First Monday in October

Traditionally, the first Monday in October is the day that the US Supreme Court convenes following its summer recess. On Tuesday, Oct 8th the court will hear three cases about whether it is legal to fire someone because of their sexual orientation or gender identity. The court will decide if federal laws that ban discrimination based on sex apply to a person’s sexual orientation or gender identity.

Given the current make-up of the court, the outcome is not certain. If we lose, the decision will codify discrimination into the law and run contrary to the court’s ruling on marriage equality. In 2015, the Court ruled that states cannot deny two people the right to get married based upon their sexual orientation because of the Due Process Clause and the Equal Protection Clause. Same-sex couples, thereby, had the same terms and conditions for marriage as mixed-sex couples. States could not discriminate based on the sex of either marriage applicant. If states can’t discriminate, can employers?

People living with HIV are protected by the Americans with Disabilities Act. This law prohibits discrimination against individuals with disabilities including those living with the virus. That means if you are LGBTQ+ living with HIV, employers cannot discriminate against you for having HIV, but in 25 states they can fire you for being gay, lesbian or bisexual. And in 26 states, you can be fired for being of transgender experience and/or gender non-conforming. Approximately half of Americans reside in a state where you can fired for identifying as LGBTQ+.

The majority of people living with HIV are part of the LGBTQ+ community. Stigma and discrimination are things that they face on a daily basis. Often it is impossible to differentiate where the discrimination started. Were you fired because you are living with HIV or because of your sexual orientation and/or gender identity? Will the Americans with Disabilities Act protect people living with HIV if they are fired because they are LGBTQ+ identified? Is that distinction even possible to make? Can you imagine there is an employer who will protect the straight people living with HIV, but fire the LGBTQ+ person living with the virus?

Why does this matter to our efforts to end the HIV epidemic in America? Over the last 35 years, we’ve seen and documented the impact that stigma has on PLHIV. We’ve learned how stigma impacts access and retention in healthcare and adherence to meds. Whether the stigma comes from living with HIV, race, sex, gender identity or sexual orientation, it is usually impossible to tell. Our efforts to end HIV must address the stigma that the Court may codify into law. If you can be fired for identifying as LGBTQ+, that makes us by law second class citizens who are not worthy of the same rights as our straight counterparts.

 

The states colored in grey do not prohibit discrimination based on sexual orientation or gender identity in public or private employment. The ones in purple or pink only offer limited protections for public employees.

How many of those states are part of our efforts to end the HIV epidemic?

 

 

Here is the map for our efforts to end the HIV epidemic. The dots represent the local jurisdictions and the states in blue represent the states that are part of the effort. Of the seven states that are targeted in the federal effort to end HIV, none of them fully prohibits discrimination based on sexual orientation or gender identity in public and private employment.

Regardless of the state or jurisdiction, most people living with HIV feel that discrimination and stigma are challenges that impact their daily lives. Even if the target jurisdictions has laws that protect them (most of them do), they live in the country where the courts will soon decide if they are second class citizens, not worthy of the same protections. This is important because our solutions must fit within the political realities of where people living with HIV live and why we must fight against laws that discriminate against the communities that are highly impacted by HIV.

For decades, Congress has tried to amend the Civil Rights Act to prohibit discrimination based on sexual orientation, sexual identity, sex-based stereotypes, as well as other life facts.  In fact, on May 17, 2019, the House again passed the act, and again, Majority Leader McConnell is refusing to bring it to the Senate floor for a vote.

This is a terrible injustice and we find ourselves depending on a conservative Supreme Court to protect LGBTQ citizens because the Senate has again failed to act.

I’m hopeful that the Supreme Court recognizes the refusal of the Senate to allow a vote on the Equality Act.  Millions of Americans risk getting fired or losing their housing based on who they are and who they love.

On behalf of NMAC’s staff and Board, I strongly urge the Supreme Court to do the right thing – to protect all LGBTQ Americans from employment and housing discrimination.  And I call upon Senate Majority Leader McConnell to stop obstructing justice for these Americans – pass the Equality Act.

Onward. Together.

Yours in the struggle,

Paul Kawata

HOPWA Cuts Endanger HIV Fight

This week’s “Ending the Epidemic” is from Ace Robinson, NMAC’s Director of Strategic Partnerships.

More than meds! More than meds!

It is a mantra that our community keeps preaching if we are serious about ending the HIV epidemic. In 2019, we have had medication that can prevent HIV acquisition after someone is exposed in the form of PEP for 14 years. We also have meds to prevent HIV acquisition before someone is exposed in the form of PrEP for the past seven years. We also know that people living with HIV (PLHIV) who have sustained access and use of treatment can live a longer and healthier life. And those people who can maintain sustained access to care and treatment and achieve viral suppression cannot sexually pass the virus onto another person, aka Undetectable equals Untransmittable (U=U) or Treatment as Prevention (TasP).

Compared to 1987, when we opened our doors at NMAC, we have come light years ahead in our journey to End the Epidemic. But one thing that has become more abundantly clear with each passing day is that we will never achieve our common goal to End HIV with just meds. The stark reality is that HIV clinics still have a steady stream of new patients who are either newly diagnosed and have people who have fallen in and out of healthcare.

