2020 USCA Oct 10-13, 2020 San Juan, Puerto Rico

The United States Conference on AIDS is proud to announce our 2020 meeting will be in San Juan, Puerto Rico on October 10-13. NMAC is going to San Juan to bring A) much needed economic development, B) highlight HIV in the Latinx community, and C) to experience a city where English is the second language.

 

On September 20, 2017 Hurricane Maria struck Puerto Rico and devastated the island. Eighteen months later, they still need economic development. According to the San Juan Convention Bureau, “USCA will provide jobs for over 1,000 people during the week of the conference.” Tourism is the lifeblood for the region; however, people have not returned in the same numbers. Like NMAC did after Katerina, USCA is going to the island to support our friends and the economic development of the region. We expect everyone from New Orleans to show-up and show-out for their colleagues in San Juan.

Prior to selecting San Juan, NMAC confirmed with HRSA and CDC that their grantees could attend. The agency appreciates their support. Since San Juan is one of the prioritized jurisdictions, it’s a great opportunity to learn about their plans to end the epidemic. The meeting was delayed until October 10-13 to be away from the peak of hurricane season.  New 2020 Program Partners include the Latino Commission on AIDS and the Prevention Access Campaign.

According to the CDC, Latinx gay men passed white gay men with the second-highest number of new HIV diagnosis in 2016. 7,689 (29%) Latinx gay were diagnosed with HIV in 2016 compared to 7,392 (28%) for White gay men and 10,226 (38%) for African American gay men. This report did not list the numbers of gay American Indians, Alaska Natives, or Pacific Islanders. The number of people living with HIV in the transgender community are included with gay men; as a result, there is not a clear picture of the impact of HIV on the Latinx transgender community.

2020 USCA will focus on language and culture and their impact on retention in healthcare and adherence of meds. USCA attendees will be part of a community where English is the second language. The conference will offer some workshops only in Spanish. Like some clients, attendees can experience what it means to have limited understanding of the discussions.

NMAC wants to thank the activists and community-based organizations on the island. We did not want to add to their burden, so the decision to hold USCA in Puerto Rico was ultimately theirs to affirm. Overwhelmingly, they voted “yes” to bring USCA to San Juan, not only for economic development, but also to raise the visibility of HIV in this priority jurisdiction.

 

The Conference will be held at the Puerto Rico Convention Center. While USCA does not typically use convention centers, it was the only space that could hold the meeting. The main conference hotel is the Sheraton Puerto Rico. In addition, we have rooms at the Caribe Hilton. Many people have fond memories of this hotel. Unfortunately, it was destroyed in the hurricane. The Caribe Hilton just reopened on May 15.

For some, getting to Puerto Rico will be a big sacrifice. Thanks to our constituents from Hawaii, Guam, and the Pacific Islands. NMAC appreciates your continued commitment and support. Puerto Rico is part of the United States, but some jurisdictions think it’s foreign travel. Please feel free to ask for an invite letter to justify your attendance. USCA has the opportunity to bring economic development to a community in need, learn about the HIV epidemic in the Latinx community, and experience a city where English is the second language. Gracias.

Yours in the struggle,

 

 

 

 

 

Paul Kawata
30 Years of Service
This photo of me and Rafael Acosta was taken at a reception that Jose Toro and the Fundacion Sida de Puerto Rico hosted for NMAC in Old San Juan.

Ending the Epidemics in Their Memory

Our movement is about to come full circle as we build plans to end the HIV epidemic and hopefully the syndemics of STDs and hepatitis. We stand on the shoulders of heroes who fought an unknown virus. The lessons learned during the plague years formed the foundation and strength of our work. To memorialize their courage and sacrifice, the theme for the 2019 United States Conference on AIDS is Ending the Epidemics in Their Memory.

It is impossible to fully describe the early years. Those unspeakable times became part of the DNA in our movement. We learned to fight back because nobody would take care of our friends. Food was regularly left outside of hospital rooms, funeral homes refused to cremate our partners, and the list goes on. These harsh lessons taught us that the fight against the virus was also a fight for civil rights, equality and justice.

