Category: Blog

The politics of HIV and AIDS can be difficult. Sometimes you have the best of intentions and it still goes wrong. Last week we made a mistake and I apologize. My Facebook post on the United States Conference on AIDS name change set off a firestorm of comments that I hope this e-newsletter will clarify.

NMAC is committed to People with AIDS and the Denver Principles. I was in the room when the Principles were finalized. In 1983, for reasons that are still unclear to me, I was recruited by Richard Dunne from Gay Men’s Health Crisis to come to Washington, DC to be the first executive director of the National AIDS Network. My founding board included Tim Wolfred from the San Francisco AIDS Foundation, Paula Van Ness from AIDS Project Los Angeles, Larry Kessler from AIDS Action Committee of Boston, Jim Graham from Whitman-Walker Clinic, and Michael Hirsch from the PWA Coalition of New York. It was Michael who vouched for me. Because of him, I was at the second meeting for what would become the Denver Principles. I was just a kid, yet there I was in the room with all of the heroes of our movement. It is Bobby Campbell, Bobby Reynolds, David Summers, Michael Hirsch, and Michael Callen who taught me about activism and speaking truth to power. I vividly remember Michael Callen and Michael Hirsch fighting about strategy like men who knew they were dying and the Denver Principles were their legacy. I am also one of 33 founders of the National Association of People with AIDS (NAPWA) and I am the last one alive. Whether it was a conscious decision or not, there needed to be one negative person in the room who could remember. That job fell to me. I seldom speak about my HIV status because I believe it is implies a privilege that really shouldn’t matter. However, it is my honor and responsibility to remember the stories and to call out the names of those early leaders so our movement will never forgot their courage and sacrifice.

Fighting for people with AIDS is in my DNA and a core value at NMAC. I would never intentionally do anything to erase People Living with HIV or AIDS. When NMAC announced the name change of USCA, we thought we were standing in solidarity with PLHIV. In the past, many leaders have told us that “the word AIDS is stigmatizing.” Per the Denver Principles, NMAC wanted to honor the leadership of PLHIV organizations. How can we reach community if we were using a word that they considered discriminatory? Unfortunately, to some PWAs, our action looked like the opposite of its intention.

Last Friday there was a call of NMAC’s board, staff, and constituent advisory panels to talk about the name. People of color understand the importance of self-determination and the pain of erasure. Our first step was to consult and work with the organizations that were founded and led by people living with HIV and people with AIDS. We reached out to the Positive Women’s Network, Positively Trans, US People Living with HIV Caucus, and the National Working Positive Coalition to ask them for help. We invited them to the 2020 conference to facilitate a community discussion about the Denver Principles, the use of People Living with HIV and People with AIDS, and the need for our movement to support the principles of empowerment and self-determination.

The name of the conference will be changed to the United States Conference on HIV/AIDS (https://uscha.life/). The revised name was suggested by many PWAs online. Nobody wins when our movement is divided, particularly when it’s about the name of a conference. NMAC may have had the best of intentions, but it was definitely not the right time or way to make the change. We had to move quickly to make these changes, including the welcome video and the Spanish Language version of the site. Please let me know if we missed any of the needed changes.

I would be remiss if I did not mention concerns about the tone and tenor of some of the comments on Facebook. While it was mostly an amazing conversation between activists, a few of the posts crossed the line. As an organization that leads with race, our job is to help our movement understand the impact that race has on our work. A few comments were quick to minimize the contributions of women of color, particularly women of color living with HIV. Assumptions were made about their HIV status that were wrong. Assumptions were made about NMAC’s commitment to the Denver Principles and People With AIDS that were also wrong. While they may not have intended for their comments to be viewed through the lens of race, to people of color certain shares were hurtful and all too familiar.

I don’t know why I got to be in the room at the start of the National Association of People with AIDS or when the Denver Principles were finalized. The meetings were a master class in leadership that formed the foundation for my activism. The San Francisco/New York differences in strategy were the stuff of legends. These were men – yes, it was only men back then and mostly white men – who were fighting for their lives. They talked about empowerment because the world had taken away their power. For some of them, it was their first experience as a second-class citizen, and it made them mad. Everything they believed in had vanished and in its place was a death that was worse than anyone could have imagined. Empowerment and self-determination are shared values for PLHIV/AIDS and people of color. While NMAC’s goal was not to erase People with AIDS, I do understand how our actions could be misinterpreted. We made a mistake and changing the name to the United States Conference on HIV/AIDS is our way to apologize and hopefully move forward. Activism works!