Why is that? HIV is more than just a virus. It is an opportunistic disease that is firmly rooted in the communities of greatest need. HIV, even more so than before, finds a way to harm the most vulnerable among us. And there are no people more vulnerable in this country than people who are sleeping on American streets. On any given night, over half a million people sleep in shelters are on the streets. And, according to the Office of Housing & Urban Development (HUD), 40% of those people identify as Black/African-American.

The ripple effect of housing insecurity knows no bounds. The HUD program called HOPWA, or Housing Opportunities for People With AIDS, is a lifeline for PLHIV and their families to access housing. And that’s why there is a nationwide call-to-action alert throughout the field of HIV. President Trump’s budget was released for 2020. The budget added nearly $300M in HIV funding for the new Ending the HIV Epidemic (EtHE) initiative announced in February at the State of the Union address. However, that HIV-specific funding increase for EtHE came at the same time as a proposed $63M decrease in HOPWA funding.

The impact on reducing access to HOPWA would be enormous. It would exceed its impact on just PLHIV. Recently Greg Millett, vice president of amfAR, stated, “We know that people living with HIV who are unstably housed are less likely to be virally suppressed. If you are virally suppressed, you are more likely to die from HIV while also making it possible to transmit the virus on to other people. This is why temporary housing subsidies are allowable under Medicaid and the Ryan White Care Act programs. It is an explicit recognition that housing status and health are interconnected.”

And Millett’s assertion is not just supported by PLHIV, their loved ones, and community-based organizations supporting HIV-impacted populations. A few weeks ago at NMAC’s United States Conference on AIDS (USCA), the director of the Centers for Disease Control and Prevention (CDC), Dr. Robert Redfield proclaimed, “I believe it in every bone in my body. Housing is a medical issue…we are never going to get to the end game unless we recognize that housing is a medical issue.”

HOPWA is core to our ability to reduce the numbers of new HIV infections and HIV-related deaths. That fact is clear. HOPWA funding not only should not be decreased. HOPWA funding must be increased. Under no circumstances can we go backwards.

Public health is not rocket science. We must align what we already know is best to achieve our common goal to End HIV in America and beyond. It can and will be done.

Onward. Together.

Yours in the struggle,
Ace Robinson, MHL, MPH

Thank You

Thank you for another great United States Conference on AIDS. We are a movement, and a family and together we will change the world by ending the domestic HIV epidemic.

I am continually moved by the passion, commitment, and vision of the activists, caregivers, and providers on the frontlines.

This is an epic journey as we fight to end an epidemic that does not yet have a vaccine or cure. Can biomedical HIV prevention take us to the end?

There are people who will try to minimize our contributions because they don’t understand the value and power of community. Their privilege makes them believe they have answers for people that can’t begin to understand.

Here are some of the amazing comments I received on Facebook (I received their permission to reprint):


For leaders who want to extend their education about Biomedical HIV Prevention, we have moved the deadline to apply for scholarships for the 2019 Summit to Friday, September 20th.USCA 2020 will be in San Juan Puerto Rico, Oct. 10-13, 2020. The meeting was pushed to later in the year to avoid the peak of the hurricane season. USCA is going to Puerto Rico to 1) bring much needed economic development to the island after Hurricane Maria, 2) focus on the impact of HIV in the Latinx community, and 3) give attendees the experience of being in a meeting where English is not the only language.I want to extend a final thank you to the NMAC staff, board, and Constituent Advisory Panel members; to members of the DC Host Committee; and to our generous and committed sponsors, including:


And thank you to all 3,000 attendees. We hope it was all you wanted.

Yours in the struggle,

Paul Kawata

 

 

 

 

 

 

Welcome to USCA!

This is going to be the largest United States Conference on AIDS. The weather is very concerning. We want everyone to be safe. The best way to stay informed about the conference is via the smartphone app. Go to Google Play or Apple app stores and search for “2019 USCA.” There are 160 workshops. The non-printed program book is 110 pages long. There are four plenaries and there will be long lines at registration and to get into plenary sessions. We apologize in advance and thank you for understanding. There is lots of interest and concerns about building federal plans to end the domestic HIV epidemic.
Hurricane Dorian

While Washington, DC is not directly impacted, attendees come from regions that might be hit by Hurricane Dorian. Your safety is our first concern. If you can’t make it because of Hurricane Dorian, USCA will refund your registration fee. Be safe and stay in touch. We just want to know you are OK.

If you are hosting a workshop and need to cancel, please inform Alison McKeithen/ amckeithen@nmac.org.

If you have a scholarship and need to cancel, please inform your NMAC contact person.

If you need to change any of your travel or hotel reservations, please do it directly with the airline and/or hotel. Unfortunately, we do not have the capacity to provide this service. Be sure to read and follow all the cancellation policies.
  • USCA Host Hotel: Marriott Marquis, 202-824-9200
  • Courtyard Marriott (DC Convention Center), 202-589-1800
  • Embassy Suites, 202-739-2001
  • Cambria, 202-299-1188

Thank you for understanding and contacting the properties directly.

Disruptive Innovation!!!