As we build plans to end the epidemic, USCA honors and remembers the leaders who made this moment possible. Leaders like Craig Harris, one of NMAC’s founders and our first board chair.  In 1986 Craig jumped onto the stage of the American Public Health Associations’ first plenary on AIDS because all of the speakers were white. He grabbed the microphone and said, “I will be heard.” NMAC, like many HIV organizations, started as a protest to the unfair and unequal treatment of communities highly impacted by HIV. We lost Craig early in the epidemic, but his vision for racial justice is still core to NMAC and hopefully all of our work to end the epidemic.

Who was your Craig Harris? Who was the person that exemplified strength and courage in the face of great adversity? USCA wants to honor their names. As we build plans to end the epidemic, it is important to remember that our work is rooted in struggle, discrimination, prejudice, and hate. This is an epidemic that mostly impacts people on the margins of the mainstream. Our work was never about soccer moms, but we are thankful for their support.

This year’s USCA will have two walls with the names of leaders we lost in the struggle; leaders who were the “sparks” that ignited your agency or community. Our online only program book will tell their stories. Unfortunately, there are too many heroes and too many stories that are forgotten. USCA is collecting names, photos and stories of heroes in the struggle. Please email this information to communications@nmac.org by June 21 to be included on the wall and in the online program book.

Our movement is extremely diverse, but sometimes our history gets written from limited perspectives. Please help NMAC document the diversity of stories and leaders in our movement. We hope to hear from middle and rural America, people of color, the transgender community, the South, women, youth, elders, drug users, and LGBTQ communities because they are all key to our efforts to end the HIV epidemic. We are writing history. Let’s remember the courage and strength of the heroes who are gone too soon. Their lives form the foundation for our work and commitment to justice, equality, and civil rights.

Also, don’t forget that the Early Bird Registration rates for USCA end THIS Friday! Register now and don’t miss out on the lower rate!

Yours in the struggle,
Paul Kawata
30 Years of Service

$30 for 30 Years

2019 is my 30th Anniversary as the executive director of NMAC (formerly known as the National Minority AIDS Council). Nobody lasts 30 years in the same job anymore. I am a relic of the past and a symbol of the commitment of a generation of leaders who came of age during the early days of the epidemic. Please celebrate my 30th Anniversary by making a donation to NMAC for $30, $300, or $3,000. Your support will help build NMAC’s Center to End the Epidemic.

I came to Washington DC in 1985 to fight an epidemic. It was the start of President Regan’s second term. Margret Heckler, Secretary of HHS, said that we would have a vaccine in five years. I left my family and friends and moved across America not fully understanding how my life would change.

While I have a big imagination, no one could have dreamt of HIV. The horrors of the early days still haunt my dreams. I was just a kid, but I had to grow up quickly. Visiting hospitals, planning funerals, and trying to wrap my brain about a virus that was killing my friends and lovers. That would be my life until 1996 when I attended Dr. David Ho’s seminal lecture on Protease Inhibitors at the International AIDS Conference in Vancouver. Combination therapy moved HIV from a death sentence to sometime more manageable; however, let’s not pretend living with HIV is easy.

We are about to attempt the impossible: to end an epidemic without a cure or vaccine. For those of us who were part of the early days, this is a full circle moment. NMAC needs your support to be the leaders our movement needs. To speak truth to power requires nongovernment money. Please help me celebrate my 30th Anniversary with a gift of $30, $300, or $3,000. It is my honor to be NMAC’s executive director.  Thank you for being part of this journey.

Yours in the struggle,
Paul Kawata
30 Years of Service

 

 

 

 

 

 

 

U=U vs. TasP

Undetectable equals Untransmittable/U=U vs. Treatment as Prevention (TasP). One has captured the imagination of people living with HIV (PLWH) around the world while the other seems to have disappeared. U=U was created by community to empower PLWH to have an undetectable viral load so they can’t transmit HIV. TasP was created by scientists to explain how HIV treatment is also HIV prevention.

This difference matters because we are about to build multiple pathways to end the epidemic. Do we listen to community or should the pathways come from scientists? Too often community is dismissed. Getting the federal government and scientists to go along with U=U was a fight. Thank you Bruce Richman for leading the charge.

However, U=U needs private health insurance, the Affordable Care Act, Medicaid, expanded Medicaid, or Ryan White services to be effective. Without continuous and sustained access to healthcare and meds, none of our efforts to end the epidemic will work.  That is why HRSA’s HIV/AIDS Bureau (HAB) will play such a critical role.

