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NMAC Mourns the Loss of Congressman Elijah Cummings
NMAC joins with all Americans who fight for racial and health justice, in mourning the passing of Congressman Elijah Cummings.
“Since 1996, Congressman Cummings not only proudly represented his constituents in Maryland’s 7th Congressional district, he represented all Americans who are marginalized because of their race, sexual orientation, sexual identity, HIV status, and injustices associated with minority health disparities,” said Joe Huang-Racalto, Director of Government Relations and Public Policy for NMAC. “Congressman Cummings was also an unbending voice for civil rights. As Chairman of the Congressional Black Caucus in the 108th Congress, Congressman Cummings helped lead the fight against two federal marriage amendments, which if passed, would have laid the foundation for amending the U.S. Constitution to prohibit same-sex marriages. While we mourn his loss, his legacy of bringing to the forefront and fighting the injustices facing minorities will live on. On behalf of NMAC’s staff, board, and our constituents, we send our deepest thoughts of love and grace to his wife, Maya and their three children.”
Can We End The HIV Epidemic in Women, Particularly Black Women?
For people who have a hard time remembering to take a daily pill, will an injection or implant be a game-changer for them? Understanding implants and “choice” will be a very difficult question for our community. Will they be accepted as an option in impacted communities and will they be accessible if they are acceptable? Can the government force anyone to get implants that protect them against HIV? Since our efforts to end the domestic HIV epidemic requires plans to reach hundreds of thousands of people, do these innovations make our work easier or harder? Without comprehensive HIV treatment education programs, NMAC is concerned that some communities will be left behind as the treatment paradigm is shifting. Plans to end the HIV epidemic must include HIV treatment education for all communities highly impacted by HIV.
2019 Summit Scholarship Recipients
This year the Biomedical HIV Prevention Summit will award 280 scholarships from over 800 applications. NMAC will spend $313,000 on scholarships for the 2019 Summit. The average award is $1,117. Over 200 successful applicants will be receiving an NMAC scholarship for the first time.
Demographics of Scholarship Recipients
Gender/Gender Identity Age Race/Ethnicity HIV Status
Androgynous | 1% | 22-24 | 3% | African American | 46% | HIV Negative | 44% |
Female | 30% | 25-34 | 47% | American Indian/ Alaska Native | 4% | On PrEP | 17% |
FTM/Transmen | 5% | 35-44 | 25% | Asian | 3% | HIV Positive | 31% |
MTF/Transwomen | 17% | 45-54 | 15% | Caucasian | 20% | Undeclared | 5% |
Gender Non-confirming |
4% | 55-54 | 9% | Latinx | 25% | Unknown | 1% |
Gender Queer | 4% | 65+ | 1% | Prefer not to disclose |
2% | Blank | 2% |
Male | 36% | ||||||
Prefer not to disclose |
3% |
NMAC wants to thank Gilead for their support of the Summit. Additional funding was provided by ViiV, Janssen, Avita, Walgreen’s, Curant Health and InTheMeantime Men. We thank all of our donors; however, it is important to note that they have no input in scholarship decisions or the conference program.
Additional Scholarship From Independent Agencies
100 more scholarships will be given out (25 per agency) by 1) Abounding Prosperity Inc., 2), FLAS Inc. 3), Latinos Salud, and 4). Sister Love. Please contact them directly to get more information about their scholarship process. NMAC thanks them for adding to the scholarship pool. Their process and decision making are independent of NMAC and the Summit.
Scholarship applications were reviewed by members of NMAC’s Constituent Advisory Panels (CAPs) and NMAC staff. One of the major challenges this year was incomplete applications. We encourage everyone to answer each question fully so they can receive the highest possible score. We also have webinars on our website that offer helpful information about the scholarship process. Please know that we value you and your leadership and contributions to our community. Unfortunately, we cannot support all of the requests we receive.
See you in Houston!
Yours in the struggle,
Paul Kawata
30 Years of Service
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.
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.
Yours in the struggle,
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.
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):
And thank you to all 3,000 attendees. We hope it was all you wanted.
Yours in the struggle,
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.
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.
NMAC 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
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.
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.
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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
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.
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.
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.
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:
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
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.
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