An HIV leader recently said, “We are only going to end the HIV epidemic using disruptive innovation.” If we repeat what we’ve always done, we will probably get the same result. Ending the epidemic plans must do things differently in order to reach the people living with HIV who have fallen out of care or are unaware of their HIV status. To use disruptive innovation means to bring the promise of PrEP to communities that were missed in early efforts. Who is this person calling for disruptive innovation? It’s the head of the CDC, Dr. Robert Redfield. He is also the target for a protest at the Opening Plenary.

Dr. Robert Redfield portraitNMAC supports Dr. Redfield’s mandate for disruptive innovation and our community’s right to protest and speak truth to power. We agree that we can’t do things the same way and expect different results. Our concern is that this message is not getting to the field. How can we use disruptive innovation and build comprehensive community consultations into the jurisdictional plans, particularly when a “draft” of the plan is due by the end of the year? NMAC hopes the CDC will listen to the concerns that are raised and that we all work together to achieve Dr. Redfield’s goals of comprehensive community consultation and disruptive innovation!

Protests

As a meeting planner, protests give me acid reflux. As an activist, I understand their power and importance. At NMAC, our response to protests is based on our values. We believe that protests are in the DNA of the HIV movement. It is our shared legacy from the civil rights movement to the women’s movement to the fight for LGBTQ equality to ACT-UP. We stand on the shoulders of generations who stood up and spoke truth to power.

At the same time, we also know that knowledge is power. As oppressed people, we do not always have access to the people and information that can save our communities. Attendees come to USCA to listen and learn. NMAC has a responsibility to also ensure that result.

There is no space for hate speech, bullying, or violence. Given life’s traumas, particularly the trauma of living with HIV, NMAC fights to protect all the communities that are hardest hit by HIV.

The protest at the Opening is about the CDC. Naina Khanna thinks it’s more an organized and permitted speak-out. It was organized by PrEP4All and includes the Positive Women’s Network-USA, Housing Works, Positively Trans/Translatin@Coalition, People Living with HIV Caucus, and ThriveSS.  They are concerned about molecular HIV surveillance, clinical trials, guidelines, and prevention efforts. We’ve agreed in advance that the protest will be limited to 10 minutes so attendees can hear the full presentations from the speakers.

All of the Opening Speakers were informed in advance. To their credit, nobody pulled out. NMAC shared information about the speak-out because we don’t want to surprise anyone, particularly our federal colleagues. USCA does not want to “get” anyone. Our field needs real answers to some of the most complex questions of our times. How do we re-engage and keep the 250,000 people living with HIV who have fallen out of healthcare? How can we reach all the communities that need and could benefit from PrEP? What is the scale needed to reach all these people and the goals of the federal plan? What are the roles that race, gender, gender identity, sexual orientation, depression, and addiction play in HIV prevention, care, and services? There will be a private meeting after the plenary between Dr. Redfield and these organizations. The goal is to have a conversation.

It is a tough time in America. There are lots of reasons to be upset, confused, and mad. Can we put aside our differences and work together to end the HIV epidemic? This will be the biggest test of our leadership.

Using Culture To Highlight Communities

USCA believes that HIV prevention and care efforts must value the culture of the communities the work is trying to reach. All too often services are based on the institution and not the clients. We use culture to connect the humanity of the communities highly impacted by HIV and the provider of services to those communities. Saturday’s plenary is a celebration of people living with HIV and Undetectable equal Untransmittable, including HIV positive singers Branden James and Jade Elektra. Mykki Blanco is hosting a master lecture on how HIV impacts his art. Janssen is sponsoring a special showing of the documentary “5B.” Cliff Morrison and I will host a question and answer period following the film. On Saturday night we get to meet with Noah’s Arc star Rodney Chester and screen “Noah’s Arc: Jumping The Broom.”

Join NMAC and the DC USCA Host Committee for a welcome reception for all USCA attendees on Thursday, September 5th. Enjoy an evening of entertainment, fellowship, and a Special Exhibition Ball featuring Dominique Jackson, Mother Elektra from “Pose!”

Just another typical year at USCA. What would the meeting be if there wasn’t a hurricane or protest or both? Thank you again for joining us. We never take your support for granted and work hard to make USCA the innovative meeting that our movement needs.

Yours in the struggle,

 

 

 

 

Paul Kawata
POZ magazine was gracious to print a special run of the magazine for USCA. I am not on the cover, but they are doing this wrap for the meeting. Thirty years is a long time and I am proud to stand with NMAC in our fight to end the HIV epidemic.

USCA is Next Week!

It’s next week!!! Part of me is excited to see everyone and part of me is worried because it will be the largest United States Conference on AIDS. Interest in the Federal Plan to End the Epidemic has super-sized attendance. This year there are 160 workshops, four plenaries, program book (110 pages long), and lots of information. The best way to stay informed is to download the conference app. Go to Google Play or Apple app stores and search for “2019 USCA .” Thank you for joining us.

2019 USCA Program Book
This year’s USCA program book is 110 pages and will not be printed. You can download it to your computer or smartphone here. The 2019 meeting will focus on the federal plan to end the domestic HIV epidemic. As we work to end the HIV epidemic, NMAC does it in memory of the family,  friends, and lovers we lost. Too many were taken too soon.