Ending the epidemic means retaining PLWH and people on PrEP in healthcare and adherent to meds for the rest of their lives. We know the desired end result; however, agencies don’t know what programs to implement because these communities have eluded previous efforts. So far, PrEP is not reaching communities of color. Four hundred thousand PLWH have fallen out of care or are unaware of their HIV status.

Programs to end the epidemic must not only be scientifically accurate; they also need to retain 1.1 million Americans on PrEP and keep 1.2 million PLWH in healthcare and on meds for decades. Failure to reach scale is the main reason previous efforts failed: we could not reach enough people to get the scale needed to bend the curve of new HIV cases. While 2.3 million people can seem daunting, it’s not like previous effects that needed to work every time anyone has sex. I’m just saying.

To be clear, I’m not saying that community is always right. I just don’t want us to be dismissed out of hand. This year’s United States Conference on AIDS will celebrate U=U and community. Working with the Prevention Access Campaign, USCA is committed to a plenary on Saturday, September 7 that will inspire and educate about the central role community must play.

Now is not the time to reinvent the wheel. Let’s use community to shape best practices for reaching populations hard hit by HIV. Those communities must include gay men, particularly gay men of color, specifically black and Latinx young gay men, the transgender community, black women, Latinas and drug users. These communities are stigmatized, discriminated against, and bullied. Too many are forced to live in the margins of our society because they are different. Their access to healthcare, housing, and employment can be tenuous. While being very careful to not further stigmatize, we need to understand and directly address the realities of their lives. Given all these variables and the complexities of being different in America, how do we also get these folks to stay in healthcare and on meds for the rest of their lives because that is what it will take to end the HIV epidemic in America. Obrigado.

Yours in the struggle,

Paul Kawata
30 Years of Service

 

 

 

 

 

 

 

 

The House Roars

Most of us never read congressional committee reports; however, a subcommittee of the House Appropriations Committee (then click on FY2020 Bill Report) wrote language that could change the course of the HIV epidemic in America. We still have an uphill battle in the Senate. NMAC is very concerned about the Budget Control Act caps. Below is the actual language (in boxes) from the House report, starting on page eight of the 346-page report.

 

HIV INITIATIVE

The Committee invests in a new HIV initiative to reduce transmission of HIV by 90 percent in the next 10 years. The bill includes an increase of nearly $500,000,000 for HIV research, prevention, and treatment—almost twice the size of the increase requested by the Administration.

The bill includes an increase of $170,000,000 for HRSA programs—including Ryan White and Community Health Centers—to increase the use of pre-exposure prophylaxis (PrEP) among people at high risk for HIV transmission and to increase the use of antiretroviral therapy (ART) for individuals living with HIV.

The bill also includes $140,000,000 for CDC activities to diagnose people with HIV as early as possible after infection, link people to effective treatment and prevention strategies, and respond rapidly to clusters and outbreaks of new HIV infections. There is also an increase of $16,919,000 for School Health-HIV and an increase of $17,000,000 for the Minority AIDS Initiative, a cross-cutting initiative to improve prevention, care, and treatment for minority populations disproportionately affected by HIV.

Furthermore, the Committee rejects the Administration’s proposal to cut NIH’s HIV research budget by more than $400,000,000. Instead, the Committee continues to invest in research that led to breakthroughs in current treatments such as PrEP and ART. The bill includes an increase of $149,000,000 for NIH to continue funding research that could lead to an HIV vaccine or a cure.

NMAC and the Partnership to End the Epidemics submitted policy language for the subcommittee to consider. Read the  full report (click on FY 2020 Bill Report), there are many additional recommendations on HIV as well as STIs and Hepatitis. The language is important because federal agencies are required to follow these directives. However, the Senate could add additional directives and the differences will need to be worked out in conference. Here are some of the items that caught NMAC’s attention:

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.

2020 AIDS Conference. —The Committee recognizes the United States is hosting the International AIDS Conference for the first time since 2012. The Committee includes $5,100,000 for the U.S. contribution to the AIDS2020 Conference.

Office of AIDS Research. —The Committee directs NIH to increase funding for HIV/AIDS research by at least the same percentage as the increase in NIH overall funding. The Committee recognizes that OAR’s AIDS allocation to each IC is based on scientific need and opportunity. Therefore, individual IC AIDS budgets may not each grow at the same rate, but total AIDS and non-AIDS funding will continue to grow at a comparable rate.