Yours in the struggle,
Paul Kawata

Today the administration released their recommendations for the 2021 federal budget that included $716 million for the Ending the HIV Epidemic (EHE) efforts. The Budget includes: $371 million for CDC to reduce new HIV infections; $302 million for Health Resources and Services Administration (HRSA) to deliver HIV care through the Ryan White HIV/AIDS Program and to supply testing, evaluation, prescription of PrEP, and associated medical costs through the Health Centers program; $27 million to the Indian Health Service (IHS) to tackle the epidemic in American Indian and Alaska Native communities; and $16 million for the National Institutes of Health (NIH) for evaluation activities to identify effective interventions to treat and prevent HIV.

Congress does not typically pass a budget in an election year and more than likely we have a Continuing Resolution (CR). NMAC and the many partners with a Washington presence will fight like hell for the new funding, but there are forces beyond HIV that will shape the end result. All is not lost, because often a budget gets passed after the election.

NMAC is a small agency working to have a huge impact. While we are thankful to the administration for the much-needed funding, it is difficult, if not impossible to reconcile our concerns about other parts of the budget and the policies of the administration. Our movement looks to NMAC to lead with race as we fight for health equity and racial justice for the communities hardest hit by HIV. We try to walk this very thin tightrope, but it’s not easy and there are many landmines.

Over the next few months, the federal government’s EHE efforts will grant hundreds of millions of dollars to the 57 target jurisdictions and beyond. This initiative is the direct result of NMAC and many other partners working together to move our work beyond the maintenance phase that had become the new normal. Now our job is to make sure the new funding gets to community because that is where we will end the epidemic.

Our EHE work must be based on our values. NMAC leads with race to end the HIV epidemic. Our values shape the way we fight. They are the foundation for the principles that guide our work and the best practices to end the epidemic. Here are some values that we hope jurisdictions will incorporate into their plans,

• Race matters.
• People Living with HIV/AIDS must be prioritized, especially PLWH/A who have fallen out of care and off their meds.
• Jurisdictional plans must reach communities highly impacted by HIV who were missed in previous efforts.
• Reaching hard to reach communities requires the buy-in and leadership from the people we are trying to reach.
• New hires to implement EHE plans should come from these communities.
• Funding should always follow the data; however, we need better data on the transgender community.
• CDC needs to stop classifying the transgender community with men who have sex with men.
• Community led planning and community evaluation needs to be built into the process.
• Scientifically proven interventions are key to this effort. These interventions must work at a scale to reach the large numbers targeted in the plan.
• Fighting stigma and ending HIV criminalization is core to supporting people living with HIV/AIDS.
• STDs and Hepatitis are key pathways to ending the HIV epidemic.

NMAC is concerned that some jurisdictions will repeat the same programs and miss key communities. While we need to expand programs that are successful, we must also acknowledge that large segments of the communities highly impacted by HIV are not being reached. This is particularly true for gay men of color, black women, the transgender community, and people who use drugs. NMAC respects Dr. Redfield’s call for Disruptive Innovation to end the epidemic. Like him, we believe there needs to be disruptive innovation in order to reach communities that don’t trust the status quo.

Talking To CDC
Two weeks ago, I wrote about the number of staff that are in CDC’s Division of HIV/AIDS Prevention. After talking with CDC, it is important for me to correct the record. The Division of HIV/AIDS Prevention (DHAP) at CDC does not have 800 full time employees:

• DHAP has the authority to hire 554 full time permanent employees at headquarters and 20 in the field for direct assistance.
• However, currently, the Division has approximately 425 full time permanent employees at headquarters and 13 in the field.

CDC let me know that they need a fully resourced headquarters operations to reach the goals of EHE and to perform the following types of work:

• Running a state-of-the-art laboratory.
• Developing, planning, implementing, managing, and evaluating strategies for HIV prevention with state and local public health departments, community-based organizations, and other nongovernmental organizations.
• Monitoring HIV trends and providing the epidemiological investigation and analysis required to support informed prevention efforts and public health action at federal, state, and community levels.
• Conducting HIV outbreak detection and response.
• Conducting research to ensure that proven and innovative tools and interventions are available to prevent HIV.
• Developing, evaluating, producing, and disseminating science-based communications on HIV for the public, providers, and persons at risk of HIV infection to ensure they have the tools needed to protect themselves or their patients from HIV infection.
• Investing in the next generation of public health professionals.
• Improving HIV prevention workforce by increasing the knowledge, skills, technology, and infrastructure needed to implement and sustain science-based, culturally appropriate HIV prevention interventions and strategies.

CDC also said that 9% of the funding will stay at the agency for operations, or around $12.6 million. I appreciate their transparency about funding and hope it will continue. NMAC’s concern was not about the specific number of employees, but rather the building of a government bureaucracy vs. getting the money to the field. NMAC’s goal is to make sure money and programming gets to community because we believe that is where it can make the biggest difference. NMAC and CDC agreed to monthly calls to build better collaboration.