USCA Registration Bar Codes E-Mailed on August 30th and September 3rd
Emails go out August 30th and September 3rd with USCA registration bar codes.  Please bring the bar code with your ID to register. Registration will open on Wednesday, September 4th at 4 PM to 7 PM on Meeting Level Four of the Marriott Marquis.Since the meeting is sold out, there will be lines. We ask for your patience and understanding. The USCA Conference Office is located in Marquis Salon 15 on Meeting Level Two.I want to apologize in advance. With this many people, NMAC is bound to make mistakes. Given the diversity of our movement, making one constituency happy sometimes makes another group mad. In this no-win situation, someone will get upset. If there is a problem, please speak to me at pkawata@nmac.org. Ultimately, I am responsible. Since this is my 30th year at NMAC, I’ve come to understand the importance of listening to constituents. If any group wants to meet, I will make time on my schedule.

From the beginning, NMAC has said that ending the epidemic will be one of the biggest tests of our leadership. Can we see beyond the difficult politics to find common ground? We are trying to accomplish something that has never been done, to end an epidemic without a cure or vaccine. If that wasn’t difficult enough, we are doing it at a time when the country is deeply divided.

Make no mistake about it, the HIV community is angry. Daily, people living with HIV face stigma, discrimination, and even violence. Two hundred and fifty thousand PLWH have fallen out of care. One hundred and fifty thousand are unaware of their HIV status. Most are people of color who live in a world that minimizes their value because of the color of their skin. These disparities must be addressed if we are to reach the communities that have fallen out of care or who could benefit from PrEP.

Over 70% of the jurisdictions do not expect to have their plans done by December 2019.
NMAC is very concerned that some 57 targeted jurisdictions are not ready for the task in front of them. NMAC’s recent needs assessment confirmed our fears.

 

 

 

 

 

Gathering of the 57 Jurisdictions
The federal government has targeted 57 jurisdictions to build plans and implement programs to end the domestic epidemic. NMAC invited administrators from these regions to attend USCA and 43 will be joining us. Our goal is to give them an experience of USCA and the communities that are hardest hit by HIV. While many have previously attend USCA, this year is different because the federal government has set a date to end the epidemic and we hope they will come with answers to the many questions about the process.

2019 USCA Exhibit Hall
Below is a map for half of the exhibit hall. Located next to registration, the exhibit hall takes up both the Liberty and Independence Ballrooms. Dessert will be served in the exhibit hall on Thursday, Friday, and Saturday after the plenary sessions.

Flu Shots
Walgreens will give out free flu shots at USCA during exhibit hours. You can find them in the exhibit hall in booths 615 & 616.2019 USCA T-Shirts
NMAC will give away t-shirts again this year. Since everyone does not want or need a t-shirt, we only printed 1,000. T-shirts will be available at the NMAC exhibit booth. Please wear the T-shirt to the Saturday plenary where the conference will celebrate People Living with HIV and U=U.Sessions with Spanish Translation
USCA offers a full track of workshops with Spanish translation. Pages 104-107 of the program book have more information.
Noah’s Arc
You may have heard the rumors about a potential reboot of “Noah’s Arc.”  While we don’t have any inside information, USCA invited Rodney Chester, who played Alex Kirby, to the meeting.Rodney will show the Noah’s Arc movie, “Jump the Broom.”  He will also host a Q&A with audience members. Join him on Saturday in Georgetown room, Meeting Level 1. USCA uses culture to educate our movement about the communities that are hardest hit by HIV. 

Grief Counselors
We are a movement that suffers from discrimination, prejudice, and violence. Many of us are isolated and depressed. Unfortunately, there are things that happen at USCA that can trigger those issues. Listening to plenary talks, watching the documentary 5B, learning of colleagues who passed. The meeting has many potential triggers and we want to help. USCA is working with the local host committee to have counselors on site. We all need help sometimes and there is nothing wrong with asking for support. If you think this might be helpful, please ask conference staff to make the connection. Counselors will be on site and available to talk.

Thank you for joining us for this historic meeting. Hopefully, USCA builds real pathways for collaboration and cooperation. NMAC is ready to work. We know it will only happen when we work together.

Yours in the struggle,
Paul Kawata
30 Years of Service

USCA is Sold Out!

The 2019 United States Conference on AIDS is sold out! The good news is that more people than ever want to learn about the federal plan to end the domestic HIV epidemic. Thank you for the overwhelming response. We understand this is an important year. I also know this is disappointing for some and I apologize for any inconvenience it causes. The online registration portal will stay open until August 23rd, then it will close. We will not accept any onsite registrations.

Our primary concern has to be for the safety of attendees. You can only fit so many people into the hotel before it becomes dangerous. For those attending, there will be lines. We will do our best to make them move quickly and we appreciate your understanding.

Consider attending the Biomedical HIV Prevention Summit. The meeting is December 3-4 in Houston, Texas.  The deadline to apply for scholarships is September 16th.

Child Care @ USCA
So many people living with HIV now have children. That is amazing and such a blessing. USCA offers child care for attendees from Playtime Sitters. This company is owed by Khadijah, who is part of the USCA Faith Coalition. Make your reservation in advance with Alison McKeithen. I remember a time when we focused solely on the medical needs of people living with HIV, so to have child care makes me so happy. I don’t think we could have imagined this reality in the early days of the epidemic.