Sexual Risk Avoidance. —The Committee includes no funding for grants to implement education in sexual risk avoidance, also known as abstinence-only until marriage programs.

The directive about CBOs considered policy language from NMAC and the Partnership to End the Epidemics. Planning councils must reflect the demographics of their local HIV epidemic. The House added the enforcement language. While we still have to wait for the Senate, NMAC hopes the planning directives to the 58 jurisdictions going out in June will reflect the House’s language. The Partnership also pushed for language about CBOs getting funded because in some jurisdictions not enough money flows to community. NMAC agrees with the House that CBOs are best able to reach the communities that are highly impacted by HIV.

NMAC was very pleased by the directive to ensure that NIH increases HIV/AIDS research funding by the same percentage as the increase to NIH’s overall budget. This has been a longstanding agreement. We encourage the Senate to include a similar directive.

Science has proven that abstinence only sexual health education does not work. We commend the House for following the science and defunding sexual risk avoidance. These programs run contrary to our HIV prevention work and our goal to get 1.1 million Americans on PrEP. Comprehensive sexual health education, including education about PrEP, is the only way to end the HIV epidemic.

While we face an uphill battle in the Senate, the House provided a template for the HHS budget that starts our work to end the HIV epidemic in America. Using 2019 funds from the Minority AIDS Initiative, HHS will put out a notice of the availability of funding in June to the 58 jurisdictions to support the start of their planning process. Things are moving and shifting quickly, we look forward to seeing you at this year’s United States Conference on AIDS.  This year’s meeting will focus on the federal plan to end the HIV epidemic. NMAC is pleased to announce that the National Institutes of Allergies and Infectious Diseases will bring representatives from all of the Centers for AIDS Research (CFARs) to USCA. It is very important that we work collaboratively to end the epidemic.

Yours in the struggle,

Paul Kawata
30 Years of Service

 

 

 

 

*This is a photo from back in the day of the Community Planning Leadership Summit. It documents the important collaboration between health departments, community and CDC.  (l-r) Dr. David Holtgrave (CDC), Frank Beadle (AED), Julie Scofield (NASTAD), & me.

As a Gay Man and Person of Color…

I’ve had to learn how to survive society’s contradictions. Even though it shouldn’t matter, the color of my skin impacts people’s perception of my value. People might assume I’m straight until I open my mouth. Being gay means more judgements that have nothing to do with my actual worth. These are the contradictions that face the communities we need to reach to end the epidemic. Daily, they must negotiate a world that minimizes them because they are different. HIV impacts some of the most stigmatized communities in America. Our programs to end the epidemic must reach gay men, particularly young gay men of color, the transgender community, black women and Latinas, and drug users.

Last week the administration released the “conscience rule” for health care providers. This federal rule lets people discriminate based on their personal beliefs. At the same time, $291 million was recommended by a House Appropriations subcommittee to support the administration’s plan to end the HIV epidemic. The irony of this contradiction is not lost on NMAC. On one hand the administration wants to end the epidemic; on the other hand, they want to codify discrimination in HHS-funded programs against the same people they need to reach to end the epidemic.

While NMAC is very thankful for the federal government’s commitment to end the HIV epidemic, that does not mean we give up our values or our voice. Our movement must speak out against injustice. It is the only way to lead. I live with and manage society’s contradictions on a daily basis. I’ve learned how to work with the administration to end the epidemic and call out policies that are unjust.

Our plans must reach people who know they are HIV-positive and still don’t see a doctor. This contradiction is also not lost on me. According to the federal plan there are 400,000 Americans living with HIV who have fallen out of care or are unaware of their HIV status. Given the stigma and discrimination these communities face, it is easy to understand how the conscience rule is not helpful to our work.

To all my friends in the federal government, I know you walk and chew gum at the same time (I stole that line from Terrence Moore @ NASTAD) to fight to end an epidemic while enforcing the conscience rule that hurts the people we need to reach. Can you understand why community might need you to take a back seat? Not ending the epidemic means 40,000 new cases per year as HIV continues to overwhelm communities already marginalized by life. This is why ending the epidemic will be one of the greatest tests of our leadership.

 

Yours in the struggle,
Paul Kawata

 

 

 

 

 

 

Are You Ready?