NMAC and CDC agreed to monthly calls to build better collaboration. The first call will be coordinated by NMAC’s Center to End the HIV Epidemic in conjunctions with the 57 jurisdictions prioritized in the EHE plan. This will be an opportunity for them to interact with colleagues from other regions and to ask questions to the CDC.

With the HRSA and CDC funding announcements on the street, NOW is the time to make sure the money gets to where it can make the most difference. If we don’t speak up, decisions will be made that may or may not include community.

NMAC is a small agency working to change the world. We focus on race and its impact on HIV. It’s easy to feel like Don Quixote. Are we chasing after windmills or changing the world? Sometimes they look the same. This may be an impossible dream, but we are still praying for a cure and a vaccine. NMAC believes there is a world without HIV/AIDS, and we are fighting to make that dream real.

Paul Kawata

NMAC is changing the name of the United States Conference on AIDS to the United States Conference on HIV. AIDS is considered stigmatizing language to many people living with HIV and the last thing we want to do is add to their discrimination. This is especially important because we need to reach 500,000 more people living with HIV if we want to end the domestic epidemic. Please watch this important video about the 2020 meeting!

Join us October 10-13 in San Juan, Puerto Rico. The web site for the 2020 USCH is now live! The 2020 theme is Luchando Por Nuestras Vidas (Spanish for Fighting For Our Lives). The theme honors our past and speaks to the future. Unfortunately, luchando por nuestras vida is what the people of Puerto Rico do daily. The theme also speaks to the struggle facing people living with HIV and people on PrEP. We are all connected in the fight for a fair and just world.

The 2020 meeting will serve Puerto Rican and US Virgin Island realness to educate about the challenges of reaching people who speak different languages or have different cultures and values.

The 2020 meeting is in San Juan to 1) provide economic development in a country devastated by Hurricane Maria and the recent earthquakes, 2) give attendees the experience where English is not the primary language, and 3) learn about the rich Puerto Rican and US Virgin Island cultures as a way to value differences.

This image of doors in Old San Juan gets at the message for this meeting. We are all different and beautiful in our own way. Our movement is about the diversity of the doors and how to value and honor differences.

San Juan Convention Center

In order to hold the meeting in San Juan, we had to move to the Puerto Rico Convention Center. It is the only site big enough for USCH. I was just there for a planning meeting with the Puerto Rico Host Committee. They are so excited to share their story of overcoming the challenges of weather, earthquakes, and HIV.

Just in time for USCH, a new entertainment center, El Distrito, will open next to the convention center. El Distrito will have inexpensive dining options, a movie theater, concert hall and an Aloft hotel. Phase I of the complex is slated to open in March.

Registration
Registration is now open. You must register before you can make your hotel reservation if you want to be part of the conference block. Early bird registration fees are $490 for NMAC members and $625 for non members.

Hotel Accommodations
There are no hotels big enough to host USCH in San Juan. As a result, multiple hotel blocks will be available for attendees. While not ideal, it was the only way to bring the meeting to Puerto Rico. You must register for the conference in order to gain access to the block. Rooms will be set aside for scholarship recipients.

Most attendees will stay in one of two hotels. The Sheraton Puerto Rico is the host hotel and is located next to the convention center. Rooms at the Sheraton are $179 per night (plus taxes). We also have a block at the Caribe Hilton. This hotel just reopened; it was destroyed by Hurricane Maria in 2017. Rooms at the Hilton are $199 per night (plus taxes). The Hilton is located on the water a little further from the convention center. Buses will be provided to get people from the Hilton to the convention center. Hotel rooms are limited, so please register early.

For people needing less expensive accommodations, NMAC recommends Airbnb. On that site we found many reasonable places to stay near the convention center. Rooms and whole apartments can be found for $65 per night (plus taxes and fees). Unfortunately, San Juan is hurting for business. Air travel and accommodations are very reasonable. There is a direct flight out of DCA that is less than $300 (r/t). Our goal to bring economic development is real. In the near future, we will provide a list of local vendors for exhibitor and sponsors. Our hope is that everyone uses local companies, The people and businesses in San Juan need our help.

2020 Plenaries

1. HIV in the Latinx Communities. This will be a Spanish language plenary with simultaneous English translation on the screens.
2. Gilead Plenary
3. Federal Update
4. Proof of Concept that Biomedical HIV Prevention Works

The Opening honors Puerto Rico in food, decor, speakers, and language. It will represent the diversity of Puerto Ricans and Latinx who are working to end the HIV epidemic. This will be a Spanish language plenary with English translation on the large screens as a crawl at the bottom of the screen. It will feature Puerto Rican Salsa and Bomba y Plena music

2020 Workshops
There will be a Spanish language track of workshops. In fact, the Call for Abstracts is in both English and Spanish. One of the new tracks is on Geriatric HIV Services. As PLWH age, it is time to relook at the mix of services our movement provides. During the early days, no one could have imagined the need for these services.

