare our response, I will share our journey.  This question is core to NMAC’s mission.  How do we change the structural racism that is baked into the federal government?
Yours in the struggle,
Paul Kawata
NMACPaul Kawata

Why You Need to Attend USCA!

This year’s United States Conference on AIDS is very important because the federal government will discuss its plan to end the HIV epidemic in America during a USCA plenary, then hold a town hall to collect feedback from attendees. Everyone needs to come prepared to share their thoughts on what it will take to make this happen.

Biomedical HIV prevention has given us real pathways to end the epidemic. U=U, PrEP, PEP, and TasP have made it possible to consider the end. However, it can’t happen without a plan.

While NMAC is encouraged by this development, we are also very concerned about working with this administration. Can we put aside our differences and work together? NMAC hopes the value of planning to end an epidemic that disproportionately impacts communities of color greatly outweighs the difficult politics. This will be a true test of our leadership and there are no guarantees.

There are many communities and organizations who want and need to be part of the process. NMAC supports and encourages multiple efforts. We are particularly excited about our work with the Coalition to End AIDS. Working collaboratively on a document from AIDS United, we will bring a consensus statement to USCA.

Let’s encourage the feds to create a real plan, not some bullshit paper that sits on a shelf. What have we learned over the last 37 years? HIV sits at the intersection of oppression, discrimination, and stigma. When the world turned its back on us, we did not wait to be saved; we saved ourselves and the people we loved. For many years we suffered unimaginable pain as we buried more people than we remember. Now we have the opportunity to build the plan to end the epidemic. What should the plan say about us? While the federal government will have its own process, NMAC calls on them to make community a full and equal partner. The new strategy needs input from the many sectors and communities highly impacted by HIV.

What innovations can we bring along with our efforts to end the HIV epidemic? For example, every time there is an HIV test, let’s also test for STDsand Hepatitis. These sexually transmitted infectious diseases are drivers for each other. Working to reduce any of these infections supports our overall efforts to end the HIV epidemic.

This process has the potential to implode. Community needs to monitor and work directly with multiple federal agencies. The specific agency plans are probably more important than the overall federal plan. HRSA, CDC, HUD, SAMHSA, NIH, NIAID, OAR, and other federal departments need to be accountable to community. We must be at the table as these plans are built, implemented, and reviewed.

The 2018 USCA is all about putting together the federal plan to end the HIV epidemic in America. If you want to be part of this process, then you need to attend the meeting. Just because we ask to be part of the process does not mean we support the final plan. Our support is not guaranteed. It depends on the plan’s level of community engagement, real biomedical HIV prevention initiatives that speak to the realities of the communities highly impacted by HIV, and funding to make it happen. If it’s a good plan, then the 2019 United States Conference on AIDS and the 2019 Biomedical HIV Prevention Summit will focus on its implementation. This is a multi-year effort that needs your engagement from the beginning. See you in Orlando!