Yesterday the House Appropriations Subcommittee for Labor, Health and Human Services, Education and Related Agencies recommended $462 million in new funding for domestic HIV programs. $291 million is set aside for the administration’s initiative to end the US HIV epidemic. While we are a long way from final approval, the bipartisan support was a very hopeful sign. This could be the largest annual increase in domestic HIV funding in over two decades.

If approved, the challenge will be to make sure the funding reaches the communities that are hardest hit by HIV. Far too often, funding gets stuck in the system and does not trickle down to the people and organizations in need.

When the Affordable Care Act was about to be approved, NMAC asked the question to our movement, “Are You Ready?” Agencies that heeded the call and became federally qualified health centers (FQHC) were able to grow and expand to be part of the historic gains in health insurance coverage. Budgets and services quickly expanded and many of these new FQHCs are now integral to the healthcare safety net in their community.

Plans to end the epidemic will focus on a biomedical HIV solution. Priority will be given to programs that retain people living with HIV in healthcare and adherent to meds.  There will also be a push to get 1.1 million Americans on PrEP. Is your agency ready to address either or both of these challenges? Remember, it is all about retention and adherence.

The last big increase in domestic HIV funding was for the Minority AIDS Initiative (MAI). NMAC was there fighting for this funding.  In FY 1999, Congress approved $166 million in new domestic HIV funding. We hoped this money would change the trajectory of new cases of HIV within communities of color. Unfortunately this did not happen. Why should we believe this FY 2020 money will be different?

History and experience are not on our side. Our movement needs to hold the government accountable to make sure this new funding does what the MAI could not. Communities of color must be prioritized. For that to happen, not only must we be at the table, we need to lead the discussions and new programming. It is not OK that 70% of the people on PrEP are white while the majority of new cases of HIV and the majority of people living with HIV are people of color.

Yours in the struggle,

Paul Kawata with Miguelina Maldonado who was the lead staff for NMAC’s work on the MAI.

Reflections on the 2019 National HIV Prevention Conference – Part Two

We asked some of our 50+ Scholars to share their experiences from the 2019 National HIV Prevention Conference last month in Atlanta. Our next Scholar is Rodney McCoy, Jr..

I was fortunate to attend the 2019 HIV Prevention Conference, held this past March 18th through the 21st in Atlanta, Georgia. This opportunity was made possible thanks to a sponsorship from the National Minority AIDS Council (NMAC) for their HIV 50+ Scholars program. With this sponsorship, I chose to attend the HIV Prevention Program because I believe in the power of prevention. As the saying goes: “An ounce of prevention is better than a pound of cure.”

This is the reason that PrEP has emerged as a powerful “tool in the toolbox” in the fight against HIV: taking a pill a day to prevent HIV infection can save not only funds in the costs of care, but also can spare individuals the physical, mental and social challenges that come with living with HIV. PrEP was referenced during the Opening Plenary on that Monday; PrEP also took center stage during the Tuesday morning Plenary Session. Yet Gina Brown (of the Southern AIDS Coalition), in telling her story of living with HIV and working in HIV Prevention, provided a sharp and necessary warning in insisting that “we won’t be able to test AIDS away.” Her presentation stood out to me as a reminder that “getting to zero” involves must more than getting those at risk to get tested (which, ironically, PrEP relies heavily on). Ms. Brown encouraged us to address the stigma around HIV, which prevents at-risk individuals to acknowledge their risks for HIV infection.

There were a number of presentations to choose from. As a Health Impact Specialist for DC Health, I chose to attend presentations from my colleagues with DC Health’s HIV/AIDS, Hepatitis, STI and Tuberculosis Administration (HAHSTA). As I work with the Office of Health Equity (OHE), which also co-sponsors a youth program geared toward reducing violence among young people, I was also interested in attending sessions focused on prevention to this population. I attended the “Increasing Access to PrEP through Dedicated Navigation” presentation, as well as the Outcomes of School-Based Interventions to Reduce HIV and STDs session. Most relevant to me was the poster presentation on Sexual and Gender Minority Youth Health, which examined violence victimization and risk factors among sexual minority high school students. (This affirmed OHE’s efforts to include the LGBT community in the discussion of violence among young people.)