Child Care
NMAC will again provide child care. Like geriatric HIV services, child care was not on our radar in the early days. Now so many HIV positive people have children. It is a joy and honor to provide child care for them.

Opening Reception
The folks in PR are having real financial challenges, so it is not reasonable for NMAC to ask them to cover the same expenses as a typical host city. The host committee will be asked to put together the reception’s program that highlights the many cultures of Puerto Rico. NMAC is still trying to figure out how to cover the cost of food.

Guayaberas Shirts
NMAC staff will wear Guayaberas on the first full day of USCH. A guayabera is a traditional Cuban shirt. The origin story tells of a poor countryside seamstress sewing large patch-pockets onto her husband’s shirts for carrying guava from the field. NMAC staff will wear guayaberas to honor the history and legacy of this shirt. We will put the 2020 theme, Luchando Por Nuestras Vida, on the back of the shirt.

Scholarships
The scholarship section will go live on March 3. Last year we had challenges and many constituents were not happy with the results. This year NMAC has committed to double the number of A&B scholarships. However, given the number of applications we receive (more than 1,200), most people will be turned down. Do not depend on a USCH scholarship, Try to find other ways to get to the meeting. The website will share alternative ways to support your travel.

In our efforts to end HIV we must value and honor the cultures of the communities we are trying to reach. HIV impacts very specific communities. These are not general campaigns trying to reach everyone; these are targeted efforts. While the geographic targets are most obvious, within the 57 jurisdictions there are additional targets needed to end the epidemic. Understanding the values and cultures of the communities hardest hit by HIV is key to our success.

See you in October.

As our nation remembers Dr. Martin Luther King, Jr., NMAC stands in solidarity with him when he said, “Of all the forms in inequality, injustice in healthcare is the most shocking and inhumane.” Our fight to end the HIV epidemic is a fight for justice and equality in healthcare for some of the most marginalized people in America.

Now that we have the 2020 federal appropriation and budget line item to end the HIV epidemic, the real work begins. Figuring out how to bring the promise of biomedical HIV prevention to all the communities that are highly impacted by HIV. There is almost $300 million in new funding to figure out that answer. While it is not enough money, it is definitely a good start.

NMAC is very concerned that the money will not get to the communities in greatest need.

Last week the Centers for Disease Control and Prevention announced that they were looking for a new Director for the Division of HIV/AIDS Prevention, in this announcement the CDC noted that this division has nearly 800 employees. While I’ve not done any analysis of the 800 employees, I am very concerned that on its face that number seems excessive, particularly when there is so much need in the field. This is only one division at CDC. There are staff in other CDC divisions that are also supported by HIV funds. Are we building real solutions or just more federal bureaucracy?

If we did a review of the number of HRSA’s Bureau of HIV/AIDS employees, would we see a similar number? What about HUD’s HOPWA program or SAMHSA? Oversight of federal funds is necessary and essential to monitor the programs and expenses. However, the solution to ending the epidemic happens in community. That is where the work force needs to grow and be developed, not Atlanta.

It’s time for transparency. HHS, how many federal employees are supported by federal HIV funds and what is the plan for the new money to end the epidemic? What percentage of those dollars will go to the field? How many more staff will CDC, HRSA, or SAMHSA hire to monitor the new funding? We will never end the epidemic if the money gets stuck in the bureaucracy.

I have similar concerns about some health departments. How many more health department employees will be hired with the new HIV funds? If we are going to reach 500,000 more people living with HIV and get 900,000 more people on PrEP, then vast majority of the funding needs to support the health infrastructure and services in communities that are hardest hit by HIV.

Dr. Redfield, it’s time to do an internal review of CDC’s use of HIV funds before one is mandated by Congress. How many employees does it take to monitor and evaluate federal funding versus the staff needed in community to end the epidemic? Your commitment to disruptive innovation needs to start in Atlanta. Do you need all these employees, or would our efforts be better served by building the infrastructure in the communities working to get PLWH back into care and sexually active adults onto PrEP?

NMAC wants to work hand in hand with the federal government to end the HIV epidemic and that means making sure the new funding gets to where it is needed. Maybe you do need 800 employees in one division at CDC. I’ve not done a review. From the outside it looks excessive, especially when there is so much need in community. Our fight to end the HIV epidemic is a fight for equality and justice in healthcare.