Don’t Call Us “Other”
To plenary and workshop leaders, thank you for volunteering your time, talent and expertise. USCA is first and foremost a training opportunity. This year there will be 160 workshop, four plenaries, and long lines. When giving your presentation, please do not use “other” when speaking about American Indians/Alaska Natives, Asians, or Pacific Islanders/Native Hawaiians. While I understand our sample size may be too small to have good data, it’s better to note that fact than to label us as “other” in order to balance your percentages.

Please do not combine the transgender community with gay men. Once again, I understand if you don’t have that information because the data was not collected that way. It is better to note that fact in your presentation. This is not about being politically correct; it is about having real data to supports jurisdictional plans. How can we tell if we are ending HIV in the transgender community if we don’t have good data?

USCA Conference Planning Team
The Conference Operations Office is located in Marquis Salon 15 on Meeting Level 2.

TARA BARNES-DARBY
Director of Conferences

Tara is your contact for all conference-related information and has overall responsibility for USCA. Email: tbarnes@nmac.org Phone: 202.870.0460

ALISON J. MCKEITHEN
Conferences Manager

Alison is your contact for all conference related information, particularly questions about sessions, faculty, and special events. She is also your contact for all things workshop, poster, institutes, master series, and affinity sessions related. Email: amckeithen@nmac.org Phone: 202.930.2567

SHANTA’ GRAY
Conferences and Registration Coordinator

Shanta‘ is your contact for conference registration and scholarship concerns. Shanta‘ will be stationed at the “On-Site Solutions” booth at conference registration. Email: sgray@nmac.org Phone: 202.302.9720

GABRIELLA SPENCER
Conferences Program Associate

Gabriella is your contact for the Conferences Operations Office. She is able to receive and disseminate communications and assist in troubleshooting issues onsite. Email: gspencer@nmac.org Phone 202.738.0935

TERRELL PARKER
Associate Program Manager

Terrell is your contact for CAPs, programmatic questions, and overall troubleshooting. Email: tparker@nmac.org Phone: 202.977.5598

SAFISHA MANCE-THOMAS
Exhibits Coordinator is your contact for the conference exhibit hall. She can be reached through the Exhibitor Registration booth in the booth on the Meeting Level 4 of the Marriott Marquis. Email: smance@nmac.org Phone: Phone: 202.492.8278

Thank You 2019 Sponsors

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Workshops & Pathways
This year’s conference will offer 160 workshops via Pathways and Tracks. The difference between a track and a pathway are the number of workshops.  Pathways are limited to four, while tracks are significantly larger. Tracks also come from abstracts, while a pathway is curated by the host agency. USCA works hard to bring state of the art learning from agencies and presenters who are leaders in their field. Our workshops differ from scientific conferences because we ask the presentations use community learning styles and be interactive and open to questions. Attendees come to USCA with very different levels of understand.

2019 Pathways

 

 

 

 

 

 

 

 

 

 

2019 Tracks

 

 

 

 

 

 

 

 

 

 

 

 

Morning Worship Service
The Balm in Gilead will host morning worship services starting on Thursday at 7:00. AM. The location is the Scarlet Oak Room on the lobby mezzanine.

For NMAC, ending the domestic HIV epidemic is our mission slayer, our raison d’etre. We will lead with race to ensure that plans to end the epidemic work in all the communities highly impacted by HIV. This only works when government and community collaborate. There is much that divides us and sometimes I’m surprised we’ve made it this far. Biomedical HIV prevention has given us real pathways, but we need to reach communities that are stigmatized, marginalized, and disenfranchised. People living with HIV are core to the solution and must be prioritized, particularly the 400,000 PLWH who have fallen out of care or are unaware of their HIV status.

Yours in the struggle

 

 

 

 

 

Paul Kawata*
*POZ Magazine was gracious to print a special run of the magazine for USCA. I am not on the cover, but they are doing this wrap for the meeting. 30 years is a long time and I am proud to stand with NMAC in our fight to end the HIV epidemic.

 

 

Understanding The United States Conference on AIDS

Are you excited for this year’s United States Conference on AIDS? To help you navigate the meeting, here is some of the back story. This year’s meeting will focus on the federal plan to end the domestic HIV epidemic. On October 1,, 2019, 57 jurisdictions will start to build plans to end the HIV epidemic by 2030. The promise of biomedical HIV prevention gives real pathways to significantly reduce the number of new cases. The goal is to have fewer than 3,000 cases per year by 2030.

For the newbies to USCA, here’s some of the back story. The meeting is the largest community-based HIV conference in America. Around 3,000 folks will join us this year. Thirty-five percent of the attendees are people living with HIV. Sixty-five percent are people of color. USCA works hard to reflect the HIV epidemic in all of its diversity.

For some people, their first time at USCA can be a little scary and overwhelming. This year there are 160 workshops, four plenaries, and long lines at registration. To help you navigate, join us for the USCA Orientation Webinar on Wednesday, August 14th at 3 PM (Eastern).  Register now.

Attendees are both providers and the people jurisdictional plans need to reach. In the larger world, many of our attendees are stigmatized, marginalized, and made to feel less than. At USCA they are prioritized, heard, and made to feel like the color of their skin does not matter. There will be protests. Protests are in the DNA of our movement and something that NMAC supports. Learning to speak truth to power without violence is an important lesson for people who live on the margins. From the civil rights movement to the women’s movement to the LGBTQ movement to ACT-UP, this is how we are heard.