A highlight of the conference for me was participating in NMAC’s Video Project. NMAC recorded community leaders at this year’s conference to get responses to questions regarding PrEP; reaching those out of care, and ending the epidemic.

As a person who is over 50 years old, however, I was disappointed to see only one session geared specifically to addressing aging. I was happy, therefore, to raise the issue of aging in the sessions I participated in, as well as my personal conversations with friends and colleagues who also attended the conference.

To My Friends in Health Departments

Thank you for leading the frontline response to ending the epidemic. In the past there were battles between community and health departments. Back then community was concerned that health departments did not understand our reality. We had significant differences in strategy and leadership. Over the last 35 plus years, health departments have hired community leaders, so those battles seems like old news. However, plans to end the epidemic could bring those disputes back into select jurisdictions.

NMAC is developing guides for health departments and community planning council members that outline key issues to ending the epidemic within communities of color. Staff reassigned or hired to put together local plans should reflect the demographics of the local HIV epidemic. Such representation will also help treat the parallel epidemics of hepatitis and STDs.

This graphic was created by the CDC using 2017 data. It does not include the transgender community, American Indians/Alaska Natives, Pacific Islanders, or Asians. Imagine how the table might look if those communities were at the table. It’s not enough to just look at the demographics of planning council members. NMAC believes equal attention should be paid to professional staff, whether they be internal staff or outside consultants. In fact, hiring consultants may be an effective method if local employment procedures hamper hiring internal staff.

Health departments working to end the HIV epidemic should prioritize hiring people living with HIV, people of color on PrEP, gay men (particularly young gay men of color), the transgender community, black women and Latinas, and former drug users. NMAC believes the messenger is as important as the message. Leadership and staff from the communities hardest hit by HIV greatly increases your plan’s credibility. Nothing against white straight cisgender men, but for this effort, you have a different role to play. As I’ve gotten older, I seem to have lost my tact. Selecting leaders from the communities you need to reach sends a message that you are serious about ending the epidemic.

To human resource departments: please hire the most qualified person for the jobs. A core qualification is experience working and living in the communities the plan needs to reach. To end the HIV epidemic, we need to reach very specific communities that have unique and varied cultural values. It is not enough to just be culturally sensitive. If you have no transgender staff working at your health department, then how can the transgender community trust your plan to end the HIV epidemic? Outsiders can be seen as opportunists and not a trusted source of information.

HR needs to understand that they are not hiring a general HIV workforce that anyone can fill. You are looking for people with unique skills. Successful candidates must be able to bring diverse communities to the table to collaborate to build and implement a plan. Too often job descriptions minimize life experience in favor of college degrees. While I have a master’s degree, I will never understand what it means to be a black transgender women living in America and I should never lead or staff a program for them. However, that does not mean I can’t stand in solidarity with transgender community and support their leaders to become the professional staff that our movement needs. If we do this right, ending the epidemic will also be a bridge to professional employment for communities that have experienced generational discrimination.

It’s time to expand what we mean by qualifications and experience. If HR keeps looking in the same places, it is hard to get different people. Yet without community leaders staffing and leading planning councils, this effort could miss key constituents. Too many failures in the past came from smart educated people who had no understanding of the culture and values of the people highly impacted by HIV. Future e-newsletters will discuss some of the wrong paths that our movement has taken and why we need to employ, train, and build leaders from the communities being targeted.

If we are serious about ending the epidemic, then we have to be real about what that means. Sometimes it takes a friend to say something difficult. You know me, I’ve been with you for the last three decades. I’m not doing this to be difficult, I just want to end the epidemic. That means having difficult conversations. HIV’s history is rooted in difficult questions and overcoming impossible odds.

To all the white straight cisgender men whom I love, trust me when I say we all have a role to play and yours is to keep the city, county, state, or federal administration happy. As their peers, you are uniquely qualified. In terms of reaching communities that have eluded decades of previous HIV prevention efforts, you have to listen and work with community. We want you by our side, but sometimes community needs to lead. Solutions to end the epidemic need to work with people outside of your usual cultural references, who may or may not share your values or beliefs. The solutions also need to work for decades or until we find the cure. This judgement is left to be said by the oldest queen in the room. The truth will set you free and create the space needed to end the HIV epidemic!