The Opening Plenary will feature interviews with the federal leaders who wrote the plan. It will be NMAC’s version of the Sunday Morning talk shows with Dr. Redfield (CDC), Dr. Fauci (NIAID), Rear Admiral Weahkee (IHS) and Dr. Cheever (HRSA). Saturday’s plenary is a celebration of People Living with HIV & U=U. Sunday’s closing plenary will be about PrEP and how to reach the communities that have not seen the promise of this science.

Training Opportunity
First and foremost, USCA is a training opportunity with 160 workshops. The conference uses a smartphone app to keep everyone informed. Go to  Google Play or Apple app stores to download the app. CDC and HRSA have pathways of workshops:

  • Centers for Disease Control and PreventionPrEP and SSP Strategies to End HIV: Successes and Challenges
  • Supporting Linkages, Retention and Rapid Antiretroviral Therapy (ART)
  • How do we DIAGNOSE HIV Infections as soon as possible?
  • Partnering for Public Health Response to End the HIV Epidemic
  • Building on HRSA Programs’ Infrastructure Supporting Ending the HIV Epidemic
  • Community Engagement and Involvement of People with HIV
  • Innovation through Implementation Science
  • HRSA Ending the HIV Epidemic Listening SessionI.R.S.A. Resources and Services Administration
  • Sesion para escuchar: Como acabar con la epidemia de VIH

Other pathways include: Faith, Fast Track cities, Health Care Providers, Hepatitis, Health Care Access, the South, STDs, Structural Interventions, Treatment/CFAR, and U=U. The 2019 Tracks include: Biomedical HIV Prevention, Ending the Epidemic, Gay Men, Leadership, Opioid Epidemic, PrEP for CBOs, People Living with HIV, Public Policy, Transgender and Gender Non-Conforming, Trauma-Informed Care, Women and Youth.

There is NO printed program book. Past evaluations said printed program books were not environmentally responsible and usually get thrown away. The best way to stay informed about USCA is to download the conference app. Go to Google Play or Apple app stores to download it. A PDF of the program book that you can download will also be available on the USCA website.

Building A Movement
Ending the epidemic in America requires a movement of people working collaboratively towards a common goal. USCA builds that movement by bringing together the diverse communities highly impacted by HIV to talk, train, and argue. What makes the meeting both dynamic and challenging is our diversity as marginalized people in America.

Unfortunately, HIV disproportionately impacts people who live outside of the mainstream. To end the epidemic, we must reach communities that don’t trust the government or the systems that are put in place to help. Can you blame them? Daily we hear that we are less than, not valued, or disposable. The people who make it to USCA are empowered, but they work with, support, and speak on behalf of too many who are disenfranchised.

That is the great paradox. To end the epidemic, we need people living with HIV to stay in healthcare and be adherent to their meds. PLWH daily face discrimination, stigmatization, and criminalization from the systems that now needs them to end the epidemic. If we do not celebrate people living with HIV and their capacity to be undetectable, how will our efforts succeed? It is difficult to celebrate people you do not know.

Some believe we just need to link people into healthcare and get them on meds. If only it were that easy. While that might work in the mainstream, it definitely does not speak to people who suffer from the trauma of racism, homophobia, sexism, transphobia, and addiction. When NMAC says this will be one of the biggest tests of our leadership, we mean it. Not only do we have to work across systems, but we also have to work with people who have different values, beliefs, and ideals.

Family Reunion
At its foundation, USCA is a family reunion. We celebrated that fact two years ago and it is still true today. The world can be a lonely and harsh place for people who are different. USCA is a place that celebrates what society shuns.

We celebrate the diversity of our family. If you cannot stand with that commitment, then please don’t attend the meeting. Like all family reunions, there are disagreements. NMAC believes our disagreements makes us stronger, but sometimes it moves beyond disagreements to bullying. That’s where we draw the line. Bullying, harassment, and violence are never OK. As marginalized people, we live in that reality every day. USCA is a safe space where differences are honored and privilege is minimized.

In other words, USCA is not your typical HIV meeting, but HIV is not your typical disease. On October 1st our nation will start planning to end the HIV epidemic in America. Plans are due by the end of the year. Who sits at the table and the agencies that implement the plans will make the difference between success or failure. It’s up to us to fight for our communities. Thank you for joining us this very important year.

Yours in the struggle,

 

 

 

 

 

Paul Kawata 
30 Years of Service

 

Ending the Epidemics in Their Memory

This Oct 1st our country will start to build plans to end the HIV epidemic. We are about to write history. This is something that most of us only dreamed about happening. As we work to end the HIV epidemic, I do it in the memory of Michael Hirsch.

(Michael is in the middle next to David Summers, Sal Licata, and Michael Callen. They are all gone).

When I moved to Washington in 1985, I had no idea which way was up. Michael Hirsch was the first person to take me under his wing. He was the quintessential New York activist, and the first executive director of the New York PWA Coalition and The Body Positive. Michael could drive me crazy, make me angrier than I thought possible, and make me laugh until I cried.

He would attend board meetings while still infusing. He wanted to remind the world that HIV was about real people with real problems. Because of Michael, I was accepted into the PWA community. He insisted I attend early organizing meetings that would later become the National Association of People with AIDS (NAPWA).

Michael would write these long diatribes about life, the movement, his frustrations and joy. They were intimate letters between someone who was dying and someone who would remember. He would close each letter with “Yours in the struggle.”

Then I got the call. If you did AIDS work in the ‘80s or early ‘90s, it’s the call to come to the hospital/hospice/home quickly because your friend is about to pass. The call for Michael happened while I was in Washington. I hopped the shuttle to New York and prayed I would make it on time. The taxi ride from LaGuardia to Saint Vincent’s seemed to last forever.

When I rushed into the hospital, Michael’s mother and sister were sobbing. My heart sank. Was I too late? Just then Rona Affoumado found me, “Oh God, you made it. The family just decided to pull the plug.” I wasn’t too late Rona escorted me into Michael’s room. It was all pumps and whistles from the many machines keeping him alive. It had that funny smell, the smell of death. Michael was unconscious. The morphine stopped the pain so he could sleep. When they turned off the machines, there was an eerie silence. I held Michael’s hand and told him how much I loved him. Just then his eyes opened, and a single tear rolled down his cheek and he was gone.

The nurse later said it was a reflex. To me it was a sign: Michael saying goodbye and to always remember. I close all of my emails with “Yours in the struggle” to honor his life and the lives of so many we’ve lost. The theme for the 2019 United States Conference on AIDS is “Ending The Epidemic in Their Memory.” I remember Michael Hirsch.

Yours in the struggle,

Paul Kawata
30 Years of Service

2019 USCA Scholarships in Review

This year the United States Conference on AIDS received 1,112 scholarship requests and awarded 216 scholarships. Unfortunately, the vast majority of people were turned down. People are upset, and I am sorry. When you look at the demographics of who got scholarships, USCA prioritized People Living with HIV and People of Color, the communities hardest hit by HIV. Fifty scholarships were set aside for people Over 50 Living with HIV, 30 for youth, 15 for People on PrEP, 18 for Social Media Fellows and the balance in the general pool. The process was set up through Events Rebels. Our reviewers go online and blindly review the applications without seeing the applicants’ names. Reviewers were people who work on the frontlines of the epidemic and are part of the Constituent Advisory Panels (CAPs).

Here are the demographics for the awardees:

HIV Status

  • Positive – 57%
  • Negative – 34%
  • On PrEP – 5%
  • Undeclared/Unknown/No Answer – 6%
Ethnicity
  • AA/Black – 54%
  • Latinx – 21%
  • Caucasian/White – 14%
  • Asian – 4%
  • AIAN and NHPI – 5%
  • Not Disclosed/No Answer – 2%
Gender/Gender Identity
  • Male – 53%
  • Female -33%
  • MTF or Trans Woman – 8%
  • FTM or Trans Man – 1%
  • Gender Queer/Androgynous – 2%
  • No Answer – 2%
In addition to the NMAC scholarships, partners gave out an additional 200 scholarships from the following agencies:
  • Indian Health Service
  • Latino Commission on AIDS
  • National Black Gay Men’s Advocacy Coalition
  • Positive Women’s Network-USA
  • Transgender Law Center

In addition to these partners, the Black Women’s Health Imperative is bringing 200 African American women to USCA. We are very thankful to our colleagues for their support. NMAC believes it is important to have diverse organizations selecting scholarship recipients from their constituents. The goal is for USCA to reflect the demographics of the epidemic.

NMAC also heard concerns about the same people getting scholarships. We did a look back and saw around 30% of the scholarships went to people who received one previously. That means 70% went to new leaders. Most of the repeats happened for the Youth Scholars. This is strategic because the agency believes it takes more than one year to build leaders. The agency also gives a limited number of repeat scholarships in our Over 50 Living with HIV initiative. We try to bring previous recipients back to help run the program onsite and to act as mentors. Some people do get scholarships every year, but they aren’t necessarily from NMAC. Thankfully, we have partners and donors who provide scholarships independent of NMAC. Many attendees are sponsored by community-based organizations and/or the health department.

I know people were disappointed. I was disappointed that we could not fund more scholarships. In our efforts to support new leaders, sometimes scholarships are given to newer activists. Getting a scholarship is not a reflection of your value as an activist. Many long-term leaders in our movement did not get a scholarship. Given the concerns, NMAC will:

  • Do a complete review of the scholarship process,
  • Host an online evaluation to gather more community input,
  • Open Constituent Advisory Panels to new members and new scholarship reviewers
This year our partners and the conference will award over 600 scholarships, or about 20% of the attendees. We want to thank our sponsors for supporting scholarships: Gilead, ViiV, Jansen, Merck, Broadway Cares/Equity Fights AIDS, Indian Health Service, and the National Institutes of Allergies and Infectious Diseases. None of the sponsors were involved with any of the decisions. Scholarship decisions are the sole responsibility of our partners or NMAC. We take our responsibility of awarding scholarships very seriously. Unfortunately, there is much more need than resources. If you need to talk, you are welcome to email or call (202-277-2777) me.