Yours in the struggle,
Paul Kawata

The Power of Language

NMAC will be closed today as we celebration Emancipation Day. On April 16, 1862, President Abraham Lincoln signed the Compensated Emancipation Act and freed more than 3000 slaves in the District of Columbia. However, slavery did not end in the rest of the United States until after the American Civil War, which lasted until 1865. In honor of this important day, here is an email from jessi Mona Cartwright-Biggs where she calls out NMAC. With her permission, I am sharing this email because it is a treatise on the power of language.

Howdy from Positive Women’s Network-USA Greater Houston Area, Texas Chapter. 

I am a proud NMAC Member. I joined when I first heard of you. You were kind enough to feature me in your Newsletter AND in my ignorance, I did not realize I was going public. Yikes! It’s all good now, no worries.

The benefits of being public with my status, as a Black American Senior Woman living with HIV has been so rewarding. I want to mention that the shame, guilt, and loneliness are no longer a part of my life today. The reasons for this positive [no pun intended] transformation are many. However, I ask you to understand one essential extremely important factor that continues to help me live the life I live today free of Stigmatizing Language. 

I am not sure you can identify with the words…  However, I can. I am not yellow. I am not brown. I am not green. I am not pus. Pus is an infection and the colors noted are colors of an infection. I am not infected. I am a clean Black woman living with the human immunodeficiency virus called HIV.

I was uneasy, disheartened and not happy to see and read such an abundance of stigmatizing language on your website… hurt.

I am asking for your purposeful & authentic support in promoting an END to the HIV epidemic. I am asking for an immediate project to review and amend the stigmatizing language being used on the NMAC website. Thriving with HIV is a place in a space that need not see, hear nor read stigmatizing language anywhere. I totally get that this will take time. As time changes please adapt and change the harmful language on the NMAC website, please. Thank you.  

Peace,
jessi Mona
PWN-USA GHA-TX Chapter
Co-Chair/Out Reach

Reading this email, I felt shame, anger and pride. Shame and anger because NMAC made a mistake, but so much pride in jessi Mona. She spoke truth to power and made her case as only a women living with HIV can. Calling someone out, even your friends, is central for how communities without privilege speak. If you don’t understand this reality, the experience can be alarming. If it’s not happening at your planning council meetings, then you are speaking to the wrong people. Now is not the time to only work with people who agree with your point of view. Leadership understands the importance of honoring the culture and values of the communities we need to reach to end the epidemic.

NMAC hopes community planning councils (or whatever they are going to be called) include orientation by local leaders from the communities needed to be reached and to understand that being called out should be embraced and not feared. For far too long, NMAC tried to make everything perfect. Our movement is too diverse and the culture of being called out is too engrained. Rather than making everything perfect, we’ve had to learn how to embrace the messy nature of our work and the reality that we can’t please everyone.

Our efforts to end the domestic HIV epidemic must reach communities that have eluded previous efforts. We cannot do things the same way and expect a different result. jessi Mona shared another important lesson when she wrote, “The benefits of being public with my status, as a Black American Senior Woman living with HIV has been so rewarding. I want to mention that the shame, guilt, and loneliness are no longer a part of my life today.” Too many suffer from stigma society places on people living with HIV. This stigma can lead to isolation and depression. NMAC believes depression is a major contributor to lack of adherence and falling out of healthcare. jessi Mona became part of a cause bigger than herself when she joined PWN-USA GHA-TX Chapter. Through this community of women living with HIV, she found the support that helped her to rediscover her power and voice. When you believe your life matters, then it’s much easier to do what is necessary to survive.

We are betting on a biomedical solution that will hopefully give us a “herd” theory of immunity, but that only happens when people are retained in healthcare and adherent to meds for decades. After I got her email, I immediately wrote back and said, “I am so sorry, yes, I will ask staff to review and correct.” jessi Mona’s final communication to me:

Oh, Mr. Kawata,
You are the best! Your prompt response and recognition of this important matter have touched me. I appreciate you. Thank you so much.
Peace,
jessi Mona

I shared this story because it put me in a good light, but it didn’t start there. You should also know that I forwarded these emails to staff and let them know our web page needs to be fixed immediately! Please check your web sites, e-newsletters, and social media feeds to be sure your language does not stigmatize the communities you need to reach. This is particularly important for federal HIV communications. As leaders of this effort, you set the tone for all of our work.

Yours in the struggle,
Paul Kawata