Yours in the struggle,

Paul Kawata
30 Years of Service

Now That The CDC Application is Done!

Congrats to the jurisdictions that successfully submitted their CDC PS19-1906 application. Here are some of NMAC’s thoughts about the next steps for leaders working on the plan: Don’t wait. The turn-around time for your jurisdictional plan to end the HIV epidemic is short and waiting will make the job harder. Prior to receiving the final funding award, NMAC believes it is important to:
  • Inform your governor, mayor, and other elected officials about your planning efforts to end the HIV epidemic in their jurisdiction,
  • Work to identify planning body members, and
  • Finalize your jurisdiction’s epi profile.
Elected Officials
Since plans are focused in particular jurisdictions, it will be important to inform, educate and seek support from city, county, state and federal elected officials. Their support is critical as plans are implemented. Not only do they help carry the message, federal elected officials vote on the 2021 Federal Budget that will hopefully include implementation funding for our important work to end an epidemic. The goal is to reduce new HIV cases by 75% in five years and we need elected officials on our side.House Appropriations Subcommittee Language
When putting together new planning bodies or using existing councils, health departments should remember the House’s subcommittee on appropriations language (see below):

Community-Based Organizations. —The Committee recognizes that community-based organizations play a crucial role because of their capacity to reach communities highly impacted by HIV. The Committee directs CDC to ensure that planning councils reflect their local epidemic by including community-based organizations and people living with HIV. The Committee further requests CDC’s progress of engaging such communities be included in the fiscal year 2021 Congressional Budget Justification.

Planning Bodies Should Reflect Their Local HIV Epidemic
While not final, the House requested that the planning bodies reflect their local HIV epidemic. They also requested a progress report about the role of community-based organizations in the CDC’s 2021 Congressional Budget Justification. This means Congress will monitor how CDC engages community. NMAC supports this action and will work with planning councils to make sure they meet Congress’s expectations. NMAC asks CDC to track demographic information on planning council members by HIV status, PrEP status, race, gender, gender identity, zip code, and sexual orientation. For most health departments these stats are a given; however, it’s not true for every jurisdiction. Zip codes are important because they often divide regions along lines of economics, race, sexual orientation, and health services.  HIV programs should be targeted to the zip codes with the largest number of PLWH. People who live in wealthier zip codes tend to have easier access to services that are missing in poorer communities. These are minimal standards and planning bodies should expand what demographics are to be shared based on their jurisdiction’s data sets and needs.

Policies and Procedures for Operation
When putting together your planning bodies, it will be important to determine policies and procedures for operation in advance of the selection process. To some this might seem insignificant, but there are people of color leaders who believe systems like Robert’s Rules of Order are a racist construct meant to minimize our voice. It is important that planning councils’ policies and procedures empower the communities the jurisdictional plans need to reach. NMAC believes race and our ability to reach people of color is core to the solution. If we include systems that are experienced as oppressive, then how can community believe in the solution.

Jurisdiction’s Epi Profile
Your jurisdiction’s epidemiological (epi) profile should be the foundation for program and funding decisions. As a result, everyone should be informed and educated about this critical information. Community needs access to HIV statics that include the race, gender, gender identity, sexual orientation, and zip codes for the people living with HIV and people on PrEP in their jurisdictions. Most jurisdictions have this data but NMAC is concerned the information is not available in all jurisdictions. This is the minimum data to be shared. Planning councils may ask for more information like community viral load, and STDs and Hepatitis overlays. NMAC believes that work to end the HIV epidemic should also include work to end STDs and Hepatitis.

Treatment Education for Planning Body Members
Planning council members must be knowledgeable about all the components of their jurisdiction’s plan, particularly information about U=U, PrEP and their epidemiological profiles. Often data is too technical and not understood by people without graduate degrees. Our movement has lost much of its community treatment education infrastructure. NMAC believes treatment education is core to supporting planning council members, PLWH, and people on PrEP to understand the value of retention in healthcare and adherence to meds. When people know better, they do better. NMAC calls on CDC and HRSA to support Planning Councils requests for treatment education services as tools for retention and adherence.

Organizing PLWH & People on PrEP
It will also be important to support organizing by People living with HIV and People on PrEP. Peer to peer education and support is also key to adherence and retention. I don’t think the federal government wants to have the sex talk with PLWH or people on PrEP. This is better left to support groups organized for peer to peer learning and to help communities meet the goals of this initiative. Ways to organize should be left to local planning councils to determine. Some will organize along lines of race, gender, gender identity, or zip code, while others want to be part of groups that include everyone. There is not one right way to organize and communities should make their own priorities. These organized coalitions should be prioritized for the treatment education efforts noted above.

There is lots to consider. This is the first of many e-newsletters that will suggest options for health departments to consider when putting together their jurisdictional plans.  We invite everyone to send additional recommendations to Linda H. Scruggs, the director of NMAC’s Training Center to End the Epidemic. Successful planning requires that all communities highly impacted by HIV have a real seat at the table. Far too often only lip service is provided to this important need. If you are unclear about how to proceed, ask for help. Nobody has all the answers, but it’s better when we work collaboratively. NMAC is committed to your success and we are here to serve.

Yours in the struggle,

Paul Kawata
30 Years of Service